Friday, February 28 2014
"Don't be shy about asking for help.
I was raised and taught to be self reliant and to never ask for help. So it has been something that I thought would make me appear weak and pathetic that I was better than someone who asks for help.
I realised yesterday that I have been wrong for many years.
Even when I went through my brain surgery, my endometriosis surgery, the menopause then my bowel removal surgery I never asked for help. Call it stoicism or stubborness but I call it being weak.
There were times where I needed help but just never felt right asking for help.
I say it was being weak because it takes someone strong to admit defeat and ask for help.
But yesterday I did ask for help and it felt great!
I had been studying for the last month to be a social worker doing a Certificate IV at TAFE and have been too embarrased to talk to someone or ask for help, and was ready to drop out.
I wasn't asking help academically as I am smart and capable of studying, it was just being less than a year after my surgery I thought I was ready and realised I wasn't mentally, physically and spiritually ready.
There was a whole week I had to have off because of the Endometriosis, then there was a couple of days I was in hospital because of my pancreatitis and my pancreas flaring up.
I decided that before dropping out I would meet with the course co-ordinator to discuss my options whether there was a part time option I could do a couple of days a week rather than fulltime or if there was an at home option I could do.
Well yesterday I met with the co-ordinator and told her about my health issues and that I didn't feel okay to do fulltime.
I spoke to her about how I had time off because of my endometriosis, and some days because of my pancreas. I also told her about my social anxiety, depression and that I didn't feel comfortable being in the class with 40 students as I felt so judged.
I told her about how the desks in some of the rooms are at the height of my stoma and for 9 hours it cuts in and is rather painful and also how the chairs in some classrooms cut the circulation to my legs.
She told me that I should be in the Diploma class and will work towards getting me in the class which has only 6 students in it. She also said I could do two days a week and would take 18 months (and can pick the workload up as I feel better). Apparantly I could get RPL for some subjects as I had completed similar Nursing subjects.
But what was one of the things she talked about that I wasn't aware existed was disability support services. She said she would like to see them involved which under their funding would mean having a one on one tutor for the work that I miss when I am sick, especially when my endometriosis takes a week of being house bound. Also through the disability support services that I would be entitled to having furniture in the room that is accomodating for my physical health conditions such as a desk that is the right height or a better chair.
Before I left she said to me that she could tell it took a lot of strength to ask for help and that by asking for help and arranging the meeting it showed that I was in fact strong and that there is support there for me.
I left feeling confident and didn't feel weak at all for asking for help.
I realised if you don't ask for help you don't know how much better things could have been.
If I didn't take the courage and ask for help I would have dropped out or went to class being in pain because of the desks and chairs.
So it is okay to ask for help and get the support you need!
Tuesday, February 25 2014
"Tears are the words the heart can't express"
I wish that there was an end to Endometriosis.
It's hard to write this blog post all optimistic and happy when inside it just hurts.
Tonight a friend called to share the news that she is pregnant and expecting a child in 30 weeks. It is so hard to be happy for her when my heart just aches.
I honestly thought that over the years everytime a friend announced they were pregnant the pain inside would get easier and not ache so much.
I tell myself most days that I have accepted never having a child of my own and I try to convince myself that I have come to terms with it but with reality I don't think I will come to terms with it, or at least not in the forseeable future.
1 in 10 women have endometriosis. I am one of those women.
"It's hard to wait around for something that might never be,
I have dreamed my whole life of being a mother, of showing my child what growing up being loved feels like.
I was first told when I was a teenager that there was a possibility I had Endometriosis but I was told that I was too young and teenagers don't get endometriosis.
For as long as I remember since having my first period when I was 9, that really painful periods were normal as that was all I knew.
It was frustrating when my friends started having their periods and they had 'normal' painless periods and would often acuse me of lying about just how bad mine were.
Mine have always been heavy and painful and required me taking a lot of time off from school or work when they arrived each month as I would be in bed on painkillers.
When I was 11 I started experiencing vomitting and diorreah every time my periods arrived.
When I was 14 I started losing blood from my bowels with each period, and when I was 21 it got that bad that I was losing more blood through my bowels then the 'normal' way.
But the doctors I had kept telling me that it was 'normal' and not to worry.
I wish I had of found the right doctors from early on as when I found my doctor in 2012 at the age of 21 he found via a laporoscopy, cystoscopy and hysteroscopy that I had stage IV endometriosis.
My doctor told me it was one of the most severe cases he had seen in his career and that the damage was so extensive that he had to place me in a medically induced menopause.
