All posts filed under: Self Management

What is it that I do to help myself

Stronger with exercise

  October 2019 I am amazed that I feel so much better. It has been a gradual process, a yearlong process. Recovery from the treatment of a rare uterine cancer is long, discouraging at times and scary at others. I say scary because the fatigue and the use of a brain that seems murky and sluggish is not something I would want to live with permanently. My fear was that this mental and physical slowness might just be permanent. So, I am relieved, quietly jubilant. My spark has re-ignited and I feel alive again. I am now able to go to the gym without being worn out for the day. My legs are stronger. I am becoming sturdy. I am reading again. I just finished Educated by Tara Westover and thoroughly enjoyed it. Her evolution from a brain washed, isolated child into a creative, educated and accomplished woman is inspirational. In the last few months I have found a comfort zone in riding the recumbent bike for 45 minutes three times a week at Planet …

RA, Movement and the Slippery Slope

I need to give you some heartfelt advice that is as close to a warning as I can get. My horrific experience this last year with a hip that was totally worn out put me in a dangerous situation that was as close as I had come to spiraling down the slippery slope to forever. I have rheumatoid arthritis. Those of us who have an autoimmune disorder understand what I mean when I say I have an overwhelming, incapacitating fatigue when I have a flare. Over the last five years I have learned to slow down when the flare signs start to blossom. To take care. So, this last year as the RA pain plus the pain in my hip increased, I did just that. I slowed down. Unfortunately, it wasn’t a flare that passed with additional Medrol and rest. It was a bone on bone raw joint pain that worsened with each passing day. I became debilitated. I was weak. I was living in pain. My doc provided OxyContin and tried very hard to …

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. 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. This is an old rose that was originally brought …

Four years with RA

It 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 …

RA, stuffed green peppers and pacing

My podiatrist thinks people with RA have an amazing positive attitude. He says it is unique to his patients with RA. I can understand that. We have no choice but to manage our disease. So we do. We plod along solving our issues for pain and all the issues large scale damage to our bodies’ joints give us.   If we fail to pick up the responsibility, even more severe pain and disability are but steps away. We figure out how to manage grueling pain, random flares that send us to Medrol packs and heavy pain medications. Limping around on feet that feel like numb bricks. Energy that seeps away until we are but rag dolls wishing for rest. Learning to manage a painful existence isn’t easy. Those of us with RA just do it. We are experts on hot packs, splints, braces, pacing, and on it goes.  Pacing works well for me. I manage a lot following the concept.  Generally, it is working for short stints interspersed with resting activities. My pain medication is on …

RA: to run and hide or to jump into the fray

    I have passed the three-year mark with the official diagnosis of rheumatoid arthritis.  I am better in some ways. I can work the disease better. I am worse in some ways. The damn thing just won’t go away. I remember when I realized that I only see my rheumatologist at best every six weeks and at worst every three months. I realized that I was on my own most of the time. I was on my own to manage my rheumatoid arthritis, two cancers, my home, my life. And if I didn’t take charge, no one would. At 72, I had better get busy. I did think about it. One choice was to withdraw into myself. My rheumatologist said many do. I also had the choice of focusing on the here and now and managing my situation. Historically, when I have been in a bad place I have felt sorry for myself a bit. I call it whining. A little is okay. It is just something a person sometimes needs to go through. …

RA Tool Hand Exercises

Another asset in our RA tool box is hand exercises. We need to maintain our flexibility and our strength. Deciding that I needed to be able to do more for myself, I asked my Doc to send me to the Albuquerque Health Plex Physical Therapy Hand Clinic. Wow!  is all I can say. My hands were thrilled with the weekly professional paraffin wax treatment. I learned a set of exercises that will help me maintain my hand function. I do them daily. They can be done anywhere.  Below are instructions for a few. I was fitted for hand orthotics custom made for me. I have them for night use when I am in a flare. My hands are protected while I sleep. I asked and I received. I am also fortunate to have a physical therapy department that is expert in the treatment of Rheumatoid Arthritis. Finger Walking Place fingers and wrist on the table palm down. Hold thumb in hitchhiking position. Walk each finger one at a time toward thumb. Return to original position …

gardening notes

Albuquerque will be 95 today. Yesterday it was 98. We missed the set of super hot temperatures for July. So we are just catching up. Blue skies. Nice. This is the Rio Grande. We have plenty of water in it this year. And now we have more. Torrential downpour came later this afternoon. Reminds me of Miami. I am happy to see the rain. I would dance it it but the lightening forbids it.  I have those big office wastebaskets to gather water where it comes down the hardest. This is great for my RA as I just need to scoop the water in a little bucket to water container plants. I feel like I am doing a good thing. I have passed out of the RA Flare Fog. Don’t know if it is residual from the Medrol Pack or the Orencia starting to work. I am cheering for the Orencia. Feels so good to move.  Hope it lasts for awhile. Back out in the yard. This is Apricot Sunset. Climber. Strong and beautiful.  Roses …

My RA 10 minute exercise plan

  Repeat after me Move! Historically, I have always been a mover: swimming laps, walking a big dog, yoga classes, physically active job, cancer rehab, silver sneakers core, tai chi, gardening, etc.  RA changed a lot of that. I reached a point where I was so sick I could hardly move. I moved only because it hurt more when I didn’t move. I don’t think anyone understands how hard it can be just to get dressed. Running errands is exhausting. Going to the gym, just a dream for the moment. I cannot walk far  as I have bad ankle and foot damage. Going to the gym, for now, feels like planning a trip to the moon. However, I know that muscle strength, flexibility, aerobic conditioning are vital to RA stability. And it needs to happen every day. When I feel better, I swim laps. In June it was a quarter mile free style. Felt good.  Presently, that seems overwhelming. Not the swimming but the dynamics around it. I have devised a ten minute exercise set …