In fact, this will be a short(ish) post because I'm in France at the moment visiting my family and the set up isn't great.
The main thing I wanted to share is that I had an appointment with my endocrinologist last Thursday and she gave me some great news. She said that after having reviewed all my blood and urine tests it appears that: "From a medical point of view you no longer have Cushing's".
What a relief!!! I knew that the surgery was successful or at least well done because I didn't appear to be having any after effects but I was in doubt about whether my Cushing's had been cured. After all, the success rate is only 70% and even that statistic is sketchy! No one knows if they mean success of a full cure or just an uneventful procedure. Anyway, the reasons I was doubting whether I still had Cushing's were explored in a previous post I think and anyway, that is moot now. The main thing is that my cortisol levels are good and I can start lowering my replacement doses now. This is a good thing because unfortunately staying on the replacement hydro isn't helping with my weightloss.
Now before I start jumping for joy and everyone assumes I'm in perfect health now, I must remind you that "curing" Cushing's only means that they have managed to remove the tumour which was making my pituitary gland over produce cortisol. All of the damage that was done from years of this excess of hormone cannot be repaired overnight (or even in a matter of 8 months for that matter!) It will probably take another year or 2 before things are really "back to normal" and even then, there's no guarantee! Like any tumour, there is a chance of recurrence but obviously I'd rather not think about that at the moment.
No, I'm focussing on the positive and looking to the future to see how I can start getting my life back on track. My main health concerns now are my back which has Osteopenia (one step away from osteoporosis), my skin as I have a condition who's name I can't remember and my stomach because it seems to be producing excess acid which is why I felt hungry all the time. At the moment I'm taking some tablets for it but I can't keep taking them forever and I need to identify why my stomach is making all this acid. I may have an ulcer or something serious like that.
But the bottom line is this: most, if not all of my problems will be alleviated once I lose weight.
It's such a vicious cycle really because it's also all my excess weight which is preventing me from having a more active lifestyle but I guess nothing will change the fact that I just have to get on with an actual Diet!
God I hate that word, DIET!!
Not because I can't do them, everyone who knows me knows that I've done many in my life and most quite successfully (except of course when Cushing's was against me) but it's just that I feel like I've been dieting my entire life. I'm sure most woman can relate to that but I think I just hate the entire mentality of it!
But what I have to remember is that this isn't about vanity! It's not about wanting to be slim so that I can be more attractive (although I wouldn't say no to that!). No, it's about wanting to be fit and healthy like I once was and more importantly to give myself and my body a fighting chance.
Yes, it sucks that I was dealt this shit hand and suffer(ed) for the last 10 years from a terrible rare disease, but the truth is that I'm still alive and nothing is stopping me from making sure that I don't lose/waste the next 10 years of my life!
My journey to recovery begins will self-acceptance, self-love and most of all: Patience!
I'm eating right and exercising and am not attempting to lose all the weight I need to in 6 months. It will take much longer than that because I'm doing it slowly and at a pace that suits me and my lifestyle. No one has a right to tell me what I should do and I've decided that I'm going to stop feeling guilty about not being in a hurry to be perfect. This might sound like something strange to say but I think that when you've been suffering and ill, people around you want to push you to get better. They want to seem supportive and encouraging but sometimes, for the person concerned it can also feel like pressure. Sometimes when I talk with family and friends, I can tell that they want me to say that everything is OK now and that my life is great bla bla bla... And it's not that I don't want to tell them that, but I also don't want to lie. That isn't to say that my life is shit and I'm unhappy, but it just means that I'm not quite there yet, and there's nothing wrong with that!
Personally, I think we are all in a constant state of self-improvement. For people who suffer from an illness, recovery or acceptance can be a long process. And for those fortunate enough to not be burdened by such things, you will often find that they still feel like they need to improve one part or another of their life. No one is perfect! I know that I have a long way to go but I think I'm doing pretty damn well so far...
On Friday the 20th of May, not only was I celebrating 8 months of post-surgery, I was also celebrating 8 months of having quit smoking and drinking alcohol and caffeine.
We are quick to be critical of ourselves but often forget the amazing things we do.
So here are all my achievements in the last year alone:
- Completed University despite my worsening health condition which involved writing several essays, sitting exams AND writing a 12 000 word dissertation on Huntington's Disease
- Was awarded a 2:1 Bsc (Hons) in Psychology and Social Anthropology
- Secured a place on the Master of Behavioural Health course at Hong Kong University
- Conducted research and wrote a 14 000 word report on families with children affected by undiagnosed conditions which enabled my employers (charity) to secure funding for a project which will help these families
- Took part in the Adidas women's 5K fun run, raised nearly £2000 for The Pituitary Foundation and hopefully raised awareness about Cushing's to a few people
- Underwent transphenoidal surgery to remove the tumour on my pituitary gland
- Finally kicked all my bad habits, smoking being the worst of them!
- Lost 10kgs
- Returned to work on a part-time basis and contributed to a Europe-wide project on clinical trials. Produced two guides on how to promote partnership between patient organisations and other stakeholders involved in clinical trials and also reorganised the project website.
- With the help of my parents, packed up 11 years worth of stuff for my impending move back to Hong Kong
- Alone, sorted everything out, closing, cancelling and suspending all my various accounts, memberships, bills, tax affairs etc... Sold my car, got a new boiler installed, instructed Estate Agents to market my flat for rental etc...
I think that by looking at this list, I've had a pretty productive year after all!!
Like I said, we are all very critical of ourselves and always think we should be doing more. Sure I could have done more but I could also have done less! Why focus on what I haven't been able to do rather than what I have done? If we were all perfect and able to do anything we wanted in no time, what would we have to aspire to?
Having only lost 10kgs since my surgery means that I still have a long way to go, but all that means is that I have something new to focus on. I still have room for improvement and I choose to see that as a good thing.
A person who no longer wants, no longer lives....
When there is a will there is a way. Keep up with this very positive attitude.
ReplyDeleteWe are fully with you.
Love
PY