Tuesday, December 6, 2016

I Was Hoping For Better

This is a post that I have been putting off for quite a while.
RA has not been kind to me this year, actually starting late last year. I switched meds hoping for a miracle drug to come help me ... that didn't happen. I have adjusted my eating, I still walk everyday and do some light weights when possible. I have cut way back on soft drinks (my single vice that I still have) and drink mostly water and vegetable juice now. All for nothing, I continue to struggle and haven't rode over 1000 miles all year long. Truthfully, probably closer to about 600 miles. I sold one bike in September and I now have my only bike left for sale.
I felt this day was coming so I plunged myself back into photography early this spring to have something to occupy my mind and time. Riding has been a huge part of my life since I was 10. While photography has worked to some degree, it sure doesn't take the place of getting away from everything on a bike for 5 or 6 hours. Strangely I am semi-okay with selling my bike and moving on.
Now for the next stage ... I am struggling to survive at work as well. So much so that I am starting to look in to disability. I have a rheumatologist appointment next week and will talk further with my doc about it and the possibility of another med doing more for me. I will also have a guest post by Deanna Power, she works with Disability Benefits Help and can offer some insight into how to apply for disability.
I am in the early stages of starting a photography blog or maybe converting this blog to photography, not sure yet ... still kicking it around for now. I truly hope that all of you are doing good in the fight against RA. It's not easy, it's not fun but we must continue on!  


Anonymous said...

Yeah you hit the real nerve that you don't see on TV when watching an ad for xeljanz.
We should slowly get better, but remissions and or relief are often hard to come by as we slowly lose little parts of our functionality.
If photography works for you, go for it.
We will look forward to anything that you care to publish.
I am hoping that I can get enough time in to retire before choosing disability, but who knows.
Hang in there.
Happy thoughts from here :).
Phil - Syr

Rick Phillips said...

I was forced to disability 8 years ago. I was not happy about it and resisted despite the best advice to do so. I am now happy it is over, but it is difficult to get ti done. My advice is that going thru the process is easier with a professional on your side. It is a long process and I wish you the very best.

It is important (in my judgment), to find what works for you and pursue it even if you are working on a disability case.

best wishes

Terry said...

Phil, you are so right about not showing the full realm of the disease. I can't complain too much, I rode every chance I got for some 13 years after being diagnosed. It sucks being forced to walk away from it rather than it being my choice though. With my more limited movement now, I think photography can work for me ... the main thing is having something to do. Especially if I ever do get disability. I will post some photos soon, I have shot a bunch over the summer. You take care of yourself and ride some for me this coming spring and summer!

Terry said...

Hello Rick, sorry to read that you were forced into disability. I understand the resisting part, I have been for a while now but starting slowly to accept the reality of the situation that I find myself in. I'm not getting any better. I have talked with some that have applied and you are correct, they don't make it easy for you. Thank you sir for your insight on the matter and my best wishes for you.

Unknown said...

Hang in there ! Have lived with RA as an athlete since 1983. check out my new blog site. Shining light to you and all of our RA family.



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