Trigger warning: Talks of mental health, vulnerability
You: How are you?
You: Ok. What's up for today?
- - - - - - - - - - - - - - - - - - -
I'm sure you would agree that this is, the normal greeting and conversation you would have with most people throughout your day. What purpose does it serve when it is offered by rote, and from both parties?
There are times when the question might be just a little different and if you stop to think about your response you can create change. Observe.
Y: How are you?
Y: Hmm... Do you want to talk?
- - - - - - - - - - - - - - - - - - - This is when a life can change, your life, and it's totally in your control.
Hi everyone this is Russell, the Ostomistic Husband.
Recently, I had a bit of a breakdown at work. I got there to work okay, but then things just got just a bit too much for me. Luckily, we were made aware that there is easy access to a counselling service available to staff, through our EAP, so I had to sort of bite down on my pride and ask for help.... finally!
This was hard, but the hardest part of the day came next.
Next, was the call to the counselling service which led to even more of a breakdown, so obviously there was more to it than just a momentary lapse in willpower. Just talking to them about why I was feeling so teary led to finding I was truly angry on the inside, and I realised it was about time that I started opening up for real and sharing these feelings with someone before they became more harmful…. If not only to myself but to others too, and its the least I want.
The tears were because I was really worried about Talya’s declining health; your best friend dying before your eyes, is enough to jerk a tear from even the most hardened macho jerk. I'd gotten to a point where I had to really start opening myself up to someone and letting them in.
That hurt me because Talya is the most supportive and talkative person I know, yet, I was not letting her in. I know she only wants to get inside my mind further and help me work through this, but I think that I can’t talk to her about how I feel because that would not be me being strong for her. I also know that Talya doesn’t tell me how much pain she’s in all the time because that’s her being strong for me.
I am so tired of us pushing against each other when we really should be pulling each other closer, so we can rely on each other‘s strength to be able to help us in our time of perceived weakness. The time is now.
The anger itself, was mostly a due to the fact that I can't control everything. I was finding that the more stressed I was getting the more time I'd have to take off work. Missing out on income didn’t help things, we would have to tighten the purse-strings at home for the following weeks as only small paychecks came in. That made things even more stressful so on spiralled everything down towards chaos and I thought, "Enough is enough! I have to man up. I have to deal with what’s going on inside, uncomfortable as it is I must move forward".
I have autism, so it’s hard for me to talk about feelings that I don't fully understand. But, I have to find a way of communicating my internal workings to someone so that they might be able to give me some additional tools to better deal with those feelings. I don’t generally feel emotions all the time, and when I do get them they are usually overwhelming and too powerful and it scares me.
Unlike most people, I didn't get to learn how to deal with those feelings, in their varying degrees, when I was younger. So when I get some hot emotion it’s just like a huge slap in the face and I don’t know what to do. Actually I do know what to do; I do what most people in my position do, and that is retreat.
So usually I retreat inside myself rather than looking for outside help. I think it best to stop talking, I just want to be alone, I just want to suppress those feelings and hope that in time they go away. I need to learn to recognise there are times that I can self heal and there are times that I require external forces to help me to heal.
What I'd been doing up to now was no longer working, so I had to make a change, it was only inevitable. I think that having this counselling service available to me is a lifeline that has been there for me for years, had I just opened my eyes and pride to the service. I know it is going to be a huge benefit to me. I may have the secrets of the universe poured into my open and receptive mind or I may only learn relaxation techniques to help deal with my grief, not just loss but the anticipatory grief too.
Either way I will be in a better place than before simply because I answered a question posed to me in simple conversation honestly, not automatically.
So basically my message here is if you need help ask for it. If you can’t ask the people that are closest to you then for the sake of your sanity and health ask somebody else.
Just do yourself a favour and talk to someone, even if you do all the talking and you realise what you need to do without them saying a word. The fact that they’re there means you are not alone and that you’ve opened up to them means you are able to start healing.
I just want all the blokes out there who are carers to someone who is chronically or terminally unwell, that I see you, that I am you and that you are not alone in this brother. We are the forgotten brotherhood in this story but if anything we should rely on each other.
Let’s remove the stigma that it isn’t the blokey thing to speak up about our feelings, but we shouldn’t feel ashamed for when we do cry, it is better than bottling it all in and an avalanche of problems emerging.
Fellas, we need to be the best parts of ourselves so we can be the champions our women need us to be so lets make a pact that we will not go through this alone anymore. Yes, it isn’t us who are sick but we are the ones who are here holding their hand when they are crying, comforting them in their times of need, but we keep neglecting that this is all taking a toll on us too.
The pain at the thought of losing my beautiful wife is all to hard and real but I know I am not the only partner or husband out there who is feeling this anger and loss.
How about I start up a group called "The Ostomistic Husband brotherhood", where it is a fb group you’re welcome to join and share in the times you are struggling and need a little clarity or just need someone who gets it to know you aren’t alone, I won't be available to offer advice or act as a counsellor but should you need somehwere to ask for questions or need a safe space to open up, this will be it.
If you would find this group valuable comment yes under this blog. It is a safe space, men or partners or carers of someone ill or terminal.
I know there isn’t much support for the men and the carers but lets be in that change tonight.
It is only one day at a time that is given, but lets use that day to try and be the change we wish to see in the world.
Please don’t forget you’re not alone, I am you, I see you, I feel you.
About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au.
I had wanted to write about this topic so many times last year, but each time I feared if I did it could somehow come across that I am some angry hermit who doesn't like visitors.
I don't claim to talk on behalf of all the people who are chronically or terminally sick, I simply am sharing mine (and my husband's) views of how we feel when you have surprise visits. Sometimes surprise or short noticed visits are difficult and stressful, you mightn't realise but there are reasons that make surprise visits difficult.
It could be very easy for you and your loved one who is sick to know how you can better support them and what things or actions don't help them. Finding how they feel about their needs or issues and how you can better help could be a starting point so you both can understand.
It is hard when you're chronically (and also in my case) terminally sick and trying to navigate the waters of keeping up appearances, being social and people visiting often surprised and unnanounced. I know people care and they decide as a last minute thing that they wanted to visit me for the day but don't bother telling me as "it is fun to surprise you" thinking it will make me feel great about myself having visitors, but they don't realise surprise visits cause me a lot of stress and anxiety which I explain below.
Don't get me wrong, I like when people visit but only if 2 conditions are met: #1.I have notice and #2.Providing I am feeling up for it.
There were a few times over the past couple of years when people had surprised visited me and despite continually asking for no surprise visits, they still happened.
Family and friends were outside waiting and were upset and bothered when I didn't answer the door, because I was asleep and had my phone turned off so I could sleep.
I NEED notice when it comes to having visitors for a few reasons.
#1.I sleep a lot:
I'm not lazy, I am sometimes tired of having to explain and justify my pain or tiredness, but there are days if not weeks or months where I am asleep and resting. I turn my phone off on my bad days or when I have had very little sleep and need un disturbed sleep. So telling me the day before gives me notice for then being able to make sure I am up and ready if I am ready.
#2.My stoma leaks a lot:
My stoma leaks a lot, 95% of the time when I wake I am dealing with leaks. It is really stressful when woken and knowing people are outside knocking and waiting/expecting me. It is something that makes me anxious when I do realise people are waiting for me, as if I am home alone I have to try and deal with a leaking stoma whilist trying to get to the front door quickly (often I miss the postie or courier and have to drive to Coffs to get my parcel). It is also why I get upset when Palliative care would randomly rock up without telling me and then were cranky when I wasn't home to answer the door when I was, I was just in bed asleep... so when my stoma leaks it can take me time to get ready. It means needing to get dressed and cleaned up and clean my linens if needed. It is something that I can need time to be ready, and knowing someone is outside waiting for ages makes me feel more flustered.
#3.I often sleep starkers:
Because my stoma leaks a lot, it is just easier to sleep with either no clothes on or just undies and no PJ pants. Sometimes I wear a top sometimes just undies and no top... so it is less laundry to wash because guaranteed my stoma leaks often in the middle of the night or when I wake and it is hard to have to strip down while trying to do a bag change - all while magically avoiding making a mess! If it is just going to be me home it is best if I know if anyone is coming so that I can have notice and get a chance to get ready. When you surprise rock up it can be hard as my clean clothes could be in the laundry (in the dryer) and I have to try and get through the house with just a dressing gown on and hope if you're outside waiting that you don't catch my streak through the house to get my clothes.... so I need notice if you plan on coming for obvious reasons.
#4.I am often in pain and bedridden:
When Russ leaves for work of a morning he shuts and locks the door as he walks out. So sometimes if I know someone is coming to visit I would ask him to leave the door unlocked and shut. If this is a day when I am barely able to get out of bed it can be stressful knowing someone will arrive and I can't exactly get up to open the door. I was criticised last year (well, 2016 too) when I wasn't much of a host and "don't make people feel comfortable or welcome" because I can't be a host. I think it is hard for people to understand that it is painful and difficult to stand and walk let alone be a hostess. If you come and visit, please have zero expectations of what I am meant to do... don't expect me to go above and beyond to impress you. I am not being rude, you might think I am, but if you wanted a cuppa help yourself.
On days when I am bedridden I would love visits, providing you are understanding that I am in bed and you can sit in my room chatting with me. But don't expect me to get up and entertain you, defeats the point of being in bed resting. Don't ask "when are you getting up" or "why aren't you getting up" because it makes me want to kick you up the butt if I could because I don't need to justify myself to anyone.
#5.I can't just simply duck out to the shops:
If you just surprise visit me and I don't know you're coming, you very well could be having a cuppa without milk. Some days Russ will make his coffee for the day in his thermos and takes it to work, it is a guzzler for milk. So its very likely that he uses the last of his milk as he leaves for work knowing full well that he has to buy milk when he finishes work in the evening.
If you arrive and we don't know in advance, even if you tell me in the morning, if Russ has already left for work it is too late. I don't have a car and can't drive much anymore, so if you surprised me it would mean I wouldn't have milk or cake or anything and would be a terrible host (again) and I would be feeling so anxious all day if you arrived worried that am I going to hear about this from others about how I am a horrible host... I don't mind if you do turn up unnanouced, just don't be upset if I don't have milk or coffee and can't get to the shops.
#6.I need a chance to cancel:
I always will try and attend something regardless, but there are times when I am in too much pain or phsyically unable to attend. Giving me warning and time in advance of a visit gives me the chance to cancel within reason. If I had notice I could tell you ahead of time to not waste your petrol in coming up if I wasn't up for the visit, I would hate you to be disappointed with your visit or feel like I wasted your time. If you surprise visit me I can't give you the chance to avoid being disappointed with me.
#7.Our house mightn't be visitor friendly:
The entire household chores and running falls mostly on Russ' shoulders. He also works full time. He has a roster system of how he does the house, one day he does the rubbish and kitty litter (and every second day) and some days he would do the bathrooms or vacuum. If you surprise visit us, we will feel embarassed because the kitty litter might be due to be done that day or the rubbish. It can be hard when you surprise visit that I am anxious if you are judging us the entire visit and will go off and tell others about how we live, which has happened, and makes us less inclined to invite you back.
I could go on about scenarios, there is so many more.
But I do love a visit, just prefer at least a couple of days notice at the very least to make sure the house is ready or that if you're staying the guest rooms are ready. You can visit, please just understand that turning up and surprising me isn't what works best for us.
I know it is hard to understand, but please do reconsider and try to give us as much notice for when you want to visit. I want to have a nice visit with you but I don't want either of us to feel uncomfortable.
If you do decide to that day or morning to visit, please give me as much notice as you can. If you arrived in Coffs at 9am but aren't visiting until 4pm Don't wait until 3pm to call me! Tell me first thing so I can have time to assess if I am up for a visit or under what terms. If you don't hear back from me or Russ before 4 hours before you're planning on visiting then it might not be the best day. If you don't hear from me, try Russ.
But if Russ says "today isn't the best day she isn't well" please respect his call.
Don't continue to turn up and then be upset if you're outside waiting for me for a while and I am asleep and don't know you're there until an hour after you've sat out there waiting. If you haven't heard a conifrmation at least 4 hours before arriving on if I am aware you're coming or if it is the right time, than maybe it isn't the most apporpriate time for a visit.
Again, none of this is said to upset anyone, I want visitors I really do - I just don't do well with surprise visits. My health IS declining and I am spending more time in bed, so surprise visits really aren't ideal for us anymore. #sorrynotsorry
As I said, ask your loved one how you can support them and what they need from you, in my case try to avoid surprise or unnanounced visits.
I know I have chirped on and on (and on) about how we are struggling financially and that I am concerned about when I die and if Russ can manage it on his own. I know you're probably sick of hearing me go on about it, but it honestly is so stressful.
It is hard being on one income, I know it is overwhelming for Russ too.
So last week we got a letter from our bank informing me that as of today (the 12th) our mortgage will be going up $500 a month.
This really scares me.
Not only do I not know where I am going to pluck that extra $500 from this month considering we are already halfway through the month, but that I really am so stressed and upset.
Yes, I acknowledge my priviledge in that we have our own mortgage, but even when we were renting things were hard and the rent assistance really made the world of difference when it came to our budget. But it doesn't mean that things instantly became easier when we got out mortgage. I didn't realise how much harder it was to have your own place.
I see how worried Russ is over this and I know he is on the fritz of losing it as it was before this letter, now he is just even more stressed. I feel so guilty, I know it isn't my fault and that I couldn't help getting sick but it is my age old issue with that I should have gotten life insurance earlier or made more of an effort to do extra super contributions when I worked as it would mean I have more than $3000 in super.... which I am still fighting to get out mind you.
That is a fight for another day.
Yesterday I got a copy of Barefoot investor in the mail (thanks to a beautiful friend buying and sending me this copy) and started reading it, I have heard everyone rave about it and how effective it truly is, so it gives me hope for the first time that maybe I can get things under control this year.
So many have raved about the books!
It is one of my goals to get things neater for Russ, I don't know how much time I have and I think it will just be a massive peace of mind to know it is under control.
We have our mortgage, debts, car loan plus our other bills. So I try each year to review things to see if there is savings to be found, so I am hopeful that this book will help me even more.
Plus, it is one of my goals to read more too, so this is already tackling my goals for the year.... maybe this year is getting off to a stressful start but it might be turning around? Always hopeful that things will get better, surely they have to?
A friend has put me in touch with a broker and hoping we can find a new bank with a better rate and can consolidate our debt which will mean freeing up a lot of weekly expenditure and might mean we can afford to start saving.
