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Archive for the ‘Rheumatoid Autoimmune Disease’ Category

Two new articles I found related to RA and cardiovascular disease:

http://www.nhlbi.nih.gov/health/health-topics/topics/ms/

http://www.sciencedaily.com/releases/2011/08/110814223811.htm

Really good and understandable.

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RA Warrior posted this topic to HER blog, so I decided to post about this topic to MY blog – from my point of view.

What is it like to have RA? In the middle of the night, I wake up in the middle of the night and I have nails being pounded through my toes, my feet, my ankles and/or my hands. I try to be quiet, my husband needs his sleep (heart and lung problems), but eventually he wakes up anyway and “reads my body.” Don’t know how he does it, but he knows exactly where I’m hurting without my telling him. He knows if I’m hurting even when I’m asleep. He gets up and gets a pain pill and a glass of milk for me, then he lightly rubs the areas that are hurting worst, and then holds me while I cry until I go back to sleep.

English: http://rheumatoidarthritis-symptoms.c...

English: http://rheumatoidarthritis-symptoms.com – Rheumatoid Arthritis in the hands (Photo credit: Wikipedia)

What is it like to have RA? I am sitting in my recliner with my feet elevated, dozing a little. Suddenly I feel like a burning poker has been pushed into my shoulder. I didn’t move it or anything, and the sudden onset startles me as well as torturing me. I don’t dare move my shoulder, so I use my other hand to take yet another pain pill with some warm tea. Eventually the pain subsides a little. Oh, yeah – tomorrow is methotrexate day. Maybe this attack is because I’m at the end of that MTX cycle? I don’t know. I never know.

What is it like to have RA? I’ve been looking forward to my Red Hats meeting for 4 weeks. It will be at my favorite barbecue place, and it’s a Luau! What fun! The morning of the event, I get out of bed and nearly fall when a sledgehammer hits my right hip. I put some ice on it, and take a pain pill. As it gets closer to time, I realize I won’t be able to go – again. I make the call they are so used to getting.

What is it like to have RA? My birthday party, planned by my children and grandchildren, which I have looked forward to for 2 months, is that night. I woke up feeling vaguely nauseous, but take all my pills anyway. The nausea increases along with heartburn, and I resort to Tums and things settle down some. I am able to get dressed and enjoy the party – from my wheelchair. Which means I can’t move easily from room to room to get to talk to everyone. What a bummer! But I do get to visit and chat with two friends who stay after everyone else has left. I “hit the hay” 2 hours later than usual, and am so keyed up I can’t get to sleep for 2 more hours. It takes me 5 days to recover.

What is it like to have RA? An hour ago, I dropped my cellphone. My hands are too sore to use the “grabber,” so I have to decide how to manage it – ask my husband (who is “huffy-puffy” with his COPD today), or try to bend over and get it myself. I bend over while sitting in my chair, then can’t get back up. I pretend to be looking for something. Finally, I get my back and hips unlocked, and am able to sit upright again. Hip and back are radiating fiery pain, but I just grit my teeth. Eventually, it subsides to a “dull roar.”

What is it like to have RA? Because my feet are numb (from nerve damage and from Reynaud’s Syndrome), my husband doesn’t want to let me drive – I can’t feel the brake pedal or gas pedal, and could easily have a wreck. My shoulders are chronically painful and restricted in movement – again a driving hazard. He has to take me everywhere I need to go, now. I’ve always driven myself – I’ve driven an old 1963 Land Rover, towed large travel trailers and parked successfully, driven an old truck, a VW beetle, an International SUV (before they were called SUV’s), and various vans and mini-vans. But now, I can’t even drive our Dodge Caravan – with automatic-nearly-everything.

What is it like to have RA? Gradually, and again, not so gradually, my life has come apart at the seams. I’m no longer the competent, employed person I always was – who could be relied upon to run errands on the way home from work, take kids to parties and picnics, who earned a good living, who taught on the university level, who got a PhD at age 53. No, I’m none of those things. Rather, I’m more and more helpless, terrified that my husband will die before I do – because I need so much help to do nearly everything. My husband does most of the cooking. He bakes all our bread. He makes our ice cream. Our meals – prepared by him – in the past several weeks have included: shrimp and mixed rice pilaf, Steak au Poiret, Biftek Haché à la Lyonnaise, tempura, Bagna cauda [look it up – it’s delicious], Boeuf Bourguignon, Beef Stroganoff, fondue (from scratch, not a package), and pork roast with maple-mustard sauce. He made our breakfast sausage from scratch (ground pork, seasonings, and a little maple syrup or honey), he has made eggs benedict for breakfast on weekends, baked incredible brownies, and made some great blueberry muffins. He does all that – because he knows what I like to eat, and knows I can no longer cook regularly. Occasionally he will let me make supper, but breakfast (1 hardboiled egg each, 1 slice toast, and coffee) is usually mine to make.

