RA Holiday

Christmas Day is only 10 days from today and I have not put up a single decoration, not even a wreath. I haven't done much shopping either. I guess I've just been ignoring Christmas this year. But, it has not gone away. Or, maybe I'm protesting. It does feel like a protest.

I know I need to pull out the tree and a wreath at minimum. With a bum thumb on one side and a bum elbow on the other, I just can't do it myself. That is the first problem. The second problem is that I just don't feel up to it. I don't have the energy and I just don't feel like fooling with it. It should be joyous and wonderful, but it is going to be a painful chore. I don't see myself singing Deck The Halls or whipping out some Christmas cookies and hot cider. I'll hurriedly throw up the tree and fling a few ornaments at it.

I just can't afford the shopping at all this year, thanks in part to mountains of medical bills. Unfortunately it is a little too late to start knitting sweaters or building bird houses.

If I HAVE to celebrate then I just ask one thing. I'd like a long holiday from RA. Days off work are very nice, but I need a break from this disease. Do ya think ol' Father Christmas can handle that one?

Great genes?

I just got results from my yearly lab work and it is fascinating to me. My 30ish doctor told me he is jealous of my cholesterol numbers and that I must have great genes. Everything looked absolutely perfect except for my white count and my platelets which always run high because of inflammation and prednisone.

The results are fascinating to me because they paint a picture of perfect health when I have more health problems than most people my age. I regularly see a cardiologist, dermatologist, physical therapist, podiatrist, pulmonologist and rheumatologist.I'm walking around with the cholesterol numbers of a 16-year-old, but I can be outrun easily by a senior citizen. I'm not ungrateful for those numbers though. At least something about my health is great. I guess it's only fair.

My good friend, Ernie

Osteoporosis

In 2005 I learned, from my first DEXA scan that I had osteopenia and I tried Fosamax for a little less than a year. I stopped taking it because I have such awful dental problems and didn't want the Osteonecrosis of the jaw.

In 2007, I had another DEXA scan which put me a -3.5 at the right hip, or severe osteoporosis. I had a hip biopsy at our university hospital after being referred by my gynecologist. She thought they might prescribe Forteo, but they didn't. They offered Fosamax or Evista. I decided to take neither.

This year I've had two rib fractures, one from coughing and one from leaning on the handle of a grommet setter. Neither of those activities should have caused a fracture. Because of the new "fragility" fractures I had another DEXA and found out that my osteoporosis has improved. My new score at the right hip is -3.0. So now I'm really puzzled. Why am I fracturing now, if it is better.

My rheumatologist has offered Reclast, and I think that is what I'll do. A once-a-year infusion sounds so much better than any of the other bisphosphanates. He said it really works too. I hope that it does.

I plan to exercise more and keep up the calcium and vitamin D. I'm even considering light running. I wonder if I could do it on a regular basis?

Do you suffer from osteoporosis as well as rheumatoid arthritis? How are you treating yours? Any successes?

It's 2:30 and I am still awake.

This happens to me all the time. I am hurting, but if I take narcotic pain medication, it keeps me awake, so I avoid the narcotics late at night. I have taken OTC pain relievers to try and get comfortable enough to sleep, but it hasn't happened yet.

I'm going back to try again. I think I'll try TV. Wish me luck.

Give up or keep fighting?

I've had several years experience with RA now and I've given up many activities that I love. Should I give them up forever and accept the loss. Or, should I keep hope alive that I'll get better and be able to go back to enjoying them again?

If I accept and move on, it is likely I'll find something else to feel passionate about, something else to spend my time on and maybe even forget about the things I've lost.

If I keep the hope alive, I might just work harder at getting better. Maybe my determination would actually influence my treatment and my health.

I waver back and forth and haven't found the answer for me. I haven't given up yet, but perhaps I should. I still have a space in the garage where I used to repair and restore old violins. My music room with all the stringed instruments I've collected over the years is quiet now. I have saddles and bridles and hiking boots that gather dust and sneer when I walk past.

I know I could make a mint if I were to sell the things I may never be able to use again. (And with the cost of this disease, I could use it too.) But, I don't know if I'll ever be able to let go of those parts of "me". This is one of the hardest and most painful aspects of RA, for me.

I'd love to know how you feel and if you have accepted your losses and moved on or if you are a waverer like me. I hope you'll leave a comment.

What's this?

If you can't tell, this is bleeding under the skin or purpura. I've had these pop up regularly (there is always one or more there) in this same spot. I've shown this to my GP, who blames prednisone. I've shown it to my Rheumatologist who says that if it were more widespread, he'd worry about it, but he doesn't know what is causing it. This thumb has been my problem joint for over a year. I've had cortisone injections twice and it is still a problem.

I'm not quite sure why this is happening. Sometimes it is one big spot, and sometimes it is quite a few small ones. Anyone have any ideas?

What I used to be.

I used to be an artist, a semi-professional musician, an energetic runner and hiker, a soldier, a do-it-yourselfer. That is who I was.

RA has made me a watcher, a listener and a wisher. It has also made me a mourner.

I've been feeling sorry for myself a lot lately. I guess in the beginning of my adventure with RA, I really believed that when I took the awful medicines I was prescribed, and suffered the countless side effects, that I could go back to being the active me again.

I haven't taken one medicine that gave me back any of those things I used to be. Do I still believe it is possible? I don't think I do.

It seems I dont' get anything back at all. More and more is taken from the things that make me who I am or who I believe myself to be. I'll somehow have to learn how to keep a little of who I am and protect it. I'm not sure I like the me I am now.

I hope I can find a way to get through this and to make at least a part of this experience a positive one. The reality of this being a forever thing and not something transient or curable is awfully hard to accept. I'm not sure I can.

It's a beautiful fall day

A beautiful fall day has me longing to go for a hike. I love the smells and sounds of fall. I'd like to take some photos of the blazing oranges of the trees in the nearby woods. If only my body would cooperate.

The ribs I broke a couple of weeks ago are still quite painful due to the lingering cough from the cold last week, and my thumb won't behave even after injections last Wednesday. My right elbow is the most painful, though. I also can't straighten it and it makes most everything difficult. The "bird" finger on my left had is very swollen, but at least it isn't screaming at me.

Today, I hope to manage to do the laundry and minimum cleaning. I'm just not quite up to much more.

This is not what I used to do with a beautiful Saturday in the fall. I am resentful.

Only the beginning . . .

I was diagnosed with rheumatoid arthritis in 2006 and have had some very trying times since. My life is just not the same and I am just beginning to realize that it never will be. I still have a lot of trouble accepting what I've lost to the disease.

This is the beginning of what I hope to be the best therapy for me and maybe it will help my readers to understand their feelings and cope in their own struggle with rheumatoid arthritis or to help a loved one cope.

I'm not going to post a great autobiography about the history of my disease. I'm sure that if I start fresh from here, you'll get the history as I go along. If you have questions about my experience or want to offer advice, please feel free to leave a comment.