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Gardening and RA

April is a great month for gardening in New Mexico. Sunny, 70’s. Roses blooming. Oklahoma Red bud a riot of color. I am enjoying every bit. This week I planted a Lady Banks rambler on my back fence.

A new Lady Banks, just planted

There have been times when I never thought I would be able to kneel and happily dig in garden dirt again. Right now I can and I am very happy. In the four years since I was diagnosed with RA, I have learned to modify activities of my life. In the garden I have a kneeling pad for my knees. I buy the smaller size plant so I don’t need to dig a bigger hole and don’t need to haul as much garden soil. I have learned not to buy more than one or two plants at a time. And most importantly, I will relax with a cup of coffee and a book as a rest when my planting is done. The Lady Banks Rose is white and luscious.

Lady Banks Flower

This is an old rose that was originally brought from China. She is a wonderful addition to my rose garden.

Lately, I have been concerned with the progression of my RA. My feet have more damage and I cannot take the long walks that I once loved. The pain in my shoulders make it difficult to change clothes. Pain in my hip can be severe as well as the pain in my back. Both making walking difficult. Jaw, hands, wrists. Managing pain takes a lot of energy. Being in pain is tiring.

I know I have a poor prognosis. When I was diagnosed, I had most of the factors associated with a poor prognosis. Large number of joints affected, elevated ESR and C-reactive protein when diagnosed, low functional score early on, and radiologic changes. I have never been in remission even though I have tried most of the biologics. Life is a challenge for me as it is for the 50% of those with the RA diagnosis who have little relief from RA symptoms. Learning to manage the issues we have is as important as  taking the drugs we need to keep our symptoms under control. In the meantime a little rose garden is a soulful escape.

 

Knitting and RA

Last summer I had a strong urge to take up knitting again. I hadn’t knitted in many years and wasn’t sure I remembered how. I bought a book for teaching children how to knit and learned quickly that knitting was like riding a bike, once learned not to be forgotten. I enjoyed the projects. Easy. Big needles. Satisfying. The basket in the picture was one of the projects. Circular needles.

A few years ago I was sent to a  hand clinic for my RA. I learned a series of exercises to strengthen my fingers, hands and wrists. It was the most helpful process I had had for my RA. I still do the exercises. I have added knitting as another way to exercise my hands. I enjoy projects simple and repetitive and I enjoy projects with complicated precise instructions. I usually knit a bit every day.

There are times when I can’t knit. My hands are too inflamed. Sometimes my shoulder is too inflamed. So I just stop for a bit and carry on when I can.

RA is debilitating. All the RA drugs are palliative only. Yet they are important in that they can slow the destructive process. Recently I had a severe episode of hip and shoulder pain. It was scary on many levels. Pain. Mobility. And it was new.  Medrol saved the day for me. I have hydrocodone. But I don’t take it for this. Medrol is the miracle drug and it is at 8 mg over my normal of 4 mg a day. Remember 4 mg Medrol is equal to 5 mg prednisone.

With a disease that is a permanent part of life learning to manage is very hard to do. Yet it is an important part of surviving the ups and downs of a painful and debilitating disease. As time passes and my experiences with RA increase in number, I see that I am managing and I am happy that I can.

I am currently making Easter baskets for my family. They are small, colorful and charming. The bottoms are detailed and artistic. Satisfying and productive.

Four years with RA

RA Just sayinIt was four years this month that I was officially diagnosed with Rheumatoid Arthritis. Learning to accept my situation and learning to manage my disease was not easy. Pain is constant. It just varies in intensity. Fatigue is overwhelming and was constant the first few years. The RA process of medication trial and error was discouraging. Medication side effects were hard to tolerate. Underneath it all, the knowledge of living with a progressive disease was disconcerting.

Add to the mix, I was diagnosed with stage three thyroid cancer and breast cancer the same year that I was diagnosed with the RA. Both included surgery and radiation treatment. Yet here I am four years later. I am still struggling but I am surviving and maybe thriving.

I wake in pain. I go to bed in pain. Pain is discouraging and even depressing. Many of my joints are affected by RA. Fingers, toes, feet and hands, elbows, wrists, shoulders and jaw. So, I am blanketed in pain. I take meloxicam and methylprednisolone for inflammation. I take gabapentin and tramadol on a sliding scale depending on pain severity. I have hydrocodone for occasional severe pain. It all helps. Presently, I am in a situation where I take tramadol and gabapentin before I get up in the morning, early afternoon and early evening. I do have a heated mattress pad and a sleep aid that helps me through the night.

I have special shoes with a wide foot and high toe box. I also have custom inserts. It is amazing how helpful these shoes are. They make the difference between walking and not being able to walk. Not pretty but I love them.

I have learned to pace myself. Gone are the days of endless energy. At home I rotate physical activity with resting activity. Reading or working on the computer alternating with activities such as housework and light gardening. Most of the time I am able to accomplish a lot. Sometimes I just need more time to spend reading or watching favorite movies or series.

When I go out, I plan my stops and there are not many. Going out is exhausting. I have soft ankle braces that help. I have a handicap parking permit. I used to park as far from the entrance to a store as possible. Now parking close to an entrance helps me get through.

I have been on Rituxan, Orencia, and Remicade. The Rituxan didn’t work. The Orencia worked at 50% for about 10 months. The Remicade made me sick. I am reluctant to try another biologic. Presently, I am on Methotrexate injections and Plaquenil. I take methylprednisolone (Medrol) dose packs for flares but do not take a pack more than once a month. As time goes by I may need to try another biologic.

Initially, when I started methotrexate, I was nauseated and had diarrhea. The diarrhea has passed but I still am sometimes nauseated. Methotrexate helps me. My liver and kidney function tests are always good. I have eye exams yearly since I am on Plaquenil. My exams are also good.

I am managing for now. I am active in a cancer organization, Cancer Support Now. I am on their board and several committees. I manage their data base. Most duties can be done from home. I enjoy the company of this tireless group.

I write. I am writing a book about the three-year nursing program. They were the best hospital nurses and have faded into history. I am midway through writing a book on RA.

I am establishing my yard as a natural habitat. I enjoy watching the birds and quail as I sit here writing this.  Fun to see the birds taking baths. Cats wander through wishfully thinking birds. Nite time draws nocturnal critters for water and seed.

I am fortunate that I am retired.  I had to close a satisfying business because of my unstable health condition. I can now adjust my day to my physical needs. However, I appreciate the difficulties of young women raising young children while coping with the challenges of RA. I also appreciate those who need to work to keep the insurance benefits that pay for RA treatment. It makes managing RA difficult and discouraging.

Regardless of our situation those of us with RA must take ownership of our bodies and our disease. We alone are responsible for managing. It is a tough thought. Doctors, physical therapists, pharmacists, nurses, family and friends are on our team. Yet we are the ones who need to figure out what works for us. It is not easy, but to take ownership of our RA is empowering. Pacing, pain management, some RA drugs and satisfying activities help me cope. I am fortunate to have a rheumatologist I respect and trust. Feeling grateful for the good things helps me manage through the bad times.

I would love to hear your story. What works. What doesn’t. My email: marymann@comcast.net.