That’s the way it goes. During the day the pain can be just as bad, but I have other things to divert me from the pain, so I seem to be able to ignore it better, or put myself into a different “place” so I don’t react to the pain.

But there are other times, between flares, when I have almost no pain. Can’t predict when it will occur, either. Rain, shine, snow, sleet – could be bad, could be relatively comfortable.

I think one of the things that bothers me, is that the joints in my hands and feet don’t look bad – not like my mother’s did. Her hands were horribly deformed, as were her feet. Her knees looked like softballs in the middle of her skinny legs. We would bring her to our home for Thanksgiving or Christmas dinner, and she’d only be able to “cope” with the excitement and activity for a short period of time, then I’d have to take her back to the nursing home with a box of goodies that she never got to eat. I learned to prepare that box ahead of time and keep it in the refrigerator. She would eat the things in the box over the next 2 or 3 days.

My joints swell a little, then usually go down, leaving no visible trace of the pain I have. My kids have problems explaining it to their children, but eventually the grandchildren will grow up and, hopefully, understand.

Some mornings I wake up and I’m ready to take on the world like I used to. But it never lasts.

Just DRAT! I HATE this disease! I HATE not knowing what I will and won’t be able to do until the morning or afternoon of the date. I HATE the fatigue, the dragging, down to the bone marrow weariness. Mostly, however I HATE not being the “me” I once was. I HATE being the person I have become.

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It seems that every article I read that discusses our lack of activity only points out that the public at large and the medical community in particular not only do NOT understand what living with Rheumatoid Autoimmune Disease (RAD – formerly Rheumatoid Arthritis) means, but also do NOT understand the actual amount of pain we experience. A very few examples:

Rheumatoid Arthritis and Exercise

Exercising with Rheumatoid Arthritis

Rheumatoid Arthritis Exercise Helps Your Pain

Tell me, just HOW can we exercise if our feet become involved to THIS extent?

Post RA abnormal fusing of bones of feet (ankylosis) By Hellerhoff (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

I’ve noticed that, although there may be no difference in my disability, my pain perception has become changed. What I once would have classed as an 8, I now class as a 5 on the typical “0-10” pain scale (which is totally inadequate for those with chronic pain, by the way). It doesn’t mean I function 3-points better, but just that part of chronic pain becomes background pain. It never changes.

Those with chronic pain may begin to only rate the “changeable” pain. At least that’s what I have discovered that I do. Acute pain is studied all the time. But what about chronic pain? And the kind of chronic pain (location in the body makes a difference). When I’m hurting, nothing, and I do mean nothing, will extract me from my recliner except the need to go to the bathroom. And then, I may need help just to walk to the bathroom. I’m not the only one. There are 1.5 million of us with varying degrees of chronic pain due to Rheumatoid Autoimmune Disease. Of us, only 20% are getting adequate relief from the various treatments being used. Only 20%. Another 30% are getting almost no relief. This leaves 50% getting anywhere from almost no relief to some relief to almost adequate relief.

So tell me, how are we supposed to walk briskly? Much less for 10 minutes? My best days I manage to go to the grocery store OR get my hair done OR visit one of my kids OR go out to dinner with my beloved and most patient husband. Not two much less three of these – only one – on a good day. I have to plan my week so that I do one activity per day – if it’s a good day. The days that I’ve had to cancel visiting with my kids and grandkids are too numerous to even think about. I’m the unreliable one in the family. I’m the unreliable member of my Red Hats group. I haven’t been to Church in 5 years.

If forcing myself to exercise would cure me, I’d do it. But from experience I know that it only makes me worse – it makes me go into flares, joints swell and hurt, and even more damage begins to occur.

What are the researchers thinking? What do they really know about rheumatoid autoimmune disease? How about some researchers who actually have RAD? People who are getting less than adequate relief from their third set of treatments are who we need doing the research. Then, perhaps, we would have fewer articles that imply that we who have RAD need to exercise more in order to get better.

We need the medical and surgical treatments that will PERMIT us to exercise more. And we need them right now!

How about all these splintery arthritis research groups getting together and pooling their money in order to conduct more meaningful research to find those treatments? NOW!

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