I hate the ups and downs of RA and FM. I can be so bright and energetic at the beginning of a day and come crashing down by the afternoon.
That's what I did yesterday. It was my time to feel depressed and hopeless. So, I do get that way no matter what encouraging words I might try to send your way.
Mostly, I am worried because I now have five major joints that impact my function on a daily basis. I already work a sedantary job that is mostly low pressure and I only work 30-35 hours per week. And, I just feel like I can't make it any more.
I keep trying, but my range of motion on my shoulders is decreasing in spite of physical therapy. They say that they can't operate to fix it. I already have a terrible time getting around because of both of my knees and I have fluid on my hip that gets really painful at times.
When I add to this the fatigue and pain that we all seem to experience, I feel like I have just reached my limit. So many things are going right in my life now, but I feel like the Enbrel is just not doing the job.
I am on so many medications and just seem to be getting worse. I want to go on disability just to get a rest from this constant battle of pulling myself through a work day. But frankly, I am afraid of the process.
But the thought of trying to keep going into a job where I know sitting all day in front of a computer and not being able to move about or take a rest is becoming an overwhelming nightmare. Just how much pain is one expected to endure. Plus, I am really afraid that I am doing permanent damage by continuing.
I don't know what I'm asking here. Just thoughts, I guess.
Have you tried Remicade? I'm having incredible results so far! I see improvements already and have only had one infusion... also, try icing your knees. I was having major issues with mine for several weeks. I bought icepack knee wraps and used them each night for 20min... huge difference. Swelling and pain went way down, now they barely bother me, especially since the infusion. I know it's different for everyone... I'm just letting you know what worked for me. Good luck and keep your chin up. You CAN make it through this. Don't stop venting to us!Trish,
I was doing really well on Remicade but I can no longer get it because my insurance won't cover it. I loved Remicade. It frustrates my doctor too. The only way I got before is becaues I didn't really have insurance and I qualified for Patience Assistance. But evidently, I am now over that limit because I got a small raise.
My knees don't hurt so much as I can't get around very well. I wear knee braces and even trips to the grocery store are overwhelming. It is really function more than pain with them. Eventually, they want to replace both knees but as long as there isn't much pain, I rather not do that.
Deanna--
I can totally understand your frustration. I have found myself being really down, especially this weekend. As I read what I have posted over the last couple of days, I can see a difference from when I have posted while feeling good. I am allergic to the shot/iv drugs so I am stuck on mtx, pred and imuran. I have hit a plateau with my weight loss and that has added to my bummer feelings. The only I was able to get my Remicade covered was to have the dr submit it as an office visit. Maybe it would work for you? My friends can always tell when I don't feel well because I walk like an 80yr old woman
Becky
I see my doctor tomorrow and I'll ask whether they can do the Remicade as an office visit. I know they really tried to work it out before. But you never know, maybe they didn't think about that.
But I am also going to be asking about filing Workman's Comp and Social Security. I just can't bear this any more.
If I could work from home, that would help. My doctor is all for that as he has strongly recommended numerous times. But I cannot do it through my present job. It is a hard transition to make and I would lose my medical care.
I really don't want to give up working. But I just can't keep up the same pace any more.
Deanna, A sit down job would be way more painful for me than my ranger job. My butt, hips and knees always hurt worse sitting down. I like the different tasks of my ranger job. I wish I could figure out if I should follow through with disability. It is so scary. Both my doctors support me but the loss in income and purpose has me scared
It is hard to sit all day. This has been the most sit-down job I've ever had. At home, I do much better because I can interrupt my routine, move around, exercise, take a break.
But at work, I share a cube with someone else and I pretty much expected to be in that chair except going the bathroom or taking lunch. I barely have room to work, much less any other movement.
Being a ranger sounds like an energetic job, being outside, moving around. And, your heart sure seems to be in it. I wish, for you, you could find something that didn't put quite the stress on you body but gave you the elements you enjoy most. However, not really knowing what your work entails, I don't what to suggest.
I know that to get disability, that they must be sure that you cannot do any other kind of work. I certainly cannot do a lot of standing or walking. My job is about as sedantary as they come and I am having a great struggle doing it.
Maybe you could list all the things you love most about your work and what you fill you do best. It's possible it would translate into something else.
But I know you also said that you wanted to devote that time to your family. It's possible if you were not working, you could travel to be with Brett or Kelsey more. Or, you make a world of refuge for them in your home. Life is never a vaccumm. It always fills up.
dbmy3,
I'm glad you understand about the worry over damage. Right now, that really concerns me. And, I know that no one else is going to be looking out for me regarding that. On the weekends, I do need the rest just like you described. The truth is, I need it during the week, too. Physically, the last year has been rough. A few months ago is was severe chest pains which turned out to be a combination of high blood pressure, bronchitis, costochronditis and heart problems. Then, now I'm struggling with this shoulder thing.
I need to more physical therapy than I have the time to do. Everyday is push, push, push to the limit.
I am terrified of trying to go on disability. But if I don't, will I reach the point that something becomes so damage that I will be even able to take care of myself? I am very independent and I don't want to lose that.