So tell me, have you read the book? Did it help you? What was the biggest take away you had from it?
I will let you know when I have finished reading it and what progress I make.... until then, wish me luck!
We also got Solar Panels on recently, they had a 5 year interest free offer, so we are really hoping that on our next bill we can see a difference, otherwise I am going to be rather upset. Russ assures me we will be better off and that it will improve the value of our home too. Do you have solar panels and do you see a difference? Next bill is March, so will let you know if there were savings to be had.
As always, thank you for listening and wish me luck as I tackle this mammoth task!
You don't need me to remind you that Christmas is around the corner and fast approaching, I am sure everytime you step into the supermarket you're reminded with visual cues.
But just in case you live under a rock.... there are exactly 2 Sundays left until Christmas.
so #keepcalm, don't panic - you've got this!
I have always had this dream of hosting Christmas one year, not realising the full extent of what that might involve, I naively and dutifully spent time preparing and getting the house and ourselves ready last year - as it was indeed my turn.
As my family live 2 hours away, this meant they needed to travel up the night before (for those who stayed the night) or the next day (for those who didn't stay). I am the oldest of 10 kids, then there are our partners and now nephews, so there were a lot of people coming for the couple of days.
So here were the things I did to help myself prepare and get ready for having guests over the holidays or throughout the year, based off of various guest's experiences or feedback over the past year....
My 10 top tips to getting ready for guests at Xmas time:
#1. Ensure there is plenty of toilet paper:
It is just usually my husband and myself, so we buy our toilet paper from Who Gives A Crap which is good stuff for your bottom and the environment, plus every roll of paper goes towards giving someone access to a toilet for a week. Living with bowel relatable illnesses for years, I know how important proper sanitary access is.
So a normal shipment lasts us 3-6months, but as we were having around 15 extra people in the house we decided to order our shipment early and have toilet paper supply at the ready.... last thing we wanted was on Xmas day to run out and the shops are closed. I felt a little less stressed knowing that we had ample supply.
#2. Knowing the meals or menu ahead of time:
A month before Xmas I had finalised the meal plan and menu for Xmas day, I had spent the month beforehand getting input from family attending on the day and curated a menu that I then knew was to everyone's liking. I asked people to bring their own alcohol or seafood, as everyone has their own preferences and that shit is expensive, so this helped me to stick to my budget too.
By having the meal organised ahead of time it meant I could shop where items were on sale and could get things such as soft drinks when on sale and kept aside. I just had to get the fresh stuff like bread rolls, meats and salads Xmas eve.
By also knowing what I needed to grab Xmas eve it made a quick dash to the shops a breeze, we even had to get the wheelchair out, but we had a list, we checked it twice, and we were in and out of there in a jiffy.
Yes, I designed and sent out a flyer for Xmas day - I informed the menu plans, what they needed to bring, accommodation options and also offered to wrap presents... I think the last part people may have thought I was joking about. But Talya doesn't joke when it comes to wrapping presents - I love it!!
#3. Prepare things before Xmas day:
I am unable to stand for long periods of time, so cooking is something I delegate to Russ nowadays as it gets too painful and tiresome. If I can prepare things seated, I will. But knowing my lack of energy and ability to cook I knew I couldn't be the host slaving away in the kitchen all day and as a result missing precious family time.
So I had most things done the night before in the fridge, then I spent some time in the morning quickly doing the salads and cooking some foods. I was lucky and grateful that my family did most of the cooking for me, it made the day less stressful.
#4. Ensure your guests have easy access to items:
I know when I have been a guest at someone's home, I always felt awkward when asking where things were such as toilet paper, towels, soap etc. So keeping this in mind, I tried to make my guest's stay easier.
I know if I am resting people don't like to bother me, but I know this is out of a place of courtesy and caring but also they don't wish to be a bother. So I tried to organise my guest bedroom and bathroom with this in mind too, trying to keep people feeling welcome and at ease is important to me... as I do hope people come and stay again.
So in the room I have a basket of various toiletries and items I have collected throughout the years. Whether it is hotel soap or shower caps, or a pack of disposable razors, or pads/tampons, or even sunscreen and aeroguard. Most items were on sale or as part of a 3 pack and were naturally spares. I also have toothbrushes too, in case a guest forgets theirs. I also have spare heatpacks too.
I hope that by having all the items one may need readily and available to them, that it might help offer dignity to their stay.
The basket looks more full now, but this was the first items put in there. I just add things when on sale etc.
#5. Have plenty of towels available:
When you have over 10 people staying in your house, you need a lot of towels!
I spent the weeks leading up to Christmas re-washing our spare towels (they had been in storage since the move) and made sure that these were fresh and in ample supply. I gave at least 2 on the bed for each guest (in case one was needed for hair), along with a face washer, soap bar, and had all of this ready for when they arrived.
In the linen cupboard were 50 more towels ready, we just wanted them to be prepared.
#6. Have empty and clean bins near all toilets:
I found this tip on a blog by Rebecca Senyard who blogs at "The Plumbette" which said to save your plumbing this Xmas, to have an empty bin near your toilets for guests to dispose of sanitary items. I was shocked to think people flush them, and as a home owner, I would hate to foot the bill to repair the plumbing (especially over Xmas) because something blocked it. Gross!! So to avoid this fiasco this Xmas pop a bin nearby, if you already have a bin there just be sure to make sure it is empty before guests arrive! This again helps your guests to have dignity when they visit too!
#7. Have a toilet plunger, toilet brush and spray ready too
As important as step #6 is, this one also applies. Guests may require the use of a plunger, toilet brush or spray, so make sure you have your bathroom stocked and ready for guests this Xmas. Saves them the embarassment of needing to ask.
#8. It's okay to need 'me time' and step away for a breather
I am a person with high functioning anxiety, I tend to get overwhelmed very easily and even around my family or in social settings sometimes I don't say much or I just say drivvle because my brain just freezes and I just don't know how to act or what to say. I tend to be over analysing every word said, every social cue, what someone is thinking of me, and this is rather tiresome.
It can be hard when you're hosting Xmas or any event as it is your house and everyone is there or everywhere, you tend to feel a bit overwhelmed. It is important to have somewhere in your house that is YOUR (underline YOUR) space and somewhere that is off limits to everyone. You might not necesarrily make this a known no-go-zone or add signage to the door, but as long as you know you have somewhere you can escape to it will help you.
I love my family, I love spending time with them, but there can be times where I need to just disappear for 5 or more minutes for my ability to keep calm and carry on, so when it is at your house it can be harder. So have a space where you can just be alone to regather your thoughts or to practice mindfulness techniques or to just take a breather... it is important to know your own limits too. This can be a form of self care too.
#9. Have a fan or cooling option available, especially if it is summer
Here it can be pretty hot and muggy (humid) around Christmas or Summer, so while we have ducted air conditioning, we also have a pedastal fan in the guest rooms to have options to what makes them more comfortable. It is hard sometimes in Summer to get a good night's sleep, so if you have a big day planned your guests might need plenty of rest.
A fan is good too, as sometimes people have trouble sleeping away from their own beds and a fan offers white noise which may help them to feel calm or relaxed, even if the fan is kept in the cupboard in their room for example, it gives them the option of not having to ask or be embarrassed because they need a fan.
#10. Have fresh linens on the bed ready when guests arrive
When you know you have guests arriving, especially if they are having to travel, having their beds already made with freshly washed linens will help them to retire early if they are tired without the delay of waitiing for sheets to dry or the bed to be made; and by having the bed ready to go when they arrive, your guests can rest whenever they need to without the embarassment of needing to ask. I know when I travel I am in pain and I often just want to have a nap, so it helps to have this all ready for them when they arrive.
Dusty loves when people visit - as do I!
bonus tip #11. Have plenty for your guests to do
I know not everyone likes to be social 110% of the time, so we have tried to have things that people can do if they wanted to. Whether it be a TV in their room to watch their own TV shows (my MIL always watches Star Trek or Castle box sets when she visits) and having a spare TV means we aren't bothering each other with our own shows. We also have a board games cupboard with a massive range of games, not to forget our book shelf with heaps of books, or our large DVD collection. We also got some toys for when young children visit and to keep them occupied.... we have bikes and spare helmets, a dart board too, we have so many different things that we hoped guests won't find our place boring... we aim for fun yet inviting, so it is a work in progress!
So while I know there are plenty of ways to help prepare yourself and your house for guests, whether it is the holidays or anytime during the year, these are just some of the ways I have tried to ensure my guests had a good time when they visited.
Wishing you a lovely holidays, hope that you have a wonderful time with your family or friends and thank you for your support during this year and beyond, it really means so much to me! Every comment, message or email doesn't go un-noticed and are very appreciated.
Merry Xmas and a Happy New Year from my family to yours (2016 photos)
p.s what other tips do you have for getting your house ready for guests or to ensure guests have a good stay? Let me know in the comments
When I talk to a lot of my friends or peers who aren't sick I realise just how different our current life stages are.
I have some friends that are busy planning their weddings (which I am loving being involved as I just love LOVE and weddings and all things happy) but I am at the stage of my life where I am planning my funeral and my list of wishes I want to do before I kick the proverbial bucket... but just because I am planning my funeral doesn't mean I have given up or that I am not being optimistic or ostomistic I should say about my situation.
While I feel a little sad that this is my current reality, I am in no way giving up so please don't tell me that I am.
For me, planning my funeral and writing a bucket list or as I prefer to call it my 'happy list' I feel is somewhat empowering and it makes me feel I have control over my situation, and control is something that is often lacking when you are sick, especially terminal.
Why is it empowering you might ask? Well it is simple really... it means I have control like I said just before, but it also means that when the time comes my family and husband won't be left wondering what I wanted to have done.. and I have seen the arguments over funerals and who organised what or didn't organise and I want to spare my family that extra stress when they are grieving... albeit they will have to make arrangements and finalise the order of things like flowers and food as I don't know when I am going to die (and this is the hard part about planning your funeral). But I am planning on having everything written down and instructed and planned so all they need to do is make a couple of phone calls and order things... I want it to be simple for them and want them to feel stronger that they don't have to make these decisions.
One thing I am struggling with is having my family and friends involved in helping me plan my funeral.. which it will be more a party/memorial service as I plan on being cremated so there won't be a body. But, no one is wanting to help me and I understand it is hard for them but I just wished I could talk openly and be supported without feeling like I am upsetting them. And I don't want them to read this and feel obligated in anyway to talk with me or help me plan, it is just one of the hard things about my situation is that it is hard on those who love me.
I want a party like service where everyone is to wear colours, and I want to find bio-degradable balloons that I can have released, I want bright flowers, I just want it to be bright and bubbly like me and not dim and black and depressing because that isn't me.
I am working on a concept for my funeral called a 'waste free funeral' where things like flowers can be donated to nursing homes or people in hospital doing it tough to make their day brighter, or left over food to be given to homeless shelters or like the balloons I don't want them to impact on the environment. I want to have a great send off but I don't want to hurt the environment or others, so I want to give back where I can and this is my way of doing so.
But please, if I am wanting to talk to you about my funeral and I am all happy and chirpy please just think about what you're about to say as it hurts me when you say things like "well that is too depressing to talk about", or "why are you giving up" because I don't want to do this alone and I am not sad or hurting about this decision... as I keep saying it is making me feel empowered.
I first became a member of the ostomate world back in May 2013, when I had all of my large bowel and most of my rectum removed in a procedure to save my life from the perils of bowel cancer.
It wasn't until July 2015, that I experienced my first really bad bag leak during the middle of the night resulting in soiling not only the doona and sheets, but the mattress protector too.
Worst of all, I wasn't even at home. I was staying in a hotel for a few days in Melbourne.
I had to call the front desk at 3am in tears asking for fresh linens, when they replied they don't have any until room service come in later that morning and that it will be best to change rooms. I was absolutley humilated and mortfied but the guy reassured me that it was okay and it wasn't the worst he has seen. (Got me thinking about how dirty some people can be!)
So when I continued that short holiday (was actually down there for a big bloggers meeting, which was exciting) and then when I got home I made the decision to sleep with towels on my bed and wrapped around my belly, that if my bag did leak it would be somewhat protected and not cause a mess.
Afterall, my mattress and bed cost me $6k and it is white leather, so I am rather protective of my bed... initially I was too scared to sleep in it with the leaky stoma... and it isn't just at home I am scared of a leak, I am hesitant to stay at other people's houses for that reason.
I know that you're thinking "just get a mattress protector", well I have one but I worry it won't give me a lot of protection if it is a heavy leak (which most are).
And it got me thinking about what disposable and cheap products could I use to help give me peace of mind when sleeping.. and I came up with one great one (and will also share what one reader's suggestions were too).
So if you have a unpredictable and leaking stoma like me, here are some affordable ways to protect your sheets.
Cheap, thick and disposable table cloths
I was lucky that I had a garage filled with all these party supplies I wasn't using after purchasing and attempting to sell through a failed business venture.. so I have been putting the table cloths to great use and they are rather thick and durable and best of all cheap and disposable. I know the reject shop or other cheap shops sell them too
Some suggestions from a reader were:
Plastic shower curtains
Garbage bags torn open
Update:What I use now and how I protect my linens
Since writing this post a year ago almost (it is now May 2017), I have been trying out new methods and ideas to help protect my linens and mattress from my leaking stoma in a way that was easy to manage and was being savvy too.
So I found a product called a "Kylie" which is a quilted mattress topper that has a rubber/waterproof underlay so nothing will seep through to the mattress and sheets underneath. I found these at a local homecare aid store for around $40 for a double, I purchased a couple through the help of a local service and have one on my bed and one spare.
So now when I do have a leak, I simply take the soiled Kylie off the bed and into the wash and put the new one on the bed. I find it is easier for me to manage when I am at home on my own while hubby is at work.
Here is a look at how I place it on my bed. I make my bed/sheets as normal, I put the kylie down then a disposable bluey as an added measure. I know the Kylie is meant to go under the sheets and tucked under the mattress, but given how heavy my mattress is it is not something I can manage/change on my own.... so this is what works for me and for a year now I haven't looked back. I also take a kylie with me when I go and stay at family or friends places too.
One thing that I am learning more and more each day as I progress through my chemo regime is just how much fatigue I have and how little energy. I am realising the need and importance for energy conservation and working on improving this for myself and hoping to share a blog post to help others too, afterall being chronically sick is exhausting.
