All posts filed under: Self Management

What is it that I do to help myself

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 …

Massage and RA

Garrett is amazing.  He is tall and lanky. Arty. Welcoming. He is a student at the ABQ School of Massage and he gave me a massage at their free cancer clinic. I remember my first experience. Coming out of the massage room, I felt renewed. Massage therapy started as a new adventure for me.  My RA needed help.  So did I.    Massage therapy seemed like a good thing to try. I made the appointment. After the first massage,  I received an email from Garrett asking if I would be the subject of his case study on Rheumatoid Arthritis. I would receive six free massages. He would ask me questions about my RA.  Of course, I said yes.  I needed another tool in my RA toolbox. I am a lucky woman.  My adventure continues. Today was my 5th massage. I follow the routine of each massage. I check off my choices on Garrett’s  before pain scale sheet. Next I undress in the massage room and slide under the sheet and blanket.  Lights are low.  A quiet space.  …

A sometime treacherous trip made easier

  Rheumatoid Arthritis brings  new meaning to the expression ‘adapt or perish’. Life will never be the same once diagnosed with RA. Life can be very good. It can be great. In RA a good life needs help. It needs adaptation. I do remember the days when I would park at the farthest space in a parking lot just to get just a little more walking into my day. When RA hit me like a lightning bolt and started its invasion of my body, I no longer had that luxury.

A gift from heaven

When I saw his face I knew instantly that we would be a great match. He had that feisty, can take on the world look. Round face, green eyes, tabby markings in a huge Main Coon Cat. I saw his face on the Animal Humane Website. I met the photographer who had taken his photograph, a volunteer. I did not get that image, but it had been the one that drew me in. I went cross town to the Animal Humane site on Virginia. I looked for him. He was not in the general cat areas. It was the photographer who found him. On his kennel was a sign: You choose your price. He was on the higher shelf. I invited him down. He came. Gorgeous face. His body had been shaved except for his head and a big puff at the end of his tail. He was a bag of bones.  He was 8 years old, deserted and on the big decline. I took him home. Now he eats a breakfast of fish and a dinner …

RA: how to cope with more bad news

RA: how to cope with more bad news   For 80%, RA will be a progressive disease. That means for those who are being drug managed, the drugs will eventually not work anymore. That means for those lucky enough to have remissions, their disease will flare and incrementally get worse. That means for those with constantly active inflammation, like myself, the disease will continue to get worse.                     This week my bad news is that my disease is getting worse                                                                           and there are no more magic pills.                                                                                       …

Adapt and survive definitely not easy

You might wake up well rested, feeling pretty good. Out of bed.  Start moving.  Your middle toe starts hurting.    A piercing pain shoots through the bottom of a foot.  Just keeps going until every joint in your body in inflamed and in pain. All had been well this last week. Lots done. Exercise class included. Pain level at a simmer. No need for the narcotics. Pleasant. Then blindsided!      Unpredictable!    Discouraging! Now,  it is just hard to exist. Fatigue has joined the rest.  Fatigue feels like an overwhelming exhaustion that makes thinking or doing hard to do. Just simply surviving is hard to do. Each of those joints supporting the 28 bones in each foot cry out for attention. Their chorus is joined by the joints supporting the 27 bones in each hand. Then there are the ankles, the wrists, the shoulders, elbows, and the joints  of the chest bones. To stop is to adapt. There is no choice, not really.  Time for a rest day, a veg out day, time out. …