Tuesday, November 2, 2010

The Long List



I see my rheumy tomorrow and I have so many questions that I need answered. My GP and I have worked on a list of questions for me to try and get some answers and even possible solutions to. My rheumatologist tends to have a habit of going off on a tangent when you ask a question, making me feel like I should never have asked it in the first place... the unnecessary ramble can be so boring! Sometimes I feel like I'm sitting in a draining university lecture! That said, she is a great rheumatologist... I just don't seem to be getting anywhere though. After three years you would think that I have at least some answers and would know how to and what to do to manage my condition- but I don't. I've been given a whole heap of drugs all of which have just caused me more fatigue and I just feel like I'm going around in circles. I thought I was finally getting somewhere with the diagnosis of rheumatoid arthritis and remission of fibromyalgia but oh no I still have fibromyalgia. I've spent the last two months trying to get my head around it. I was expecting to get stronger drugs for arthritis and expecting to improve enough that I could return to part time study or work, but now I'm not sure what to expect with the knowledge that my fibromyalgia never left and knowing that at this stage I don't qualify for stronger drugs because the rheumatoid arthritis is only mild and fibromyalgia is the real beast that is crippling my life. I thought fibromyalgia was behind me and I was ready to move on with my life and I still am... I want to do so many things but the pain and fatigue of fibromyalgia is a monster to work with.

Both centrelink and my GP made a decision to switch my sickness allowance to permanent disability (I'll discuss this more later) after realising that this might be as good as I'm going to get. So this is what I really want to know- is this really how good my life is going to get? It's really hard not knowing and I want to know the truth... it's been four years already come on I think it's time to start facing reality. This may be how good it gets but maybe it will get better, I'm choosing to believe that it will but for now I need to be facing reality and I need to know what I am dealing with, I need to know what I should expect for my life and what are realistic expectations. So I am armed with a long list of questions for my rheumy tomorrow. Some of which are my GP's (because she really doesn't know what to do with me anymore!) and some my own but when it came to write them down on paper I got stuck. I have so many questions that I just don't know what to ask anymore, so I thought a blog post might help, so here is the list so far.......




1. Why was I told that my fibromyalgia was in remission when it isn't?
2. Why wasn't I put back on fibromyalgia medication when my pain flared up?
3. Seeing as my fibromyalgia pain is a little bit more manageable now, doesn't that mean that the arthritis medications will work now? Can I try them again?
4. Why would stronger drugs be discussed if I don't even qualify?
5. When/will I qualify for stronger drugs
6. Should I be seeing a psychologist for cognitive therapy, will it even help/ how would it help?
7. What exercise should I be doing that won't cause my fatigue to flare?
8. Should I be seeing someone trained in fibromyalgia and exercise for a tailored exercise plan?
9. Why is my fatigue so bad?
10. Should I be seeing a chronic fatigue specialist?
11. Both centrelink and my GP have put me on disability after deciding that it is highly unlikely that I will be able to return to work in the next two years. What do you think about that? Will I be unable to work for the next two years? Am I really disabled?
12. Will my arthritis get worse?
13. Am I going to improve or is this as good as it gets?
14. What are reasonable expectations/goals that I should have in my life seeing as though I've been unable to study or work?
15. Should I go to a support group?


I have more but I can't think right now so I suppose that will do for now, I think I have a pretty good starting list. Yay for blogging! I got a few more down that I didn't have- mission complete! I just hope I get some answers. If I don't get clear answers, my GP promised me that we WILL figure it out on our own. I WILL BEAT fibromyalgia, just you watch me.





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2 comments:

Anonymous said...

you know whats envious and bizarre about this? THEY decided you needed to go on full disaBILITY when you can still walk ten mins a day sometimes. In the lovely uk they try and bat you away from benefits with a club, you cry at the doctors because you cant flush the loo /make meals/wash or even open heavy doors and need a wheelchair and time and time again they just put on a sympathy face when you say how can i live? and let you go without a sniff of a referral or to get a social worker to assess your needs-here you have to lawsuit just to get an assessment thats if you know about it, it toook me over 20 doctors and actually internet to find out it even existed after having to be looked after by a stranger for four years!!dont get me started on their reply to personal independance allowance.its disgusting.as for getting any kind of disability if you can walk more than 50yards its out..or even push yourself in wheelchair 10 metres on flat ground-think im kidding?im envious of oz.

Anonymous said...

back to your issue, im sure you will be capable one day but this probably needs to b done so you can just recouperate in peace-go with it and let your body rest. one day you will be back xxxx try not to let your pride and lack of listening to your body affect your body for years to come. You WIll achieve things. your determined. just relax and accept your current disability payment..

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