Another thing that is exhausting is dealing with the emotional side of living daily with a chronic and terminal illness.
I realised yesterday, that in order to help conserve my energy and to prevent just how exhausted I am feeling today, that I should try and keep my mental breakdowns and panic attacks to a mininum or at least save it for the times that need it most, or best yet to wait until you have all the facts and a confirmation from your primary care physicians before freaking out.
This is what happened yesterday and the lead up to it.
I went for a CT scan of my abdomen for a suspected fluid leaking into my abdominal wall and possibly the reason I had fevers and have been in hospital since Wednesday night. The scan was to also compare my tumour growth and check on the tumours to ensure that those hadn't yet turned septic and were the cause for worry.
The doctors confirmed that either there is a new tumour to the right of my stoma or that it is a cavity that is filling with fluid from my bowel or stomach and needs to be drained. Surgery was discussed but they decided to do an ultrasound on Monday to get a better view of what is going on.
Monday 09.11.15 1PM AEST:
I went for an ultrasound and the radiologist came in and said "that isn't a fluid cavity that is a tumour and without knowing this patients prior history I suspect it is a desmoid tumour". He turns to me and says "I am sorry you have a large tumour 10cm x 11cm".
I left there trying to hold it together as I was hoping it was a fluid cavity as that could be fixed with a surgery and drain, but a new tumour I couldn't handle.
So I broke down I couldn't stop crying and I was freaking out that there is a tumour somehow in between two other tumours and my stoma and where on earth is it fitting and is my stoma going to be okay, will I be okay, does this mean my death is looming nearer than I expected? These were all questions running through my mind then the biggest freak out of all was "I can't die just yet, I am too young".
I was howling (literally) uncontrollably and couldn't stop crying. I needed support I needed someone to tell me I was going to be okay... I called my husband at work and my mum who came and sat with me and brought me a drink and some lollies.
Monday 09.11.15 3PM:
My doctors came in, first my bowel surgeon who was talking to me about my tumours and explaining how sometimes they can die from the inside out when chemo is involved and that the centre is liquid and can become septic.
Then my oncologist and his team came by and he asked what had me so upset. When I told him he replied "I am so sorry for all this upset caused but someone told you the wrong information, you don't have a 'new' tumour you know it is there it is the big ball under your skin at the top of the stoma". I was all confused and said "Wait whaaaaaat?"
He replied "it is new on the scans you've had here at the hospital, but not new on the scans that you had back in August which is why I asked your husband to bring them in, I am so sorry someone told you you had a new 4th tumour but you still only have the three."
My tumour the "new" one. To the left of the image is my belly button, my stomach normally would end there but that is how big the tumour is.. see it resembles a ball!
I felt like the biggest dickhead ever and felt horrible for causing my family further heartache, but my heart was broken as I was told the wrong misinformed information and I hadn't yet seen my primary doctors to have it all confirmed.
They saw how fragile I am and have transferred me over to the private hospital for a few days respite to help me recover, regain my strength and collect my thoughts again.
Lesson learnt... don't freak out until you know all the facts
To my followers that were supporting me yesterday during my freakout, I am so appreciative of your help and sorry for an undue stresses caused for worrying about me... It was not a cry for attention I legit thought I was on the brink of dying (so scary).
Much love to you all x
Tell me in the comments below, a time where you freaked out before knowing all the facts
For most of the families or couples I know, live on a budget and it is often paycheck to paycheck. I know this is the case for my husband and I aswell.
It wasn't until my husband lost his job in 2012 (when his employer went into administration) and at the same time my hours had been reduced from 24 contracted hours weekly to 4 (unless I picked up extra shifts), so I had to learn quick smart a) how to budget, b) how to make the money we have from each pay count and c) how can we manage when there is more money going out than coming in.
Up until this point, I had never created a budget. But once I had, I saw how much EASIER it made managing the bills, and three years on I am still finding the success it has helped us to better manage our finances.
I wrote a list (table) of all the money that we had coming in, and all of the money that needs to go out on bills and also allowing for food. Because of how tight things were I didn't allow for things like shopping, movies, going out for dinner or date nights as these were 'luxury expenses'.
My expense list looked something like this: (NB: this is an example only)
Then there were the yearly bills like car registration and CTP Greenslip (so roughly $1000 annually) which I put $20 a week away into a seperate savings account so that we had the money there when we needed to register the car.
Up until the last month, I have been paying the same amount in bills as I had done 3 years ago. But it got me thinking that IF I reviewed my current bills what potential savings could I find?
Reviewing the mobile phone plans:
The first thing I reviewed was my current mobile plan. I thought years ago (when I worked at a local Telstra Business Centre) that the best plans for value were the ones for business customers, so the last however many years I have been paying a lot when I was barely getting any value. And being in the country, I needed to have the best mobile coverage so it kept me loyal to telstra.
Turns out, if I went back to being on a consumer only plan I can be paying less a month with unlimited calls, unlimited SMS and a whopping 6 GB of data (considering I went over my previous 1GB allocation each month, this was exciting). I also was given 25GB as bonus data during my first month and I could also get an iPhone 6 for less than I was paying previously!
With this new plan, it also meant that if my husband transferred his phone account into my name, and if it were on the same bill as mine he could drop down to a $50 a month plan with 2.5GB of data (when added to my data we now have 8.5GB to use each month) and he gets $1000 in call allowance too. We saved $50 a month in my husband's plan alone, and $60 a month in mine so $110 a month in total!
Reviewing your bank accounts:
I have found before from my own personal experience and from working in a bank, that it is good practice to review your loans and bank accounts at least annually, as circumstances change it is important to ensure that the loan and products are still working the best that they can for you especially as the interest rates are always changing.
I recently reviewed our Personal Loan we took out when we purchased our car, and found that the current interest rate we have is almost 3% lower than the current rate offered.
However, while we haven't saved any money from reviewing the loan we are in the process of hoping to buy our first house and have plans to incorporate that loan into our mortgage, which will mean we save $135 each week.
It is also important to give your loans a health check to make sure that you are still covered with the protection side of things, not only does it offer peace of mind if you were to become sick, to lose your job or pass away, that if you're eligible for the protection it is worthwhile having. I know I had to use the insurance side of my loan and credit card when my husband lost his job and the payments were covered for 3 months. Going off of our loan, that was a saving of $135 a week or $1620 in total that was then able to be used towards other bills.
Credit Cards and Balance transfers:
I know how hard it can be to fall into the trap of having a large credit card debt, and no matter how much you're paying in repayments each month it still feels like you're being killed by the bank's interest rates!
I have learnt over the years how to save money on your credit card, and more importantly how to make your credit card work for the best for you. (keeping in mind that advice is general based on my own experience and you should always consult financial advice and read the Product disclosure statements)
With the Credit cards, sometimes it can feel like you can never get in front of the repayments, and when times have been tough I had a balance transfer of our credit card and it helped us save so much money! The benefit of the balance transfers is usually the banks offer a promotional period say 12 months where they won't charge you interest on balance transfers during that period.
We did this on our bankwest credit card for $5000, and we were able to budget and pay it off in a whole year! We set a minimum of $50 a week payment and if there were weeks where we had the $100, we would pay that amount.
By doing a bank transfer we were able to save ourselves paying 19% interest p.a on the credit card, and it means that we now saved ourselves approx. $915 p.a in interest!
Reviewing our Home insurance:
A few months back, I was speaking to a friend about "adult things" which included talking about insurances and stuff. She told me that she was paying almost HALF of what I am paying, and she was the same age just different suburbs.
I always put down the fact that our insurances cost more than my friends was that it apparantly "floods" and a "high crime area", so I never thought anything more of it.
So I started to shop around and get quotes, and while I found a few that were happy to offer a cheaper rate it came at the risk of "due to the known risk of flooding, we will insure your property excluding flood". Knowing my luck (since I am not THE MOST LUCKIEST person that it would flood).
So I went back to our existing insurer whom we were currently paying $3000 a year in premiums, and said we were looking at going elsewhere unless they could help us with a better quote.
They came back and said as we were only renting we could have just contents insurance. Imagine my surprise when it came in at only $612 a year! That was less than $60 a month and less than $15 a week! We were paying $250 a month before or $60 a week! So we saved ourselves over $2300 a year!!
Reviewing our Private Health Insurance:
I know in the past when things have been a little tight, my private health insurance (along with my car and home insurance) were some of the expenditures I was willing to let go. Not because I felt I didn't NEED them, because I did but because it was an expense I couldn't justify between meaning if we have insurance for this week or if we ate food this week.
There was no doubt the struggle was (and for many) real, and I know how important it is for your money to be spent in the best way possible for yourself and your family.
One thing I recently learnt, was that I needed to review my Private Health Insurance more regularly than every 5 years!
I have been with my current provider for going on 5 years, and I thought I was happy with the cover being top hospital and no extra's and that I thought at $70 a fortnight I was getting a great deal.. I was happy until a couple of recent circumstances where 1) they would only cover my chemotherapy IF the drug was on the PBS, and 2) they no longer cover aneasthetics and I had a $1000 bill from the aneathetists for putting in my port. After speaking with the aneathetists secretary she explained that my health fund WAS the only fund they have to charge to the client.
So I was on a mission and enquired through Health Insurance comparison with the type of cover I have now and what I pay, and wanted to find out if there were comparative policies that: 1. covered aneathetiscs 2. was top hospital cover and covered surgeries 3. Had a partnership with the hospitals I frequent 4. Included ambulance cover
The consultant was SO helpful and talked me through my existing policy and comparing policies that were better.
He came back with a plan through AHM that was $3 less a fortnight, included extras like optical/dental/chiro/physio/remedial massage. Or if I wanted just the extras for my husband it was only an extra $10 a fortnight of what I am paying now!
Not only has Health Insurance Comparison helped me to save a lot of money such as $1000 aneathetists bill for 1 hour for admissions I needed it... and if it were based on my surgeries this year it could be over $20,000 a year it helps me to save! PLUS the rebates with extras like dental and optical too!
Hot tip: If you are done having children and no longer require having pregnancy or birth related inclusions, remove these from your policy and you will already be saving!
Thank you Health Insurance Comparison for such a seamless process to help compare the right health insurances for myself, and for helping me to save money on future surgeries. Don't forget to compare, save and go in the draw to win a year's health insurance for free!
So while you might feel loyalty to a particular company, you also need to feel loyal to your wallets and if you can shop around and find a better deal on other areas of your financial spending (power/gas/phone/internet/loans) you can afford to go on that nice holiday, or better yet buy that pair of shoes you WANT but probably really don't need...
or better yet... do what I am doing and using all of the savings and money you would otherwise have spent on bills towards purchasing your first home!
Thank you for reading my 5 top things to review when you're living on a budget to help save yourself a lot of moolah!
Sometimes in life, things happen that can be unexpected and often out of our control. But if we are prepared and have a contingency plan in place, it can help us to navigate through those difficult times with a bit more ease.
A contingency plan, is a plan that is designed to be implemented during a future event or circumstance. A contingency plan is also sometimes referred to as a back up plan or a risk management plan.
In my life, I have several of these risk management plans that I have shared with those that it most affects, and in each of these plans it explains in detail the steps that need to be taken.
Some contingency plans you might have (or need) in your life may include:
1. A will
This is probably (in my honest opinion) one of THE.MOST.IMPORTANT risk management plans you can have in place. A will not only explains your wishes for your belongings and assets, but also can be important if you have young children to detail whom you wish to care for them in your absence.
If you have a blog or an online business (digital assests), there is also now an added clause that allows you to explain what is to happen to these when you die. You may wish to have your social media accounts closed, or request to have these left open as a memorial; or in my case I have specific instructions regarding my blog such as the hosting is to be continued to be paid and my site is to be continued to remain active for a resource that my younger sisters or anyone needing a safe place to turn to, can still do so. I even have a blog post (unpublished) and content that is to be updated to my site when I do pass away, so that others know that there won't necessarily be someone to answer any queries directly.
But your will should be updated every 2-5 years, as life happens and circumstances change, it is important that these are reflected in your will.
2. A funeral plan
You might have specific instructions in your will on where you want to be buried or cremated, or how you wish to pay for your funeral, or you might have been super prepared and met with a funeral home and have your funeral already pre-paid and planned out so that when you did pass away your family were able to grieve and be there for each other as opposed to making funeral arrangements.
I know that talking about your funeral wishes can be rather morbid, personal, upsetting and confronting to our family and friends, but it might help you feel at ease when times are tough and you are battling some serious health obstacles that you know your wishes are known.
For me, I know this is something I have done, and it was really hard being only 24, but the reality that I am faced with is one that is uncertain and I know when the going gets tough that this is a plan that might need to be actioned.
I have told my husband (and have it in writing and in my will) that I am to donate my body to science due to my rare disease and progression of said disease so that they can use my body and tumours to study and hopefully I can be part of a cure moving forward. I wish for my remains that aren't needed to be cremated, and for a joyful ceremony to be conducted at the botanical gardens where everyone is to wear bright and happy colours, and where it will be a celebration (a memorial service as you will) rather than a saddened atmosphere.... after all, I am a happy and bubbly person!
Up until I got sick, I had always wanted to be an organ donor. But knowing now that my organs and body parts wouldn't be able to be used by another I decided instead to donate my body to the organisations studying my disease and making a cure.
3. How you will pay your mortgage and bills if you were to lose your job?
When you take out a loan, credit card or mortgage you will be asked if you wish to take up loan protection. A lot of people are reluctant as they see it as an additional expense, and in truth we think that our jobs are secure and we are safe.
The reality is that you can never be too safe or secure in a job, and from my own personal experience it is something I realised was important to have in place.
My husband and I had always had protection on our loans in case we got sick or lost our jobs and was arranged through our loan provider. We had this for one of our car loan. Then in early 2012, I found ourselves applying for a quick fix finance loan for $15k to consolidate a couple of credit cards and a loan I had to take out to pay for my colonoscopy (which was $5k).
My husband and I thought we were safe in our jobs, he had been working for a national company for 5 years and I working for a bank for the past 18 months. We were on really good incomes and planned to only have this loan for a couple of months so we could pay it in one loan and have a bit more breathing room. Because we only planned on having it temporarily we declined the loan protection.. our interest rate was 40% so we knew it needed to be paid quick smart.
Three days later, I was told my contracted hours were being reduced from 24 to 4 a week due to the bank doing a massive job cull and reshuffle and there wasn't the hours there.... it was okay, I knew we would be fine as we still had my husband's job...
