RA, Biologic Medication and the numbers
The biologics are wonder drugs for some, but not for all.
All posts tagged: Blogging 101
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 …
Four years with RA
I was four years into my RA when I wrote this article. As I said that we are responsible for managing our disease. I still feel the same..
Four years of RA
I was diagnosed with RA four years ago, this month. The first few years were whirlwinds as I was also diagnosed with two cancers that each involved surgery and radiation treatments. My RA moved to the back seat then to the front and again back and forth. Now it is center stage. In 2015, I was started on infusions of Orencia. Once I realized that the biologics only help your RA by about 50%, I settled in and appreciated that they helped that much. In July the next year, I developed a horrific flu. I haven’t had a flu for years. It was exhausting. Plus, the Orencia was not working any more. I started having bad flares. My rheumatologist stopped the Orencia. After a few weeks, I was started on infusions of Remicade, a TNF inhibitor. By the third loading dose, I was having a severe flare plus I was having a bad reaction to the Remicade. I was ill. It took two months for the Remicade to clear my system and for …
RA Journal 10-17-16
I took the last pill in the medrol pack this morning. I am back to sleeping again. I feel better. My feet as well as my hands remain a problem. Swelling. Stiff. Pain. But manageable. After being a recluse for a week, I made it out to Kohl’s to use my 30% coupon yesterday. Fall clothes and a few Xmas presents. Panera’s for squash soup and salad. Michaels for a Lion’s Brand wool that is not easy to find. It is cranberry, bulky and beautiful. Home to rest. Today is another sunny day in ABQ. Still a warming fire is pleasant. Life is good. The medrol pack has saved me again. I was very ill and was getting discouraged. I don’t know how long this improvement will last but I will enjoy it while I have it. It feels like a stay of execution. I came to the conclusion a while back that my RA is progressive and that there is no cure. There is only symptom relief. For some, the biologics hold the promise of damage control. That promise at best is for 50% of …
Test Week
Since my Rheumatoid Arthritis and my two cancers were diagnosed in the same year, it is logical that milestones occur the same way. In one week I had tests for my two cancers. On Monday I had a Thyrogen shot in the butt. The medication acts like TSH, a hormone that normally stimulates your thyroid. ( $1400 each without insurance, $135 each with). Tuesday I repeated Monday with another shot. On Wednesday I went to nuclear med for a radioactive pill. I am not radioactive. I feel like I am. I am also given two containers of MOM. The tech said it was a mild laxative. One tonight. One Thursday night. it wasn’t mild. I was also instructed to eat lightly. On Thursday I went to Radiology Associates of NM for a diagnostic mammogram. I do love this place. Friendly people. Coffee. Special cute patient gowns. I felt that I would be fine, but I had the vivid memories of when I was not. So I still worried. Lucky me! There was no sign of cancer. A …
Walking with Wisdom Woman
RA Attitude After an MRI of my lumbar spine. Seeing the bad news. Being sent to yet another specialist. Spine and Pain Clinic. I was totally discouraged. In the same small office complex, I visit my rheumatologist, my neurologist, my oncologist, my palliative care nurse and now a pain doc. And this is just one of the office buildings I visit. I was discouraged because I could see it as another proof that my body was falling apart. Am I on a steep slippery slope looking downwards? Scary. I was scared. Then, as if by magic, my Irish-French Canadian genes kick in. What to do? A long time ago I had come to the conclusion that I needed to keep my primary focus on the activities of my life. My writing. My family. My friends. My Hobbit House Projects. I would not ignore my medical issues. I would care for them well. And then I would bring my focus back to the activities of my life. Sometimes I could do more and sometimes less. It …
Ruth explains RESET
The delicacy of the mahogany writing desk. Petite. Leather inlay surface. Slender wood turned legs. Just right for Ruth. She sat back straight in her neat smoothed dress. Her eyes twinkled in greeting. “I need help,” I said. She glanced toward the strait backed chair next to the desk. I sat. “I am discouraged. Exhausted. Defeated. Weak. Worried. In pain. All of it in a jumbled pile in my mind. Too much.” She smiled her little smile as she looked into my eyes. “It does sound like too much,” she agreed. “It weighs like an anchor on your soul leaving you feeling stuck. You need relief.” She understood as always. “Maybe it is time to RESET yourself. You are overloaded with tough stuff.” “Let’s have tea and sit in the big cozy chairs, “she suggested. As we sipped our tea and munched on lemon cookies with buttercream frosting, she explained the process. The first and most important RESET step is the Purge. The purpose is to empty the mind of all concern. Meditation can be too …
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 …
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