I learnt that I had a 15cm endometrioma on my right ovary (which he removed that and the lining of my ovary), a 7cm mass in my pelvic area and another 7cm mass in my uterus. He also told me there were hundreds of 1 and 2cm masses which were removed from all over.
He told me that I wouldn't be able to have a child naturally and because of the extent of the damage to my uterus the likely hood that an egg would attach and hold would be unlikely.
Having gone through a medically induced menopause I have a lot of sympathy for those older women who I have always heard talk about how bad it was. It really made me realise they weren't just old women complaining that menopause is really horrible- because trust me it really is!
My heart aches for my husband who has when we met he was ready to settle down and start a family. He is 11 years older and at the time of meeting was 29. He told me how much he wants to be a dad and being the last male in his blood line and heritage he really would like to pass on his family name as a legacy. I know it sounds very old school but he is good like that.
So for 5 years I have watched him get all clucky over friends babies and hear him say he would like a child, and it makes my heart ache even more as I feel pathetic that I can't give him what naturally a woman should be able to do.
It doesn't help that there aren't many people around us that are understanding or supportive and keep saying things like "it will happen in due course" or "when you stop trying it will happen".
I know it hurts my husband as he tells me it does.
I know there are other options like adopting or fostering which are plans we will take, but it doesn't make it hurt any less that I can't have a child.
IVF isn't really a viable option as we can't afford the gamble and would only work for us if there was a surrogate which I don't feel comfortable accepting. I just feel like I wouldn't be able to repay them this huge favour.
And then there is the whole heridetary condition I have, and I know its only a 50% chance of passing it on, but thats too big of a risk for me. I know how much the FAP has affected my life and I would feel too much guilt if I was the reason my child suffered.
This month is endometriosis awareness month and I will be doing a range of activities to raise awareness. For more information or to get involved check out Endometriosis Australia.
Sunday, February 23 2014
Charles Darwin stated that:
"It is not the strongest of the species that survives,
When I was told I would be joining the 'ostomate club' as a permanent member I knew there would be changes and things to get used to, but I never really understood or realised just how much my life would change.
I knew that my toilet habits, confidence, clothing, food and lifestyle would need changing and adapting, and I think I have done pretty well at learning things on my own.
I knew there would be a massive change to get used to in the sense that I couldn't just go to the toilet like a normal person and I knew that the whole changing of the bags would be confrontational and overwhelming, but I guess its just something you never would expect to have to do. I mean after all for 22 years I had just done things differently.
I also knew my confidence would take a hit, and it certainly has! People criticise me and tell me I am being silly, but how would they feel if no matter where they were and what they wore they constantly had this bulge on the right side of their stomach that only became more prominent as it filled up. If it were in the centre of my abdomen it wouldn't be so bad but sometimes it looks like it is a massive ball on the right of my stomach and people do stare.
There are days where I wish that I could just be 'normal', whatever that means as some days are harder than others. It is hard to consciously think about what I can and can't eat, knowing the days and scheduling when bag changes need to be made, setting alarms or reminders to empty my bag, remembering to drink specific electrolyte drinks and also to remember to take supplies everywhere I go.
I use to love being able to have pineapple especially on a pizza. I didn't have pizza all the time but the odd ocassion we would. A few months after my surgery I ordered a hawaiian pizza not consciously thinking about the fact it had pineapple or the consequence. Lets just say that pineapple doesn't break down before reaching the large bowel and when you don't have a large bowel it comes out whole (regardless of how much you chew it. It isn't very pleasant either passing whole chunks of pineapple.
Other foods that don't break down are peas, corn, celery, mushrooms, coconut, nuts and most raw foods. So to avoid blockages and uncomfort I know now to eat food that is well cooked and able to dissolve and be chewed.
I have had to buy a completely new wardrobe of outfits, which have all had to be not just what feels comfortable but also has to be clothing that doesn't make my ileostomy obvious. I have recently purchased a heap of new clothes from City Chic which are bubble hem tops and peplum tops as they really hide having an ileostomy and are so comfy too!
I also can't wear button or zippered jeans as where my ileostomy sits its right on my waist line and it cuts off my bag (its really unpleasant having things constrict your bag). I have found the most perfect pair of jeggings (leggings that look like jeans) and are elasticised waisted and are super comfy! I have around 4 pairs only because they are the only thing really I can wear!
You might think it sounds weird or silly that I need to write down so much or set reminders to do things like remember to change my bag or when to empt my bag, and its because I have such a bad memory and get so busy I lose track of days (seriously some days I don't know what I would do if my head wasn't screwed on).
So it is all a learning and adaptive process, but 10 months in I am getting there.