The next day we got a phone call saying his employer had gone into administration and that they were closing in a month.
HOLY CRAP! We now had $15k of debt that wasn't covered and we had no idea how we could make the repayments at 40% interest... we regretted the decision 4 days earlier to decline that loan protection.
4. What were to happen if you were no longer able to care for yourself and you needed to move into a residential facility or home?
I know we often don't like to think of what will happen when we get older, or what were to happen if we were to become permantly incapacitated, but this is a plan we should certainly talk to our family about and express our wishes while we still can.
While we might want to always stay living our life out in the home we love surrounded by family, this might not always be as easy as we wish. If there is round-the-clock medical care we need this can become rather expensive to organise to happen in your home and it might be easier on ourselves, our family and our carers if we were to live in a residential facility where we had the help and support we need.
It is also important to consider the safety aspect, will this be safer for me as a long term plan? And the finance side of things needs to be discussed to, whether you can afford it or how you plan on paying it. This could be something you incorporate into your retirement plan to accomodate for additional later-in-life medical costs.
5. How will you or your family survive if you became sick and unable to work or if you unexpectedly passed away?
I decided it was best to leave the most important contingency plan for last, which is of course, talking about our life insurance.
We protect our homes in the event of flood/theft or fire, and we protect our cars in the event of a crash, but surprisingly we often don't think about insuring number #1 (ourselves). I know I thought of insuring my husband before I decided to insure myself, which by the point I enquired I was 19, recently diagnosed with FAP and was told that if I "got to 40 without cancer and had a total colectomy, I could then be insured".
I always assumed that life insurance was only of benefit when we died to help pay for things like our mortgage or help support our families.
Today is World Ostomy Day, a day celebrated worldwide through a social campaign "Many stories, One voice" and using the hashtag #MyOstomyStory.
I first joined the ostomate club back in May 8th 2013 after a 6+ hour operation to remove my large bowel, most of my rectum and to have my permanent ileostomy formed. It was probably one of the hardest decisions I have had to make, I was only 21 when I was told my bowel was showing early signs of turning cancerous and that I only had mere months to have it removed before it had fully turned and spread, which by the point of the surgery I had just turned 22 (read my story here).
While it was hard to go into my surgery excited (or OSTOMISTIC as I put it) as I didn't know what life as a young person (especially a female) would mean after I had an ostomy, but little did I know it was one of the best decisions I could have made.
I am aware that there are many reasons people get a stoma and while these aren't always planned surgeries and can be done in an emergency situation, or that there are some that are permanent and some that are temporary, I think it is important that we celebrate ourselves and our ostomies, as I know without mine I wouldn't be here today. And for that I am eternally grateful.
Stoma tips and life-hacks: #1. Keep Hydrated
This might be something you hear a lot, but it is so important when you have an ostomy (and even when you don't) that you keep your body hydrated at all times, especially in summer. But when you have an ostomy you are at greater risks of dehydration and dehydration can also cause fatigue. I have also been told by my stomal therapy nurses to drink an electrolyte sports drink at least once a day to help replace the salts and minerals that my body is losing. I drink a 1 litre drink of this a day plus a couple of litres of water. But I know when my body is feeling dehydrated (and especially when my output is more watery I get tired, really shakey and have no energy. Read: my tips on avoiding a watery output
#2. Your boobs become a valuable asset
An important thing to remember when doing an ostomy bag change is that in order to get the most out of the bag and to prevent leaks you need to a) have a good seal and b) you need your bag to be sticky... so whenever I do a bag change the first thing I do is put the bag I intend to use tucked under one breast, while the seal/mouldable ring (I use coloplast mouldable rings) is placed under my other boob. I sit there for at least 5 minutes before starting the back change process so that it has time to heat the glue. Reason I use my breasts is that my stomal therapy nurse in our first consult told me "placing under your boobs is one of the warmest parts of your body and makes things more stickier". If you don't have boobs you can utilise, read the next tip.
#3. Invest in a hair dryer
In all honesty, the very first time I bought a hair dryer in all my life was the first day I was home after being in hospital from my bowel surgery, I remember sitting on the toilet naked and crying as I was about to do my 10th bag change for the day, I was sore, my skin was sore and I was like "f#$% this, I can't do this anymore". My husband kept asking "what can I do to help" and as it was middle of winter and cold I couldn't produce enough body heat to keep my bags sticking... so my husband had the best lightbulb moment ever and ran over to the supermarket and purchased the most decent looking hair dryer they had (from memory was about $20) and he plugged it in and sat there heating the bags up... they became so much more sticky! I now take my hair dryer everywhere with me!
#4. You'll find many uses for your hair dryer
Apart from your hair dryer being used to make your bags more stickier, I also use mine to help dry my bag after a shower especially when I don't need to do a bag change. I am one of those people that can get a few days out of each bag so I just sit there for about 5 minutes after my shower drying my stoma bag and stomach. Also, it is great to use in winter to quickly warm up your body after a shower, I don't know about you but where I'm from it gets so cold in winter!
#5. Avoid foods that cause blockages
One thing you really don't want when you have a stoma is a blockage, trust me when it is not only painful but is rather scary. There is a list of foods that you should avoid because they don't break down or they often would in people who have all their bowel. I remember when I first had my stoma I had a craving for Hawaiian pizza (Ham and pineapple) and imagine my horror when out come pieces of pineapple whole! Same goes for peas, corn, nuts, coconut and some foods like celery and tomato also don't break down. Your stomal therapy nurse can provide you a list of foods to avoid.
#6. Avoid foods that cause winds
Foods, when you have a stoma can a bit of a nuisence whether it is foods that cause blockages (mentioned in #5) or these can cause wind. Wind, when spoken about when you have a stoma is referring to your stoma farting.. and sometimes it can be rather noisy (when you don't want to be noticed for the girl with the farting tummy), or cause your bag to fill up quickly with air (sometimes so much your bag literally pops off or explodes). Although, sometimes stoma farts can't be avoided and just happen. But my husband is so sweet, when we are in a meeting and my stomach farts and I start turning red he just makes noises or coughs to draw the attention away... what a sweet heart!
#7. Avoid drinks that cause winds
Foods aren't the only reason for wind or fart production coming from your stoma bag, what you drink also plays a big part. Foods that are fizzy and gassy or alcohol can also cause wind. I also find after I have had aneasthetic from a gastroscopy, ERCP or from other surgeries that my bag fills up with more gas too.
When out and about: #8. Take your stoma supplies kit everywhere you go when you leave the house
This should become part of your routine, I have two stoma kits one I keep in my bathroom and the other is a smaller and discreet version I keep in my handbag. Trust me when I say that when you don't have your kit on you, you'll probably experience a bag leak. I know my worst bag leaks in public have been when I didn't have a kit on me and it was horribly noticable through my clothes. Was a horrible and traumatising experience and one that brings me to my next piece of advice...
#9. Always pack a spare change of clothes
I find if I am going to a conference where I will be gone from 8am to 6pm or when I was doing studying on campus at Uni (and can even apply for work situations), have a big day of shopping planned or spending a good part of 16 hours travelling to Sydney to see specialists and driving home, I always take a change of clothes. I at least pack one change of pants, a shirt and a pair of undies. Thankfully, I am a bit of a crazed nut when it comes to my clothes and I have 4 pairs of the same pair of jeggings and they are the most comfortable versatile pairs of pants I have ever owned, so thankfully it just looks like I change my shirt.
#10. Jeggings or any elasticised pants will become a staple in your wardrobe
I wear jeggings... there I ADMIT IT... and I am not ashamed! Thankfully my jeggings actually look like jeans and are almost as thick so you can't really tell, but I found it so uncomfortable to wear pants with zippers and buttons, as I found they always sat RIGHT.ON.MY.STOMA and when my bag would start filling up either the bag would explode and I would be left in an embarrased heap, or it was rather uncomfortable. I love my jeggings that they are elasticised waist and can wear them up higher over my stoma and much more comfortable.
#11. Baby wipes aren't only used for babies
I know what you choose to clean your stoma comes down to personal preference, I know some prefer to buy some chux sheets and cut up to use as a rag for cleaning your stoma, or others use wet toilet paper.. but personally I prefer baby wipes for a number of reasons. Firstly, they come in handy travel packs that can fit in your handbag; secondly, they are always wet and if you are out and about and don't always have access to water it is handy; thirdly, I am sensitive to how things feel on my skin and find baby wipes are much smoother where I find cloth rags are rough and scratchy. I use huggies shea butter baby wipes and have for years. I also sometimes (when at home) sit the wipes in a small container of warm water to remove a lot of the chemicals and to water it down. But most of the time I don't bother.
Stoma kit advice: #12. Add scented garbage bags into your stoma kit
For the first couple of bag changes I was relying on using plasic shoppings bags to dispose of my stoma bag, and my husband wanted to try something when shopping one day and found these scented garbage bags that are small in size, and not only do these help to mask the smell of the contents of the bag when doing a bag change, but if you happen to be somewhere that there isn't an immediate place to dispose of in the bin and need to carry it in your handbag, it is discreet and you won't smell it. Just double bag it to ensure one layer doesn't pierce and the contents goes through your handbag.
#13. Invest in some sort of room spray
Have you ever emptied your bag when you're in a public rest room, and you feel so embarrassed by the smell coming from your cubicle that you hide and hope no one realises it was you when you emerge from the change room? Well if you have, you're not alone. So many times I was left feeling embarrassed that things were a bit too smelly and spraying toilet spray (if you're carrying a whole can around in your handbag) can not only be bulky but just as noisy... so I have the perfect pocket sized solution for you that was given to me as a Christmas gift last year, it is a thing called Room spray by scentsy and I have it in my handbag and in my stoma kit and promise there is no more embarrassing moments in public toilets! You can read my review of it here!
#14. Always have at least 3 of each item on hand in your portable kit
I have developed a bit of a rule when it comes to my stoma kit that I have with me in my handbag, is that I have at least 3 quantity of each item in my supply kit (excluding my scissors, stoma powder). So I have three stoma bags (in case I have more than 1 leak or accidentaly pierce a hole when cutting out the hole), I have a handful of adhesive wipes and barrier wipes, a handful of the brava elastic tape (banana wafers I call them), 3 mouldable rings and at least 6 of the scented garbage bags (in case I need to double bag, or a bag gets a hole in it). Here is a guide and checklist I wrote for when packing for a holiday with a stoma!
Storing your supplies at home: #15. Have a cupboard within a reach of your toilet
I learnt very early on, how much of a hassle it is when you need to do a bag change and you're stuck sitting on the toilet home alone and can't reach your supplies. I was lucky that I have a large bathroom which could perfectly accomodate a cabinet that fits in between the toilet and the shower, which I have filled with stoma supplies. It also acts as a bench/table for me to lay out my supplies I need to use too. And to the untrained eye, guests just think it is a towel cupboard! But I do know not everyone can have a bathroom that is as accomodating, so you could look into getting a portable trolley with shelf space underneath and a flat table like top and you can wheel it into the bathroom when you need to use it, and when it's not in use you can store in the linen cupboard or wardrobe etc.
#16. Never wait until you're on the last handful or box of supplies before you re-order
Postage can always be unpredictable here in Australia, so I find it is always best to have a buffer when you need to re-order your next order of supplies. I find once you are almost at the last box to order your supplies that way you can allow for any delays in postage arriving, or if you have any unexpected bag leaks.
Mental preparedness and a stoma: #17. When doing a bag change play some music
I know sometimes I get rather flustered or overwhelmed when doing a bag change and especially found this was the case when I first had my surgery. I now have it as a part of my bag change routine that I have some music playing in the background which helps me to feel calm. Others might find that by playing a movie or tv show on their ipad/TV can be a pleasant distraction too.
#18. For me, my life truly began when I had my stoma surgery
I know that it is very easy to fall into the trap of thinking pre-surgery that your life is over and that you won't be able to live a normal life once you have a stoma. I know I was guilty of thinking this way, but my life honestly was given back to me when I had my stoma surgery. Before my stoma, I would be house bound because I had irritable bowel and always needed a toilet near by but also that going to the toilet and eating was a very, very painful experience. I can now enjoy going places, going out to dinner eating foods I once couldn't eat and I have more freedom now. I have control back over my life and my bowel was no longer defining me or what I did in my life. Although there is the chance of bag leaks when out and about and there is more involved when you go 'number 2' these are manageble and long term think of the how much life you were missing out on!
#19. If he truly loves you, having a stoma won't matter
I know sex and a stoma are two taboo subjects, but just because you have a stoma doesn't mean you won't ever be intimate with your partner or husband ever again, and if he loves you he can look past the stoma and not make you feel insecure about having one. Just because you have a stoma doesn't mean you're no longer considered sexy or attractive, you just now have a new adaptation to your body. If you feel insecure or conscious about your stoma during intimacy, there is lacy bag covers you can wear or put a towel over your stomach. But no one if they truly love you will make you feel ashamed for having something that saved your life.
#20. You can still swim when you have a stoma
When I first had my surgery, I was a bit saddened during summer when everyone was going to the beach and enjoying the water or swimming in the pools, I was worried because I had a stoma that this wasn't for me anymore. I was worried the bag would fall off during swimming and would be humiliating, but when I eventually realised I can go swimming I was so much more happier. While I admire those who can rock a stoma and a bikini, I don't quite have the confidence yet to do so (or have a bikini body) but I feel more safer and secure wearing a one piece that has a lining in the stomach area and I feel this gives me more confidence when swimming and isn't a noticable giveaway that I have a stoma. I also love doing water aerobics and find it is much enjoyable for me having a stoma than exercising and sweating and my bag becoming unstuck.
[end of advice]
While, I have so many more tips to share than just 20, I thought that 20 would be enough for now and to help you get some tips at your fingertips. But if you have some other stoma hacks or tips you wish to share, feel free to comment these below!
When it comes to gift giving and finding the perfect personalised gifts, I seem to have a nack for finding those perfect gifts that will have people talking about, especially if there is a story behind receiving the gift.
Originally, I was planning this post to promote in the lead up to Father's day... but as this is now only a week away I realise it could be best represented as a general gift guide for Christmas (which someone reminded me yesterday was only 119 days to go), for a birthday coming up or for Father's day whether it was a belated 2015 gift or planning ahead for 2016.
Either way, I have sourced some pretty awesome gifts that I know any dad or husband would love and appreciate.
BEST OF ALL these are made here in Australia by small businesses and some are even handcrafted/handmade. I love supporting the little guys in business, who are working hard to support their families and helping us all to add something unique to our lives.
