I'm new here. I was diagnosed with RA earlier in the year after
spending 2 years on Prednisone for the misdiagnosis of PMR (polymalgia
rheumatica). I have involvement in my feet, hands, ankles, wrists
and I believe my hips and knees.
I have recently started on MTX and leukovorin along with some pain
medications (THANKFULLY!!). So far the results are mixed.
My question is this. I was very involved in astronomy until all
this hit. It requires me to lift about 200 lbs of equipment (not
all at once) into my car and out of my car and then back into my
car. I haven't been able to do it now for 2 years.
Should I realisitically expect to ever get back to astronomy? My
telescope alone weighs 28 pounds with handles on the side for lifting,
the tripod weighs about 20 pounds. Just loading the car up would
exhaust me as fatigue is a MAJOR problem for me and I have to be
careful what I do every day and take it in small bites.
Those of you who have had this problem longer than I can maybe help me
with this. The equipment is quite expensive and I also think it a
sin to let it sit and gather dust. I thought about giving myself
until spring of next year before deciding.
Thanks for any help.
good question..personally after I unload my grocery cart onto the belt at the checkout, I am shaking, sweating, and exhausted, and I need an escort to my car...200 pounds of equipment??
I would talk to your RD about getting on a biologic. stop damage before it starts, maybe you will regain some strength.. is having an assistant possible? This doesn't sound like a passing hobby.
Thanks for the suggestion. No, it hasn't been a passing hobby. I've been at it for over 10 years now. But having an 'assistant' is not something that I can see happening.I think it's too soon to give up on something you love. Talk to your rheumy specifically about the fatigue. There are meds to help you with that. My RA has not given me much fatigue, thankfully, so I'm not up on the particular meds. But I know they're out there.
More important now--your screen name. Tell me the VT refers to Virginia Tech!
I have an intensive hobby also. I show dogs. You learn to have a dolly to carry stuff... make small loads...and deal with the pain. Plan on a lot of recovery time after.
Deborah
I think that the first thing to be done is to find the right mix of meds that remove most of the pain of the RA. If you don't get relief from mtx pretty soon, I would start talking about using the biologics. This can take several months to a year (at least in my case) to get the meds right. Fatigue was a large part of my disease until the meds started working. I feel as capable of doing just about anything that I did prior to the untreated depths of my RA. Long story short, DON'T GIVE UP, is way too soon to dwell on the worst that can happen.
Mike
You asked for realistic expectations so I won't sit here and tell you this is something you will definately be able to do long term. If you are talking about every day; twice a day....or even 5 days a week twice a day I'd advise you to REALISTICLLY rethinking your plans. I'm not saying give up your dreams....but you might have to be creative about how you do it. Maybe think of a different way of hauling your supplies. Maybe think of a different way of unloading and reloading them into the car. Maybe a van would be easier to load and unload. Maybe there's a different aspect of the job that you could persue.
The right mix of meds is definately good advise; but even on the best meds this is a progressive disease. You'll not going to get stronger over time....and things are not suddenly going to get easier either. If you've spent the last two years on Predisone and you're having trouble loading and unloading the car I'd be concerned if this was something I could continue doing.
I don't mean to be the negative voice here; and I could very well be wrong, but I've lived with RA for close to 12 years now. I take MTX & Humira and I'm doing very well....but can I do all the things I did before RA? No. And over time I have noticed that this only gets worse.
I don't mean to paint RA as a horrible, crippled type of life. I have a very full, active and extememly happy life...but I've learned to adjust accordingly. I've learned the things I shouldn't do to insure that tomorrow I'll be able to get myself out of bed and dressed for work.
Keep in mind this only my opinion...You may be one of the lucky ones that will not have to alter their life due to this illness. I certainly hope that you are.
Best of luck to you.
Lovie
If there is something I really want to do, I figure out how to do it. Work smarter not harder! Use tools to load, unload, and haul your stuff.
I can't lift stuff over the 'lip' of my trunk.I had a triangle slide constructed out of plywood and covered the slide part of it with slippery (I waxed it) stick down tile. Now I can easily drag bagged stuff up my ramp and out of trunk to a fat tired kids wagon. (Saves back and forth trips too).
Hope you find a way. If nothing else find a strong bodied like minded friend to help.
That you all for the marvelous responses here!! I am impressed by all of you and your thoughtful replies. Oh BTW VT stands for Vermont, where I live.Alot will depend on you and your personal strength and determination. Good Luck.
I totally agree with Lovie, and if there's a will, there's a way!