View Full Version : Rare disease #3
I had appointments with my rheumy and endo last week.
My rheumy told me I had psoratic arthritis, so that would be rare disease #3 that I'm dealing with in addition to GPA (#1) and GRH (#2). He also put me back on mtx, but at a tolerable dose of just 10mg/week, so that should be easy to deal with.
My endo put me on human growth hormone, but it will be several weeks to see if it helps me much. I'm on 14 daily oral drugs now and 2 injections. Life through chemicals.
All-in-all, I'm not doing to bad. I move pretty slowly and every movement hurts, but I'm still getting around. Some days are better than others, but that's to be expected.
Lightwarrior
05-22-2012, 03:19 AM
Oh VDub,... I hate to hear that you are moving slowly and every movement hurts. I am sending you all the light and energy I can, I hope you get it and I hope it helps. :hug3:
Oh, thank you! No worries, tho. I'm still doing everything I want, it just takes a lot longer.
I'm in the process of washing and waxing my RV. It took about a week to wash it. I now have the back waxed and part of one side is waxed. I do about a 10'x10' patch about every day. It will take another week to finish it. The frustrating part is that 4 years ago the whole thing would have been done in one day.
Oh, well.... Life changes....
Dirty Don
05-22-2012, 04:20 AM
Have a spoon or 2!
Psyborg
05-22-2012, 04:31 AM
Bummer VDub...hopefully you'll start feeling a bit better with the increased medication. Is the arthritis a nuisance thing or another serious issue?
Actually, I don't feel "bad". Mentally, I'm ok and I seem to have enough energy, but my muscles and joints let me know they aren't happy if I move too much or too fast. Unfortunately, I can't take any NSAID's -- big bummer.
The psoratic arthritis is more of a nuisance right now. It's hard to tell if the aches and pains come from the wegs, drug side effects, the arthritis, or just getting old. I could have some osetoarthritis mixed in there, too. Hard to say at this point.
There's not much question that my immune system is going through some traumatic times. Given how quickly some of these issues are coming about, it will be interesting to see how much further things go in the next couple of years.
I try not to worry about it and just press on.... I do what I can and try not to over do it.
HopeinTN
05-22-2012, 07:51 AM
I think my favorite golfer on the PGA tour was recently diagnosed with PA. I hope your joints start feeling better real soon. Take it easy.
Three rare diseases might just give you the record for most bad luck. What are the odds of anyone having all three at same time--one in a billion or what? Glad you are still able to function and get some things done. Nice to hear from you again.
Debbie C
05-22-2012, 11:02 AM
Sorry u r hurting so bad,hopefully the human growth hormone will help alot of things. At least u r washing and waxing your RV..I've been looking at my jeep for the last week thinking about doing the same thing,but we are supposed to get alot of rain tonite so I may just pull it out of the garage and let nature take its course ! Takle care and I hope u start to feel well very soon.
Dryhill
05-22-2012, 11:54 AM
Having three rare diseases at one time must make you rare enough for an entry in the Guiness Book of Records, mind you it does seem an extreme way of getting in the book! I hope the MTX helps.
I have found the best solution to cleaning the car is pay someone else to do it. But to be honest I was doing that long before I was diagnosed as I hate cleaning cars. There used to be a teenager who always seemed to want me to take him to his home down a really muddy farm track when I had, had my taxi washed and it was all nice and shiney.
Jim
Yes, vdub, life changes. But I am pretty sure that you do not find number 3 to be a charming experience. I would say that it is important to keep moving, when you can. Once you stop, it is hard to start up again.
Al
Once you stop, it is hard to start up again.
I believe you are 100% correct about that. It's that whole "moving" part that hurts. :-)
Oh, well.... Life changes....Yes, life changes. That is why they call it life, after all. Yet there are changes, then there are changes. We hope for a net gain, overall--cashing it in, as it were, at the last minute. It would be great if we had no aches and pains slowdowns and other assorted crap until that last minute, but it doesn't always work out that way. My wish for you, vdub, is that you can fight your way through those aforementioned negatives and just enjoy everything. Take your clean RV, for instance, and dirty it up visiting your daughter. (Dang--writing this has really tired me out....)
Al
Dryhill
05-27-2012, 12:27 PM
Of course this disease is wonderful for me as are the aches and pains plus tiredness oh and not forgetting some of the side effects of the meds we take. All these points give me something to really moan about to my customers and who has ever heard of a taxi driver that did not moan about something?
Jim
Of course this disease is wonderful for me as are the aches and pains plus tiredness oh and not forgetting some of the side effects of the meds we take. All these points give me something to really moan about to my customers and who has ever heard of a taxi driver that did not moan about something?
JimIt's all about customer service, eh, Jim? What a professional!
Al
Dryhill
05-28-2012, 07:30 AM
It's all about customer service, eh, Jim? What a professional!
Al
Yes a professional moaner!
Jim
Yes a professional moaner!
Jim
But at least you are a pro at something!
Al
It is a reality check for me that no matter how bad I have it, to know that somebody has it worse than me. People need to hear that. Yes, you are providing a service that few others can when you share your unique and considerable troubles with others.
Dryhill
05-29-2012, 10:41 AM
It is a reality check for me that no matter how bad I have it, to know that somebody has it worse than me. People need to hear that. Yes, you are providing a service that few others can when you share your unique and considerable troubles with others.
Oh yes! I know when I get down and start feeling that life sucks, I just think of some of the people on this site and how much worse it is for them. I might still feel life sucks, but hey not nearly as bad as it could be.
Jim
Lightwarrior
05-30-2012, 04:56 AM
Of course this disease is wonderful for me as are the aches and pains plus tiredness oh and not forgetting some of the side effects of the meds we take. All these points give me something to really moan about to my customers and who has ever heard of a taxi driver that did not moan about something?
Jim
You are golden Jim :thumbup:
Sangye
06-07-2012, 06:13 AM
vdub, that news sucks! I hope the mtx works well to get and keep it under control and gives you some relief.
I'm not sure PA is considered rare, though. It is a very well-known and well-studied disease. Easy to dx. Any doc can rattle off the signs, symptoms and knows the problems associated with it. That part is good at least. I'm glad you're still able to plug along and do everything you want.
You're exactly right, some say it's rare and others don't. It's list on NORD I believe, but maybe it was the other rare disease listing. But, it really doesn't take too much to be considered rare.
For the past couple weeks, I have been feeling pretty decent. I'm not sure if it's the mtx or the hGH. The hGH is a couple weeks ahead of the mtx, so I suspect that is a big part of feeling better. I normally feel pretty rotten when I get up in the mornings, but an hour after I take my cocktail of drugs, I'm good to go.
So how are you doing? Did you just move to a different part of the house? Nice to see you back!
Sangye
06-07-2012, 07:46 AM
Wow, that's great to have energy in the morning. That'll improve your life for sure!
I moved a couple weeks ago, about 3 miles away but it seems like a million miles away. I really love the new place. There are some difficulties but I am reconnected with nature, which is just wonderful.
That's great! I'm glad you survived the move and are happy with it.... Good deal!
Dirty Don
06-07-2012, 08:00 AM
I moved a couple weeks ago, about 3 miles away but it seems like a million miles away. I really love the new place. There are some difficulties but I am reconnected with nature, which is just wonderful.
Congrats on the move and finding a good spot again! Always difficult, but you're tough...
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