Here is my list of 10 personalised gift ideas your dad or husband would love!
The range of Quote/name prints available at Ollie's Room are a perfect gift to not only brighten up a room, but pop it in a fram and you have a special keepsake!
❖ Each print can be personalised with a name or custom writing* and can be personalised with 2 colours.
❖ The name 'Dad' can be changed with any name you prefer
❖ Professionally printed on 260gsm weight archival paper which should last around 30 years
Available in the following Sizes: ❖ 20.32cm x 25.4cm (8"x10") ❖ A4 Size - 21.0cm x 29.7cm (8.3" x 11.7") ❖ A3 Size - 29.7cm x 42.0cm (11.7" x 16.5") ❖ A2 Size - 42cm x 59.4cm ( 16.5" x 23.4")
Frame not included, you are purchasing the print only. *A fee may apply.
Turnaround: As each print is individually personalised and professionally printed by our printing company, delivery times to you can take 2-3 weeks (approximately). If you wish to purchase express postage. Please contact us before ordering.
The Man Stand is the perfect gift for any guy who needs a place to store those things he only wears when going out. The Man Stand doubles as a iPhone or iPad dock and will keep all his things ready to grab when walking out the door.
❖ Store (& Charge) an iPhone or iPad.
❖ Store a wallet & Watch
❖ Hook for Keys and a Slot for Pen
❖ Cut out for coins or wedding ring.
The Stand is adjustable and can be set at different heights for reading or watching movies. The Stand also folds flat so he can take it away on holidays or business trips.
Excludes accessories shown in picture for demo only, the demo images show Non-Personalised Man Stands. Non-Personalied Man Stands are $33 + shipping.
Turnaround:Include a personalised message on your Man Stand, see their Fb page for examples. Please allow 7-10 days for personalised products.
If you've got some beautiful photos of your children and want to create the ultimate personalised and keepsake gift, then look no further, as I have found the solution... Zelsk! Based in Brisbane they ship all over Australia.
Some of their unique gifts pictured include (and not limited to):
❖ Funny/Punny wine labels for dad starting at $8.50 (Wine bottle not included)
❖ A4 120 piece puzzle of 6 of your images $21.50
❖ MDF glossy puzzle of your image $28
Not pictured are:
❖ Personalised Dad's swear jar ($ to be confirmed) ❖ Set of wooden Photo coasters ($ TBC) ❖ Personalised photo mugs ($ TBC) ❖ Personalised photo clocks ($ TBC)
Turnaround: Orders and the online store is closed until 7th September 2015, but like their fb page to be kept up to date when the store re-opens and their exciting new rebrand too.
Heat packs are a perfect gift for Dad, Grandpa or your husband. Created in a range of designs (pictured). Available in one size – approximately 28x19cm!
Personalise it on the front with any name (eg. Dad, Grandpa, Uncle, Poppy, etc) you’d like in and as these are printed on both sides and the pattern wrapping seamlessly all the way around, you can add a personal message on the back with who the heat pack is from!
The heat bag is made entirely of 100% cotton. Filled with raw long grain rice, and organically dried lavender. A beautiful, soothing & divine scent to smell, as well as staying warmer for much longer.
Easy to use and quick to heat up! Perfect for aches, even lovely to pop into bed to take off the chill. Lavender is calming so will enhance a great nights sleep. Or to chill – Put in a small plastic bag & pop into the freezer. It won’t freeze like a block of ice, instead the grains of rice become super cold & very pliable.
Turnaround:As these are all individual and personalised, they are made to order, please allow approximately 3-4 weeks from the date of order for delivery.
The 10 most awesome personalised gift ideas for Dad continues after this image.
#6. Personalised Wrapping Paper | Love JK from $7.95 + shipping
We all know how much love and precision goes into wrapping each present. What if I told you that you could have PERSONALISED wrapping paper with YOUR OWN PHOTOS and it is conveniently shipped the next business day from Melbourne! How good does that sound!
Give your gift the WOW factor by ordering your very own wrapping paper which comes in a range of sizes starting at 43cm x 1m and ranging to 43cm x 5m lengths of paper.
Some product information at a glance (see their website for more detail): ❖Printed on 88gsm high quality photo matte paper ❖Paper is bright white in colour, and photos print beautifully ❖Printed edge to edge (Borderless) ❖Rolls are shipped in a sturdy protective mailing tube and protected with tissue paper
Current turnaround: Orders are shipped next business day excluding Australian and Vic Public Holidays.
Show Dad how much you care on Father’s Day, his birthday or Christmas with a laser-engraved 500ml Beer Mug! Have his name and a special message engraved for a personal gift your Dad will love and no doubt cherish.
Each Beer Mug or Beer Stein is professionally laser engraved with your selected artwork or custom image. Best of all, all artwork is completed free of charge with unlimited revisions!
What makes this the perfect gift for your dad, is that it is practical but also more memorable than a tie or gift card... it is a gift he can cherish and show off for years to come.
Besides, I am sure it will earn you the Child of the year award too, not that it is a competition or anything with your siblings (but if you're a competitive bunch, this is a must).
Turnaround: Your gift will be on its way to you in only 5-10 working days, even faster if it is urgent.
This gorgeous wooden wall hanging is made from bamboo and is finished with a light natural wax to enhance the natural colour and grains of the bamboo. This plaque measures 19cm x 23cm and is 2.5mm thick. It also comes with natural twine so is ready to hang.
Please note that as Bamboo is a natural product, the colour and grain may vary slightly from the images shown here.
This beautiful wall hanging is designed and made in Australia.
Current turnaround: This will be shipped approx. 1-2 weeks from the time of order
Does an important man in your life love playing the guitar? If so this personalised metal guitar pick is not only the perfect gift but a unique keepsake as well.
Available in your choice of:
❖ Sterling Silver
If you're looking for the pick on it's own and not on the keyring, LOVEnCherish have a range of metal picks with and without key fobs. Pricing varies on design, but a sentimental gift that will be loved and cherished over the years to come.
Each pick can be personalised too with a name or date.
Turnaround: Orders are processed in order of date of payment received. Regular custom orders take up to 2-3 weeks to be made and are then posted out via registered post (Australia only).
I hope you've enjoyed finding some new products and businesses to browse, I know I already have some of these gifts in mind for the important men (my pop, uncles, brothers, and of course my hubby) in my life.
The main drive behind this post was a rather personal one. In the lead up to Father's Day this year, I (like every year since my dad passed away) felt a bit sad. But this year I decided I would do something different and I decided I would go searching for items I would have bought for my dad if he were still with us; and with those products and businesses I found, I would then pay it forward by doing a little gift guide for dad and promoting these businesses.
Disclaimer: The businesses I featured above were businesses I have come across through my own findings and thought they were pretty awesome not to share. I simply wanted to create a gift guide to help with buying gifts for your husband, dad or grandfather (even your brother too).
I recently had a brain MRI as I was experiencing recurring symptoms I had when I was first diagnosed was arachnoid cysts on my brain in 2009, so as the symptoms had returned (the headaches, hearing loss and vision issues) I thought it was best to have a repeat MRI. The scan confirmed that the cysts that had been fenstrated (drained) back in 2009 had returned and were as big as they were then, and after consulting with my brain surgeon we agreed to monitor it for 6 months as this is the least of my conerns right now health wise.
My most recent MRI scan showing my brain (yes I do have one) and the cysts
So I had a reader message me after my scan, sharing that she too was going to have an MRI but she was feeling a bit concerned as she didn't know what to expect as she hadn't had one before, so she asked if I could share my experience and any tips to help her prepare.
What to expect when you need an MRI scan
& how to prepare for one in 10 easy steps!
What is an MRI machine?
MRI stands for Magnetic Resonance Imaging, and according to Better Health Channel it is a scan used for diagnostic imaging that uses a magnetic field and radio waves to help view what is going on inside your body, but is more commonly used to look at soft tissues (such as organs, and muscles) that don't show up on an X-ray.
An MRI also takes high resolution images of soft tissues and the picture is more clearer than a CT or X-ray.
How does the proceedure work?
You will be asked to lay on the scanning bed, which moves and slides you into the MRI tunnell. Sometimes (depending on what part of the body is being scanned) they will strap down or put a cage around the area so you don't move that part of your body, reason being if you move at all the images become blurry and you may be asked to re-do your scan. When I had my brain MRI they put this cage/mask over my head and secured it to the table so I couldn't move.
Some scans can take up to an hour to complete, and the tunnel you slide into is very small and it is normal to feel a bit claustraphobic as well, but there is an intercom inside the tunnel and you're given a button to press if you need to speak to the imaging technician.
The machine is also very loud (can be compared to that of a jackhammer), so you may be given ear plugs or ear muffs to wear. Some machines also have headphones that play music.
How much does a scan cost?
As the MRI is a specialised pieces of equipment it is also very expensive to run. Depending on the reason for the scan or where you're getting the scan done at can influence the price of the scan. Medicare (is the system we have here in Australia) bulk bills in some cases, but most of the time there could be an out of pocket expense. But it is best to ask when making your appointment what costs will be involved. One MRI I had in 2009 cost $685, so it is best to check up front.
Some places may also allow you to pay the gap and charge the rest to medicare, but as I mentioned before it is best to check with medicare and the imaging place what costs will be involved.
Can anyone have an MRI?
While most people can have an MRI, it is always best to check with your doctor or the radiologist if you have any concerns. While it is considered a safe procedure, some people may not be able to have the scan if they have a pacemaker or any implant, any metal in their body (that can't be removed) or people who are pregnant. It is always best to check with your doctor though if you have any concerns.
How to prepare for an MRI in 10 steps: #1. You will be asked to not have anything to eat or drink for at least 4-5 hours BEFORE the scan, but this can vary depending on the part of the body being scanned or the time of day. It is important that you follow the fasting guidelines to ensure the best result of your scan. #2. Allow at least an hour for the scan, and allow for additional time involved if they are running behind schedule or if you have paperwork you need to fill out. #3. Remove all piercings and metal from your body, if you have any internal implants or metal objects it is best to tell someone immediately BEFORE having your scan. #4. You may be asked to remove all clothing and put on a hospital gown, this is incase there is any metal on your clothing such as your bra, studs on your jean pockets or a zipper etc. NB: Wear comfortable loose fitting clothing that doesn't have any metal to avoid having to strip down into a hospital gown, but not all practices will let you wear your own clothing either, so always ask. But I always wear tracksuit pants and a loose t-shirt when I have any scans. #5. Turn your mobile off or to aeroplane mode before your scan #6. If you find yourself feeling claustraphobic in confined spaces, it is best to tell someone before your scan. They can sometimes offer a sedative or anti-anxiety medication to help you relax. Otherwise if you know how to meditate and if it helps relieve your anxiety you can practice that. #7. If you have an iPod or phone with music on it they may be able to play this for you and you can hear it through your headphones. The machine can be really loud with a lot of banging and clicks (sounds like a jackhammer). #8. If you don't wish to listen to music and want to try to meditate or have a nap bring a set of ear plugs. #9. Pack some panadol if you're prone to headaches which are brought on by loud noises to offer some relief after the scan (consult with your doctor first if panadol is right for you) #10. It can be quite cold in the scan room, so bring a pair of socks to wear on your feet to help keep you warm. You may be offered a blanket too.
ONE thing I like to do after my scan, is to go for a nice lunch or coffee with a friend. Not only does it help ease the anxiety I feel while waiting for my results to come back (can be a couple of days) it also is nice after having had starved all day prior to the scan.
These tips are based on my own experience of having multiple scans, and I am sharing to help you in the lead up to your own scan. The scan isn't invasive and no need to be scared of the scan. But it is perfectly normal to be anxious about the results, I know I usually am (especially when waiting to review my tumours).
As always, if you're needing to ask a question you can always connect with me through email or via facebook. Please remember I am no Doctor, so it is always best to consult with your physician as your first point of contact. I am only sharing my experiences on this topic.
You may also like the following topics:
* PET scan and what is involved
* CT scan and what is involved
* Thyroid biopsy and what to expect
* Breast Mammogram, biopsies and what to expect
p.s If you find my tips and blog helpful, please take a moment to vote for my blog in the Heritage savvy bloggers competition. With your help I (and if I win) I am starting a new support website (and app) to help other young people who live daily with a chronic illness. By taking a moment to vote not only will you be helping me to help others but I am confident that this website will change the lives of many (and if you're in Australia you could win $100). Please remember to confirm your vote via clicking the email they send (check your junk/spam too).
I have been thinking a lot lately about my life and especially my health and what I have gone through and learnt. One thing that keeps popping into my mind is just how much being sick affects every aspect of my life!
When you think about it, being chronically sick interferes with your physical, mental, social, spiritual and financial health. I know my bank account has taken a massive hit since I had to stop working almost 3 years ago and with the never ending medical expenses (scans, blood tests, doctors fees, surgical fees, hospital excess fees). I also know people stop inviting me places because I often cancel last minute because I am stuck in bed, in pain and unable to drive (and have no one to drive for me).
I know a lot of people only associate health with just being physical, but I wanted to bring the attention to our health being holistic and incorporates the several key aspects of our life.
Here are some ways we can make small, manageable changes to our health:
Try to do at least 10 minutes of walking 2 times a day, start off small and gradually build it up. They suggest doing 30 mins of walking a day. But start off doing what you can handle.
My hubby won a free fitbit through his work, and he has been using it for almost a year now and loves it. He wears it everyday and he isn't happy until it celebrates that he has reached 10,000 steps. Even on his days off he will offer to walk home from the shops so he can get his count up. It has been a good way for him to improve his health as he is competitive and it makes him want to work more (and in the end earn more sales and bring home more commissions)
Find a hobby, especially one that is reliant on you using your hands to build something not only will it act as a distraction but it will also help you to feel accomplished by building something or making something... something you can say "I made that".
When I was first diagnosed with FAP I wasn't coping AT ALL. I was trying to come to terms with my dad being terminally ill and the stress of what was in store for me was too much. I quickly found myself in a downward spiral and started doing creative things to help me cope. I always had loved scrapbooking and craft, so I started doing card making classes. I realised there wasn't any handmade invitations out there so I started a handmade business which kept me so busy! Within days my husband had commented on how much I have changed and seem happier and it has been my saving point the last 4 years. I know when I am in hospital for lengthy stays I feel myself getting a bit depressed and once I get home and start making things again I feel myself feeling more content and happier. For me it works!
Spiritual health isn't just solely based around your religious or cultural practices or beliefs, spiritual also involves your own personal beliefs and values. If you are someone who believes in Karma and the importance of doing a good deed, set yourself a challenge to do one selfless act at least once a week where you are doing something good for someone else. It doesn't mean necessarily footing someone's entire grocery bill but could be something as little as sending a card and gift voucher anonymously to someone you know who isn't coping well with life lately, or walking up to a stranger in the street and giving them flowers. Or asking the cashier to use the change from your groceries towards the next person's.
There are so many ways you can perform selfless acts, and it will make you feel better about yourself by bringing jo and happiness to others.
It is important when you're chronically sick to have a support network of not only family but of friends too. I know it can be hard as someone who is an introvert and suffers social anxiety on top of being sick to suggest to make changes. But think of it as making progress towards improving this aspect of your health rather than the word "change" which can seem daunting.
Some things you could consider is if you're not well enough to go out to a restaurant, organise a little lunch or morning/afternoon tea with your friend and catch up over coffee and cake. You could even join a group of people with like minded interests or hobbies, or volunteer somewhere.
Or if you're anything like me and enjoy writing things down and helping others, you could always start a blog. It is a great way to connect, network and meet new people, while predominately online there could be blogger meet ups in your area or workshops you could attend or conferences.
I am heading off to Problogger and there is an estimated 700 attendees so I have 100 promo handouts for my blog and will challenge myself the task of talking to and introducing myself to 100 people over the course of 3 days... as someone who is an introvert and suffers from social anxiety I AM SHITTING MYSELF!! (gotta laugh that it is quite literal... stoma humour)
There are some people that can save really well, then there are others (like me) who have been using shopping as a way to deal with my emotions (bad, BAD habit to have). So instead of calling it saving, change your mind set of creating financial targets. If you work out a small or achievable amount you could save each week, after 6 months or a year you will have more money than you realised.
Even saving as little as $10 a week will give you little over $520 for a year (plus whatever interest you made) or as little as $20 could be an extra $1000. Do that for 5 years and you have earnt yourself over $5000 (plus interest, I suck at maths so don't ask me to work out compound interest). To help remind you to transfer the money, either do it once your pay comes in and you pay your bills or write on a calendar $10 on each Wednesday to remind yourself to transfer it. If you can afford $50 a week to save, then you will have $2600 (plus interest) each year!
We can all do little changes to start improving our holistic health, and hope that I have given you something to think about on how you can start 'progressing' towards better health.
P.S if you have any suggestions or ways that you improve your health through small changes, please leave a comment and share ideas for others reading.
NB: This post contains the word 'shit'. If you'll be offended by the use of the word, please stop reading now.
Sometimes when things go horribly wrong, all you can do to keep yourself from breaking down and crying is to just laugh... this was a scenario I found myself in this week... and after all 'shit happens'.. in my case quite literally!
You see, I was invited to Melbourne this week for an exclusive bloggers workshop and was amongst the company of some of my blogging idols and heroes (even being in the same room let along being invited to the same event was pretty huge for me personally).
But what is one thing that can go wrong when you have a stoma... and something that you only ever think you're being overly paranoid about when in public?
If you guessed having a huge bag leak then you guessed correctly!
I was halfway through a 4 hour meeting/workshop when I quickly ducked off to the toilets only to realise that my bag had started leaking and was causing a bit of a mess. Of course the toilets were all the way down stairs and my stoma kit was all the way up in a seperate room (where everyone's bags and luggage was kept).. so I was sitting in the disabled toilets panicking thinking "shit, what the heck am I going to do?".
See I knew if I was in the toilet too long it might look suscpicious, or it might be even more suspicious if I ran upstairs grabbed my stoma kit, ran back downstairs and spent the next however long doing a bag change... so I realised where it was leaking and the bottom part of the bag that you close up was no longer sticking closed, so I emptied it, gave it a bit of a clean with some handtowels and ran upstairs.
I then did a bit of a McGyver trick and got the elastic tape (or I refer to them as banana wafers) and taped the bag closed.
I returned to my meeting and resumed my seat until the intermission (when everyone was mingling over wine, cheese and appetisers) I raced downstairs with my stoma kit and DID THE QUICKEST BAG CHANGE IN MY HISTORY OF HAVING A STOMA. No joke. It was the quickest change I have ever done, and thankfully no one noticed I had gone to the toilet for a second time in only a short period of time.
But it made me realise that I could have been better prepared and in hindsight I realise how, and I hope to share 5 ways to be better organised for when shit strikes...
5 ways to be better organised for a meeting/work when your stoma bag leaks
#1. Inside your handbag, briefcase or laptop bag have a seperate clutch or toiletry bag, that is dicreet and doesn't look like a toiletry bag and inside have enough for 1 bag change. So when you need to duck off to the toilet just grab your clutch and own how discreet you're being. Even if you don't have to take care of a bag leak, at least then you are prepared for when the moment strikes and you need to transform into a stoma bag changing Ninja!
#2. Always get to your meeting earlier than expected to so that you can allow time to go to the toilet and empty your bag, as nothing is more embarrassing than trying to excuse yourself from the meeting and as your bag is full and you apply pressure standing up your bag more or less bursts and it can be rather embarrassing (this has happened to me before when I was studying on campus).
#3. Always have a change of clothes or underwear with you. This one can be a bit hard if you only have a small handbag, thankfully I have a larger tote style handbag that is big enough to fit a change of clothes in. But if you have a locker at work or school/uni always have a spare change of clothes on hand, so that you are ready for when you have a bag leak and you don't have to go home in poo stained clothes, or sit in soiled clothes for the rest of your shift.
TIP: If the toilet in your bathroom at work has a cabinet under the sink, leave your spare change of clothes wrapped up in a plastic bag or within an enviro bag so that you don't have to walk all the way out to your desk to retrieve your clothes, it can help you be more discreet. The same can go for places where your meeting or workshop is at, leave your stoma kit/change of clothes in the cupboard as a precaution. Just remember to collect it before you leave!
#4. Always carry some scented garbage bags in your handbag and stoma kit, so that if you have to dispose of your bag and there isn't any bins around and you have no choice but to carry your soiled stoma bag in your handbag until you can find a bin to dispose of it in.. at least it will help mask the smell a bit. Just soon as you find a bin, dump that shit (LITERALLY).
#5. If you have had to leave your meeting and people notice you have been gone for a length of time and start commenting (and rather then saying what really happened, unless you want to) just pull out the period card... no one especially men will ask more questions and your female co-workers will just look at you with an empathetic tone that says "I totes get how you feel".
I really, really hope that no one finds themselves in any situation where you have a bag leak in public, let alone at work or in a meeting. But I hope that this guide helps you to be better prepared for the worst case scenario. And by having these measures in place, it will help you to be more calm and collected when the 'shit hits the fan' and also helps put your mind/anxiety at ease.
p.s have you ever found yourself in a situation where you had to do a bag change or had a bag leak and it was the worst possible timing? If you are brave, feel free to share your story in the comments below. You can always post 'anon.' by simply writing this instead of your name.
In life, we all have our regrets and in hindsight wished we could go back in time and with the knowledge that we know now and not repeat the same mistakes again. I have many of these moments where I wished I did things differently or better and one of them was going to see a financial planner when I was 18 or 19 and something that was in place before I was married.
You see, not long after my wedding my dad broke the news that he was terminal with bowel cancer and that his type was caused by a rare disease called Familial Adenamatous Polyposis (FAP), which was caused from a mutation of the APC gene (a tumour supressor gene) and that it was also genetic. I underwent tests and was confirmed that I too had this disease, and as I was a newlywed I decided to apply for life insurance and was rejected on the grounds of the condition and as it is something that I have seen numerous insurers about and none can find an insurer willing to insure me as I am at high risk of cancer and more than likely will die earlier than healthy/normal peers my age.
Then I got sick in 2012 with severe endometriosis and required surgery to remove a 15cm round mass off of my ovary along with the lining of said ovary and removing/excising hundreds of sites of endometriosis. My surgeon said it was one of the most severe cases he had seen and especially in someone who was only 21. Because of the extent of the damage I was placed in a medically induced menopause which was truly horible. It made me so sick I was unable to work as I had these insufferable migrains and the nausea and hot flashes were cruel.
The week I stopped working was the week I was told that my bowel was turning cancerous and needed to have my bowel removed. So either way I would have been forced to stop working as I was told I needed 12 months off of work to recover, and then I was diagnosed with pancreatitis in 2013 which meant every other week I was in hospital for 7-10 days undergoing treatment for that, and then the desmoid tumours were diagnosed along with the thyroid cancer this year has meant that I haven't been able to return to the workforce as I am just not well enough to be considered reliable for work.
I can tell you the last 3 years have been hard financially, emotionally and physically and one thing I wished I had in place was life insurance to help me financially while I can't work, and money has been so tight and often stressful. I am just thankful my husband can work so hard to provide for us and support me while I am unable to work.
I really wished I had some sort of security in place, and it is something I hope through my mistake you will consider.
So I asked our friends over at Life Insurance Comparison to help explain how life insurance can be used while you're alive and become ill or disabled, and Sally has written a great guest post for us on this topic.
How Life Insurance Can Help If You Become Ill or Disabled
Wondering how you'll pay the bills if the main earner in the household gets ill, has an accident or dies can be a hugely stressful experience that can be avoided through life insurance. At Life Insurance Comparison, we're here to help you to navigate the often confusing world of life insurance so that you can get the right protection for your needs. We'll work with you to buy the right amount of cover and the most appropriate type of product to support your family if the worst happens.
When you first think about life insurance, what comes to mind? If your initial thought was to with death, you may be unaware of the full benefits of life insurance. Many people mistakenly believe that life insurance only comes into its own if the policyholder dies but it can actually be an invaluable form of financial support if you become seriously ill or disabled and cannot work as a result. None of us want to think about the idea that we might be unlucky enough to experience this but it pays to be prepared.
In this post, we look at the ways in which life insurance can offer peace of mind if illness or disability occurs during the lifetime of the policy.
Life Insurance and Illness
If you become ill and are unable to work because of this, the subsequent stress could make your situation worse. Even if your lack of income is only a short term proposition, you could be under severe pressure to make ends meet if you don’t have savings to fall back on to tide you over. Fortunately, life insurance can provide an income to ease financial stress.
The exact nature of this income depends on the type of life insurance product that you buy. Income Protection Insurance will provide regular monthly payments that can be anything up to 75 per cent of your usual salary, which can be used for day-to-day living expenses while you are not working due to illness or an accident, while Trauma Insurance offers a lump sum payment if you are diagnosed with one of the medical conditions that are covered by the policy.
You’ll therefore need to think carefully about the kind of life insurance protection that you would want to have in place if you were to become seriously ill or disabled. Would you prefer to have a regular income stream coming in each month that can be used regardless of the situation? Or would you rather receive a lump sum payment if you diagnosed with a serious and traumatic condition such as cancer, a heart attack or stroke?
Life Insurance and Disability
Life insurance can also help if you become disabled and cannot work. In particular, Total and Permanent Disability (TPD) cover provides a lump sum payment if you become permanently disabled and this stops you being able to work. This type of life insurance cover is usually needed if a professional has confirmed that you will never be able to work again due to a new (and not pre-existing) disability.
How Much Life Insurance to Buy?
Underinsurance is a huge problem in Australia in general, and this is definitely true for life insurance. This is because many of the Australians who do have life insurance don’t have enough cover to provide full peace of mind if the worst were to happen. You may already have some degree of life insurance through your superannuation fund but this is usually extremely basic and does not offer much protection at all. To be safe, you’ll need to have additional life insurance cover in place to fully meet your needs so that you are not caught out financially if you need to rely on the income.
With Income Protection Insurance, you’ll want to safeguard as much of your salary as you can afford (up to 75 per cent of it) so that you can still experience a good standard of living while you cannot work.
With Trauma or TPD cover, you’ll need to make sure that your lump sum payment is substantial enough to cover everything that you would want. You’ll therefore need to think about how much you would realistically need for regular outgoings and also factor in medical and rehabilitation expenses (if you don’t have health insurance that would cover some or all of these latter costs). Trauma insurance is generally the most expensive type of life insurance but it can turn out to be the most cost effective if you need to call on it.
Ideally, you should look to buy as much life insurance as you can realistically afford so that you are less likely to be underinsured. If you want the lump sum payment to be able to act as a long term source of income, this will obviously be more expensive to buy but would be very useful if you are unable work for over a year due to serious illness, an accident or temporary disability.
Thank you Sally and Life Insurance Comparison for explaining how beneficial it can be to have Life Insurance while you're alive! If you found this post helpful (or any on my blog) please feel free to leave a comment below.
Lately, I have been thinking so much about how differently life as an adult actually is when compared to what I thought it would be like as a teenager. Oh how naive was my younger self.
There are things I never thought were important or necessary until the time came and I realised it was too late.
Here are my 5 things I believe that every adult should have in place:
#1 Life Insurance Policy
Growing up, I always thought that a life insurance policy was something that was only necessary when you had died to help you pay for your debts or your funeral or to help your support your loved ones.
I didn't realise that having a life insurance policy can actually be of help if you get sick and need time off work, or if you suffer an illness or injury and become disabled or unable to work again, the life insurance policy can help you out.
What I wished was that someone had of said to me when I turned 18 to get insurance, as it wasn't until I got sick that I went to take out a policy and told that I am now 'unsurable'. There were so many times that I wished I had that extra financial assistance when I was too sick to work.
I did however make sure that once I was married that my husband has the necessary cover in the event that he becomes sick. We met with our financial planner at our bank and set up the policy to be paid out of his super fund. It is convenient for us paying it this way, as I am often in hospital sick it is one less bill to remember to pay. We were able to nominate the total insured amount we wanted as well.
#2 A will
I know a will isn't something that a young person often thinks about taking out, or a common misconception is that "I have nothing to leave in my will, so having one is pointless". A will is more than a document that states who will receive your car or the balance of your bank account, it is also a document that can leave instructions for your afterlife such as whether or not you consent to your body being used in organ donation, or where you wish to be buried or if you are to be cremated.
A will also has instructions over who is responsible for your digital assets such as a blog, facebook etc and what you're wanting done with these digital assets when you die. My husband understands my clear instructions of what I want to be done with my blog etc when I die, he knows that I want to keep my blog open as a resource for all the young people in the future who have FAP or will be needing a stoma and are looking for support when they feel alone.
My husband and I were struggling to find a time that suited both of us to visit a lawyer, so we were so happy when we came across Nest Legal an online legal firm, not only did it mean that we could organise our wills from the comfort of our own home, but also meant working around a schedule that suited us and not around when both my husband and I could make it. It was a very convenient solution, and so lovely to deal with.
#3 Enduring Power of Attorney
It is a false reality that only 'old people' need an enduring power of attorney in place. The sad reality is that we have no control over what misfortunes or illnesses may come in the future, and it is important that we have things in place to not only help yourself but to help those around you to understand your wishes.
An enduring power of attorney is a document that is as important as your will, and is a document that nominates someone to act on your behalf for financial, legal and health matters if you become incapacitated or unable to make decisions for yourself.
It is important that you discuss with your loved ones whom you wish to appoint and what roles you expect of them. It is important to choose someone there won't be conflicts of interest with or someone who can remain impartial to decisions and can act with your best interests in mind.
#4 A Regular GP
Up until 2011, I didn't have a regular GP. It was more of a 'what ever doctor can bulk bill and is available' sort of situations I was finding myself in. Tell you what, it was rather an inconvenience... You would see a doctor and tell them all the issues you've been having lately and your past medical history then he would come up with a diagnosis and then the next time I needed to see a doctor it was starting the process all over again. It wasn't just wasting my time, it was also wasting the doctors time.
As my medical history was becoming more and more indepth with each visit, I made the decision to 'shop around' for the right GP and I happened to have found him 4 years ago and never looked back. It is really helpful now having 1 GP who receives all the correspondence from doctors, scans and blood tests rather than having a few doctors and not remembering which GP you saw for what issue.
Trust me, having a regular GP will make life easier!
#5 Health insurance or Ambulance cover
I know I have mentioned before how beneficial it is to have health insurance (read my 12 reasons why here) but it is also important to at least have an ambulance cover in place. A trip to the hospital in an ambulance can very quickly become an expensive excursion, I have received bills for $800+ just to go to the other side of town! Luckily, I had cover in place.
You never know when you or your family might need an ambulance and there is nothing more stressful when you're dealing with an emergency than worrying about how you'll be paying for it, instead focusing your energy where it is needed.
If it is health Insurance cover you need, speak to the guys over at Health Insurance Comparison to find out what policies there are to match your needs or lifestyle.
I have no idea why I was in such a hurry to become an Adult, some days being a kid sounds so much easier.
So while these might be my list of 5 things I believe every adult should have in place, I know that you might have other suggestions. Feel free to leave your suggestions in the comments below, it might be of value to another reader who hadn't thought of it.
DISCLAIMER: While this post was written by myself about my experiences and the 5 things I believe every adult should have in place, all views expressed in this article are mine. This post was written for Health Insurance Comparison.
When I was 19 and was newly wed (literally a month before) I had my first consult with my colorectal specialist as I had just been diagnosed with Familial Adenomatous Polyposis (FAP for short). FAP is a rare inherited disorder which occurs because of a mutation of the APC gene. For those (like myself) that aren't experts on human anatomy and physiology, the APC gene (Adenomatous Polyposis Coli gene) which is known as a tumour suppression gene, is responsible for suppressing tumours in the colon and digestive tracts. So when you have a mutation of this gene, it in turn significantly increases your risk of not only colorectal cancers but other cancers too.
I only found out I had this disease as my dad had been diagnosed with terminal bowel cancer which was caused from the FAP.
So it was in this initial consult with my amazing colorectal surgeon that he asked me if I had Private Health Insurance, and when I replied that I didn't he said to me "First thing to do when you leave here is to get yourself covered. You're going to need it in the years ahead".
So I left his office and started researching different providers and the main thing I was looking for in my cover (at the time) was to be covered for colonoscopies and gastroscopies and also to find which one I had the shortest wait on to claim for a pre-existing condition, which was 12 months (some are 18-24 months).
I became overwhelmed with my research and really wished I had of gone through a company that specialises in health insurance comparisons, such as Health Insurance Comparison, as it would have made things so much easier. Instead, I went old school and called every provider that came highly recommended or I had heard good things about. I ended up going with NIB, as they were the best fit for me and my situation and have had my cover with them for 5 years now (but still good to compare what all the providers can offer you).
There are different levels of cover to suit each individual's health and situation which fall under Hospital and/or Extras. Hospital cover, refers to the cover needed for hospital admissions or proceedures (there are some exclusions which you will need to find out before getting a policy, for example I am not covered for pregnancy or IVF related, but covered for most proceedures). Extras cover, refers to things that aren't covered by Medicare and includes things like optical, dental, chiro, physio, psycology, weight loss programs and some non PBS medications (there are more inclusions depending on the level of cover you need).
One thing that I didn't realise before I was 19, was just how beneficial having health insurance could be. I always thought that if I had just a medicare card that it was enough and to be honest I thought it was an expense I didn't need.
"But once I got the Private Health Insurance cover and have had it now for 5 years, I have learnt just how wrong I was when I thought I didn't need it!"
Here are 12 ways that having Private Health Insurance (PHI) has benefited me over the last 5 years..
#1:I get to choose who my treating Doctor is....
When you are sick and have become familiar with a Doctor or Surgeon and have built up a relationship of trust with them, it is a no brainer that you would want them to do your operation/proceedure or to treat you. When you are admitted into a Public Hospital as a Private Patient, you can choose who your doctor will be for the duration of your care.
#2:By using my PHI in a Public Hospital, I am actually helping the hospital!
Each Public Hospital has medicare funding, and when a patient is admitted to the hospital as a medicare (public) patient all the costs associated with their stay e.g. blood tests, doctor consults, theatre fees, medications, accomodation etc is all charged to the medicare allocated funding of that hospital. So when I am admitted as a Private Patient in a Public hospital, the hospital is paid more and directly from the health fund, meaning that when I have scans or need to stay overnight the money goes directly to the hospital and can help them to provide more services to patients. I have had public hospitals send me a letter of thanks before to show their appreciation of me using my PHI in their hospital. If it means I can help others, I am all for it!
n.b: when you are admitted as a Private Patient in a Public hospital, usually you don't need to pay any out of pocket expenses such as your excess, but it is always important to double check with your hospital and policy provider.
#3:In a Public Hospital, you will get some great freebies if you use your PHI!
Have you ever had to stay in hospital for a number of days (or weeks) and have realised just how expensive it can be to hire out the tv? I think some hospitals charge between $6-$9 a day. So if you're in there for 5 days (for argument's sake) you could be looking at spending between $30-$45 JUST ON THE TV HIRE! I don't know about you, but I would much rather have the spare cash to get a drink or magazine from the gift shop. BUT if you use your PHI in a Public Hospital not only will you receive the TV hire for FREE, but you'll also get a FREE daily paper saving you up to $2 a day! C'mon who doesn't love a FREEBIE?
#4:You can sometimes get your own room.
In a Public Hospital the private/single rooms are pretty scarce and are given to patients on a clinical needs basis (whether public or private) but when there are patients who aren't requiring a single room, you can request to have your own private room (subject to availability) and is something you can discuss with the hospital. I don't always get my own single room, but sometimes I do for a couple of days, which is nice to just have some privacy and peace. This is different to the room settings of a Private Hospital, which most times I have stayed in the Private Hospital I have had my own private room with ensuite.
#5: When you need a surgery, you don't have to worry about long Public wait lists.
There have been times where for this reason, having PHI has saved my life. I am not saying that to be melo dramatic by any means, it is the truth. When I have gone to see my specialist and they have realised that I need to have a proceedure done quickly, they have booked me into the private hospitals on the next theatre lists. Examples of times have been: a) I was experiencing really bad pains in my abdomen and pelvic area for months and when I got in to see a specialist he had me booked into theatre the following week to investigate what was wrong. I had a hysteroscopy, laporoscopy & cystoscopy and was diagnosed with stage IV Endometriosis. I had a 15cm round mass removed off of my left ovary with the lining of said ovary removed, a couple of 7cm masses removed from my uterus and hundreds of 1 & 2cm sites removed from elsewhere in my pelvic and vaginal area. My surgeon said it was one of the most extensive and worst cases he has seen in his career and for someone who was only 21, and to help me recover put me in a medically induced menopause for 6 months. I would have been waiting A LONG TIME on the public system to be seen, and who know's how much worse I could have been! b) I was experiencing a lot of rectal bleeding and pain, and trying to eat food was not only an unpleasant and painful experience, but was resulting in really bad case of 'the runs' and there were times I felt I might not make it to a toilet. I saw my colorectal surgeon, who booked in for a colonoscopy that week at the Private Hospital and it was discovered that the polyps in my bowel had grown bigger and were starting to turn into cancer. So thankfully I had my bowel removed a couple of months later before it had time to fully turn into cancer and cause trouble. c) Recently, I was diagnosed with Papiliary Thyroid Cancer and saw a specialist down at Sydney who is going to remove my thyroid (in a couple of weeks) and thankfully I had PHI insurance as the earliest he could do it on the public lists at the public hospital was August and that is still 4 months away! Instead, I am going to a new cancer hospital in sydney and I had control over where I had my surgery, what specialists and when I had it.
#6:You can sometimes get your glasses for FREE*
If you need glasses and can't afford the $400+ (or if you are saving for that holiday but need glasses and its an expense you don't want to part with), check with your Private Health Insrance extras cover as you may be entitled to a FREE or discounted pair of glasses. I get my glasses from Specsavers and sometimes they have a 2 for $199 special offer and have partnerships with different health funds that you can be entitled for the glasses for FREE or discounted and sometimes with no gap to pay either! Seriously, if optical is something you need it is something worth looking into as it can save you money! IMPORTANT: Check with your PHI first on what entitlements or extras cover you have before you purchase your glasses. They can also advise you on how you can claim your glasses under your cover. *When I say FREE, some policies entitle you to claim all or most of your costs back to the PHI, check with your policy and provider.
#7:Speaking of extra's cover, how painful is a trip to the dentist on your wallet?
Just like optical extras cover, dental cover can help you save money too! It is important to speak with your insurance provider about what dental cover you are entitled to and how to claim before you get your tooth pulled so you know what to expect with any gap or out of pocket expenses.
#8:A ride in the Ambulance can become rather costly, but if you have PHI it can be FREE to you.
If you have PHI, your bill will be directly sent to your provider and depending on your policy and cover you might not have to pay anything additional. I remember once my sister had an epileptic seizure and my parents got sent a $900 bill. You never know when you might need it, but it is always best to make sure you have the cover there.
#9:Staying in a Private Hospital can be quite expensive if you aren't covered.
I was so shocked when I received a letter to show what was paid to the Private Hospital for a 3 week stay (was in excess of $21k) and thankfully was all covered by my policy. Except the excess of $250, which I have to pay twice a calendar year, my admissions don't cost me any extra and the level of comfort and care is really top notch. Don't get me started on the FOOD!! My first night I stayed there as a part of my 3 week stay (when I had my total colectomy), I had Roast Duck for dinner! Seriously something you would pay $40+ at a high end restaurant. Even the breakfast was gourmet! And I love having colonoscopies just so I can have their sandwiches (if only they sold them to the public I would eat there all the time), yes I have an obsession with their sandwiches, but when you have them you will understand just how good they are. Oh and did I mention FREE WIFI and FOXTEL in your rooms too, as well as private rooms with own little balcony (well the Private Hospitals I have been to have had WIFI and FOXTEL). It really is a great environment to recover in.
#10:Sometimes we need a little EXTRA help...
If you are needing additional services like psycology, braces (orthodontics) or speech therapy, these can sometimes be covered under your extra's package and can be claimable up to 75% back for some funds. These aren't the only extra's that you can be covered for there is a whole list of additional (and rather costly services) that you can claim back on. This is another way that you can save by having PHI. Always best to consult with your provider on your cover etc.
#11:You could be paying LESS in Taxes!
If you earn over a certain threshold and don't have PHI the Government may charge you more in taxes. There are also incentives given by the government to try and get more Australian's using PHI and offers rebates which are organised through your tax return. You will receive a financial statement at the end of the financial year ready to do your tax return.
#12:If you take your policy out before you turn 30, you'll avoid paying the LIFETIME LOADING FEE!
To try and incentivise more people taking out PHI earlier on in life (before you are 30), the Government has introduced a Lifetime Loading Fee which is a 2% additional fee applied for every year you are over 30 when you take out your cover. As explained on PrivateHealth.Gov, if you are 40 when you take out your PHI policy, you will pay 20% more than someone your age who took out their policy before they turned 30. The maximum loading is 70% and if you hold your policy for 10 continuous years it will be removed. The Lifetime loading fee will be calculated when you enquire about a policy, but best to do it before you turn 30 so you save in the long run! As I was 19 when I took out my cover, I don't need to worry. However my husband didn't take out a cover until after he was 31, so this applies to him.
My advice to you....
If you are chronically sick, or if you know in your future you will be needing operations, proceedures (like colonoscopies etc) or if you would benefit from claiming back on extra's such as optical, dental, chiro etc it would be best to look into how having PHI could actually be helping you in the long run. I know being sick is expensive, and there are some expenses we just can't avoid but I know I owe my life to having Private Health Insurance and I am so glad that I have it. I pay my premium fortnightly which is direct debited from my account (also get discounts applied for direct debit payments. But honestly, it is best to shop around and speak to the different providers about how they can help you and your health needs or speak to a comparison provider like Health Insurance Comparison who can help guide you to finding the right policy.
Thanks to Health Insurance Comparison, you could win a year's worth of PHI! Click the ad below to find out more!
I hope that this is a helpful guide into how beneficial having PHI is for me, and I hope this helps you to know a bit more about how it can help you too!
DISCLAIMER: While this post was written by myself about my experience in how beneficial PHI is to me and all views expressed in this article are mine, this post is not affiliated with specsavers or NIB but was written for Health Insurance Comparison.
I try and be as ostomistic as I can about the whole 'having an ileostomy' thing, and never try and say that I hate it (because truth be told it is SOOOOOOO much better then sitting on the toilet in agony for most of the day). But there is one thing I absoloutley HATE and feel embarrased over, is the stench that is left behind when I empty my bag.
So I must admit I have tried the whole taking a can of toilet spray with me in my handbag when I go to the shops, and boy has there been some awkward stares when you are at the checkout line rifling through your handbag to find your wallet when out falls a can of toilet spray or as my husband likes to refer to it as "the stink be gone can", and you have to try and justify THAT YOU ARE NOT STEALING TOILET SPRAY... let's just say shit gets really awkward.
So what if I told you that I have found the perfect addition to your stoma kit, that not only will it not cause awkward or embarrasing stares, but will at least help you retain some of that dignity (that is otherwise flushed away).
For Christmas, my husbands mum and sister had made up this cute little basket filled with all these delicious smelling products, and one of them was a Bora Bora Blossom Room Spray. So when my mother-in-law mentioned well gave examples of times where it has come in handy and after seconds of spraying the mist the house smells so much nicer and the smell has completely faded away...
So of course my darling husband pipes up and says "Oh that would be awesome so you no longer stink up the house" (gees thanks Russ I love you too) it actually gave me a great idea for its use.
So off I went to add this spray to my stoma kit, and it is amazing! I spray it just before I empty my bag when in a public toilet (or at someone else's house) and then again once I have finished to be safe. And I love it!
It is compact and not bulky, it is discreet in the sense that it looks kind of like a body mist or perfume, AND IT IS SILENT!! No more of this "shooooooosh" sounds from the toilet cublicles as I spray the smell away, and no more waiting until everyone leaves the toilet before I emerge to avoid those judgemental stares!
Are you looking at returning to studying on campus this year?
Do you have a stoma and worried about if this will affect your studies?
Well believe it or not that was some questions I had this time last year. I had just found out I had been accepted into a course I have been wanting to study for a few years and was worried how I could manage full time study as I now had a stoma.
So I thought I would share with you some tips/products I found that helped make my life easier when studying on campus, and a few of you have been emailing me this same question, so thought I best do a post for you all.
Sharing my 10 tips that made studying on campus with a stoma easier!
#1 Meet with the course coordinator or support officer BEFORE the study term kicks off
For those who know me, know that I am a very stoic person (some say stubborn) and I haven't quite grasped the concept that IT IS OKAY to ask for help.
I started studying last year and tried to get through the first few weeks before I realised that I needed help. I was finding that for 4 out of 5 days each week we would be in a classroom that was small and it was cramped, but I was in pain for 6 hours a day because of the desks. There were some desks that sat right at the height of my stoma and really pushed against my stoma all day and it was uncomfortable and painful, and don't get me started on the chairs. The chairs were cutting the circulation off in my legs/feet which since I first was diagnosed with pancreatitis I have had issues with my feet swelling, so this only added to the pain and discomfort felt each day in the classroom.
After a few weeks I worked up the courage to meet with the course coordinator to see if there was any chance that there could be accomodating desk and chair in the room that I can use. I had these arranged, but the people who were in my class became a bit judgemental about it all so I felt uncomfortable to return to class (so I instead changed to an online campus as it became too upsetting).
So I suggest before you start studying on campus, that you meet with someone and ask to check that the desk and chairs in the room are accomodating to you having a stoma and won't cause you any discomfort. It would have been much easier at the beginning of the course for me if this was in place to remove people asking questions later on.
#2 Find the right bag/backpack
One thing that is super important when studying on campus is making sure that you are supported in not only facilities at the campus but also in having the right and essential items to help you get through the day.
I am sure by now your doctors and stomal nurse has discussed the importance of hernia prevention and practising techniques that will help eliminate any chance you get a hernia, after all having a stoma will increase your risk of developing a hernia.
One way you can do this is by finding the right backpack that not only is comfortable to have on your back, but is also at the right height too. You want a bag that doesn't cause your back to hunch forward.
Some tips to remember when choosing a backpack: * Make sure the bag has 2 even straps, this helps to distribute the load evenly. Bags with 1 strap can cause damage to your neck, shoulders and back. * Choose a bag that fits you and is appropriate for your body size (weight and height), the bag should rest comfortably on your back * The bag should have adjustable straps and buckles to allow the bag to be lowered or heightened into the right position * The centre of mass should be at weight height not higher or lower * Opt for a bag that has a waist belt, so that your bag can be closer to your body when moving/walking to prevent injury or strain * Straps should be padded and wide to help distribute the weight, also easier on your shoulders and waist
#3 Don't have a heavy backpack
So we all know what happens when you are studying whether as an adult student or as a student in school, that you have so much to carry each day between books, lunch box/drink bottles. But if you carry to much in your backpack not only will you likely cause yourself back damage but also run the risk of herniating your stoma/abdomen (remember that after all you DO need to be wary).
Last year, I knew I didn't want to run the risk of a hernia or damaging my back while having my backpack full of text books and what not, so I invested in getting a zippered folder that had a binder inside to hold my books in place, and also had enough space for my text book too. I carried this around with me and it wasn't too heavy either and it meant there was less in my backpack. I got mine from PB TEEN in the US and had it shipped to Australia, as I had spent a good 2 weeks searching for one that I liked in stores and online in Australia and kept finding boring plain black leather ones.. don't get me wrong if you like that style then that is great, but I like things to be a bit of fun and eccentric like me. Postage was great and I had my new folder within a week or so.
If you don't fancy carrying a zippered folder (compendium) around, you can always look into a backpack on wheels so you can wheel it around... also helps remove the heavy backpack issue too!
#4 Packing your stoma supplies
There is one thing you should always do, and that is every time you leave the house make sure you pack your stoma kit. The last thing you want to do is be on campus stuck without your supplies in the even that you had a bag leak or accident. I got a nice toiletry bag made for me (but you can purchase these anywhere, even an insulated lunch box works perfect) and inside have enough supplies for a couple of bag changes. I also have some scented garbage bags (read my review/reccomendation here) and also a clean pair of undies in case the others are accidentally soiled.
#5 Invest in a diary
One thing I have learnt the last couple of years is that my memory IS NOT what is used to be. I have found it only got worse after the 6 month course of being in a medically induced menopause, and even noticed that with having a stoma I have troubles remembering things which could be linked to being anaemic or deficient in vitamins and minerals (as my body is not absorbing these as much anymore)... Although my husband is somewhat disappointed that I still recall enough to win a disagreement and to prove my point.
But I found by having a diary I could write down things I needed to do for each class and as homework, but also is useful to write in reminders for assignments too!
I got this really pretty and thorough diary from Typo and it is so elegant that the pages are lined with gold. Just a lil' bit fancy (really need to pronounce it like fun-cay, you know how some like to call target tarjay). I think this was around $30 or less.
#6Pack your lunch each day
I know how tempting it is to have that little bit extra sleep of the morning, and just how much of an inconvenience it is to pack your lunch when you can just buy it from the cafeteria/canteen on campus..
Well not only can studying be costly, but if you can help reduce costs each day, your wallet will be better off! And besides if you pack your own lunch not only do you know what is in your food, but you can save time standing in line trying to decide what you can eat or what won't disagree with your stoma.
Wanting some great and nutritious lunch box tips and ideas? Then read this article by Mum Central, which has 5 fresh ideas for your lunchbox.
#7 Keeping your lunch and snacks fresh
If you have read the above article and are planning on packing some fresh food, or foods like yoghurt you want to keep refridgerated and cold, you would be needing to ensure that your lunchbox stays cold enough.
We all know that foods that sit in lunch boxes can sometimes not look or be as fresh when it comes to lunch time if the lunch box is not kept cooled enough, which can also lead to causing upset stomachs (which we don't want).
So what if I told you that I came across this amazing product last year that was a refridgerated lunch bag that literally kept my food cold, fresh and appetising for up to 8 hours! Would you believe me? Well you better, because the Fridge-to-go lunch bags (as the name suggests) acts as a fridge on the go. It is pretty innovating how it works, by putting these panels (look like lunch box ice cubes) in the fridge over night, then putting in the lunch bag in the morning, and it keeps your food cold all day! Seriously was the best product I had last year to help me survive on campus study! They also have a FREE ebook on fresh lunch box ideas if you subscribe to their mailing list too!
Trust me when I say there is nothing worse than a yucky, hot, salad at lunch time.
#8 Keeping hydrated through the day
One thing that I know I need each day is a litre of electrolyte sports drink (like Maxx, gatorade, poweraide etc) to help replace the fluid and electrolytes lost throughout the day.
So for me there is nothing more refreshing than a nice, cold beverage on a hot day, so rather then having to freeze my drinks to ensure they stay cold all day (which sometimes when you NEED them they are still frozen) I purchased the wine cooler fridge-to-go bag, which fits my 1LTR electrolyte drink in perfectly! So not only is it good for keeping wine cool but also drink bottles too!
I remember waiting at the bus stop at 3.30PM after classes had finished for the day, and pulled out my drink bottle and it was still cold and felt refridgerated. It was so REFRESHING!
#9 Don't drive each day either take public transport or car pool
One thing that helped me to be more organised each day was taking the bus to uni/TAFE. Not only did it save on the stress of trying to find a car park than walking a mile to get onto the campus, but it also helped me to save money on petrol costs.
#10 Purchase a power bank for your phone
If like me you use your iPhone (or other phone) all the time, then you would know how frustrating it is when the battery runs low and you are waiting for an important phone call/email/text.
I went into my local electronics store and purchased a power bank charger for my phone, which has been an absolute lifesaver on a number of occasions! Simply charge it up the night before, then put it in your bag when you leave the next morning. When your phone starts running low on the battery grab the USB cable and plug one end into your phone and the other the charger, and watch in awe as this contraption with NO power source is charging your phone up!
I purchased mine (a pink one) from JB-HIFI for around $40 and I take it everywhere I go when I am out and about, and when my phone starts looking tired and sick I just plug it in and give it a fresh bout of life!
I really hope that these 10 tips that helped me to study on campus with a stoma help you too!
P.S if you have a question or issue you want help/advice on, please send through an email from my website or a message via my facebook page. If my blog has helped you in any way please let me know!
Just like Santa, we need to make a list and check it twice!
I know for me personally, I tend to only get bag leaks when I am away from home and become stressed. This is my first Xmas with a stoma that I will be going away, and as I won't be just able to zip back home to grab a supply if I do get a bag leak I need to make sure I am prepared first!
This year would certainly be the first year I won't be running off to the shops on Christmas Eve and trying to find the right gifts for my very long list of people to buy for! Not only is it exhausting running around when you are sick, it can become quite stressful when there are people everywhere (if like me you have social anxiety) and guaranteed you won't be able to find everything last minute.
I decided I would try something different this year and actually started buying presents back in May, and I haven't even finished wrapping presents and my tree already looks full!
This is my not yet full tree!
So I have had a lot of people ask me how am I so organised this year, and I thought I would share my 5 top tips with you!
1. Write a list!
I have so many people to buy for at Christmas that it does become rather expensive (doesn't help being the oldest of 9 siblings aged 7-21). But it is best to grab a pen and paper (or you can type if you prefer) a list of everyone you need to buy for along with the gift ideas for them. I find it easier to do this as a table.
I have created a FREE download printable for you to print off and fill in if you like! Print off as many sheets as you need!
2. Shop when there are sales on
This one is a given! Take advantage of the mid year sales, usually stocktake sales from around May-July. These often fall in with the EOFY sales too! I discovered this great website (and an app) called OzSale and they have some pretty amazing stuff usually very well discounted! I will admit that 80% of my shopping this year was done through this site and I know I saved a lot!
Also there are some other HUGE shopping events each year like Click Frenzy (which only lasts for 48 hours), Black Friday and Cyber Monday (although being USA shopping events a lot of stores in Australia are now having these sales too!).
3. Wrap as you buy!
Hands up who has spent Christmas Eve sitting there rather uncomofrtably for many hours wrapping all of the year's presents rather then spending and enjoying this time with your family?
I know I have done this, and even remember as a kid that dad would have to take us out of the house for most of the afternoon/evening and keep us entertained so that we wouldn't annoy mum who was locked in her room wrapping presents for all the kids.
So I have found this year if I take a little time out of each day whether it is just 5 or 10 minutes and just wrap as much as I can. I pretty much have everything wrapped for now.
I have also found wrapping as I purchase to be rather helpful too at making better use of my time come Christmas Eve!
But there is also the added convenience come December 1 that charities set up a stall in the shopping centres and you donate money and they will wrap your presents for you! Not only will you be saving time yourself but also giving a helping hand to charities, and to me Christmas is about the giving and not so much receiving!
HOT TIP: If a store offers complimentary gift wrap, take them up on the offer! It is one less thing you need to wrap!
4. Take advantage of boxing day sales!
Each boxing day I will grab what ever christmas wrapping paper and labels are left and stock up. I keep these stored in the cupboard all year and then when it came time to start wrapping, I didn't need to buy 1 single role this year! You have seen my tree above, so you can imagine how much paper I had needed!
Boxing day sales is also another great opportunity to find bargains and put them away.
For the last 5 years my husband has asked me for a train set to go around the Christmas tree (if you're thinking he sounds like a kid, he is at heart lol). Well we have been eyeing off this amazing set that is normally around $300... well last year on oo.com.au I scored this exact same train set for $49!!
We got to put it up this year and as you can see from the picture above, it is a big set and I had one happy husband! He wanted to put the tree in one corner and fill the space with presents to resemble mountains and landscape for the train to go around... see told you he was a big kid at heart!
5. Shop online or take advantage of home delivery
One thing about Decemeber is the shops start going crazy! There are people everywhere, and parents that are stressed and kids throwing tantrums. It is just a crazy time to shop!
I decided to avoid all that this year and have had almost everything purchased online and delivered!
Also given my health too I thought it was easier and less stressful to have everything delivered online. As I type this I don't even know if there is anything I need to go to the shops for except for food, but even with that you can get it all home delivered!
Bonus Tip: LAYBY, LAYBY, LAYBY
If you find layby works best for you and if a store offers layby, take them up on their offer! Work out what the required payments would be each week/fortnight and pay it off.
If you haven't looked into castle or chrisco before either, be sure to look into these as they allow you to order hampers and food through the year and it all gets delivered just before Christmas. It is like a huge Christmas food layby! It is pretty handy and I know many families who do this each year (some have the food last months and just store in the cupboard or freezer). The hampers aren't just food they also have electronics and all sorts of things!
These are my quick 5 tips to having a better organised Christmas this year, and hope these help you too!
If you have a tip for a better organised Christmas, feel free to comment below!
[Disclaimer: the stores or websites I mention above I have done so out of honestly using these sites and being very happy! I was not offered any payment or form of reimbursement for mentioning these sites. The only affliliate link is the Ozsale where as a member and refer people to sign up I receive a benefit such as $5 towards my next purchase.]
Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.