All posts tagged: New Mexico

Back from my hip replacement

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My hip replacement didn’t turn out to be as smooth as I would have expected but my hip joint is fine and all the severe pain I had before the surgery is gone. It is a relief and makes the experience I had well worth the effort. The surgeon said my hip was warn out so I’m very glad he decided to do the surgery. During Thanksgiving week I overdid walking with the cane and sitting too long. So yesterday during my physical  therapy appointment, my therapist and I decided I needed to stay with the walker when I went out and use the cane for practice only at home. My pain had increased and I wasn’t doing as well. Back to the drawing board. Time to let the inflammation in the hip heal and to follow the rules.  And to rest more. I enjoy doing my assigned exercises. Resting more is hard. I have had two RA flares since surgery. One was in the Rehab center as they had skipped my methotrexate dose. Why? …

RA Hip Replacement

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I am hopeful that my summer long saga of pain and futility are drawing to a close. My surgery is two weeks away. I am grateful to Ruth and her practical approach to problems. It is reassuring to me. After all my worry and anxiety,  I know I will be fine. I have only one more item to check off my list. It is an appointment to see my surgeon’s PA. My dentist gave me a pass. I had no oral infection. My primary met with me and did his part. I participated in a two-hour hip class which was informative but also made me anxious. I met with the anesthesiology nurse. I passed all my labs. My worries My RA will become a worsening problem as I will be off Medrol and meloxicam starting Sunday. My RA feet are badly affected as are my ankles. My tendons in my legs are also a problem when I walk. My hands, wrists and shoulders are also problematic. After taking the hip class, I became concerned that …

RA feet and orthotics

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My RA started in my feet. About 20% of patients are introduced to RA via painful feet and about 95% of RA patients eventually do have feet involvement.  RA struck my poor feet first.  Diagnosis was slow as my primary doc, an internist, later said I was too old to have RA and that the pulses in my feet were strong so my feet were fine. Once I was diagnosed. Methotrexate (MTX) was my first RA drug. The dose was gradually increased until I reached the max of 25 mg/week.  I tolerated the nausea and diarrhea which eventually passed.  MTX helped me but by this time my feet were in a lot of pain and I walked with great difficulty. I was sent to a podiatrist who declared right off the bat that he didn’t do foot surgery for RA. Fine, I thought. I had read about the horrors of RA foot surgery and I wanted none of it. I did need to know what would help. He did three things for me. He ordered …

EORA or YORA another RA category

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Imagine my surprise when I learned about the initials YORA and EORA. YORA is an acronym for Younger Onset Rheumatoid Arthritis as is EORA for Elderly Onset Rheumatoid Arthritis. I came to a new understanding of where I am in the scheme of things. Rheumatoid Arthritis (RA) can strike at any age from babies to the elderly. The elderly’s association with RA can be of long standing disease or it can be a new development. People who develop RA after age 60 are considered EORA. That is me. There are some notable differences with elderly onset RA. Initial symptoms may include large joints. With younger RA  onset small joints of the hands and the feet are usually first signs of joint involvement.  The shoulder joint may be a presenting joint in older onset.  My shoulder was involved initially as was the joints in my hands, wrists, feet, elbows. Initially I was in severe pain. Older adults may have more generalized symptoms. My grip was weak. I lost weight. I couldn’t sleep because of the severity …

Coping with the Symptoms of RA

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Beginning with the first symptoms of my rheumatoid arthritis (RA), I have lived in daily pain. It has been over four years. It has been a long time. Rheumatoid arthritis is an autoimmune disease. My body is on a suicide mission to destroy the linings of  the movable joints in my body. It is a scary disease in that it is unpredictable and it is progressive. I spent the first two years with severe fatigue/malaise. And it was as bad as the pain. This malaise is caused by cytokines, products of inflammation. Cytokines circulate in my bloodstream spreading RA damage. Add that to a high level of pain and it can be overwhelming. I wake to stiff, painful joints. In the morning as I walk painfully down to the kitchen to make coffee, there are times when I have become angry and tired of it all. I start the day in pain and I end the day in pain. It is too much. My feet are becoming deformed and I find it difficult to walk …

Knitting and RA

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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 of RA

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  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 10-13-16

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It is 5 am. Coffee perking. Cozy flames from the fireplace. Antoine, my 10 year old Maine Coon cat, fed. No sleep at all, not even a little dosing.  So I  finally decided to get up and start my day. I have RA. It is a bummer. Presently, I am on prednisone for a flare. I like the medrol packs which plus my regular prednisone help me feel better. But it is day four and the sleeplessness side effect has kicked in. It might last another day. I will eventually sleep. Most with the diagnosis of RA have a progressive form of the disease. I can say I have been in a constant flare for almost 4 years. That means my body has been continually inflamed for almost 4 years. Definitely not good for my body.  Sometimes are worse than other times. None of it is good. Mine started in my feet.  My toes, my feet, my ankles are reaching the point where I am worried about mobility. My knuckles can be bad as several of my fingers can. My right shoulder is worse than my left but the left is …

Remicade

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My treatment for rheumatoid arthritis, RA, is moving in the opposite direction of normal. Because I was diagnosed with two cancers and rheumatoid arthritis in the same year, the wonder drug biologics were off limits for me. They presented a higher cancer risk. Eventually as my RA worsened, quality of life became a factor. Methotrexate(MTX) injections help, but not enough. I had tried the triple treatment of MTX, Plaquenil and sulfasalazine without success. Leflunomide was next, but it didn’t work either. The small molecule DMARDs were exhausted as treatments.  The biologics were next. Rituxan was considered the safest both by my rheumatologist and by my oncologist. I was infused with Rituxan. It didn’t work. Next safest was Orencia. I was infused with Orencia. It helped. It helped about 50% which was the norm for it. I received monthly infusions. But my flares became much worse at 10-11 months. Orencia was stopped. Next is Remicade. Remicade, infliximab, was approved for RA in 1999. It is a TNF inhibitor. My rheumatologist had a serious discussion with me …

A celebration of Recovery 10,000Waves

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About as high as you can go up into the mountains in Santa Fe on the road to the Ski Basin is tucked a high-class Japanese Spa specializing in bodywork and skin care. Ten Thousand Waves.  My destination. Just what I need. I desperately need. My treatment choice is NOSE TO TOES. A Mother’s Day gift certificate from Chris and Katie. I live in Albuquerque and this would be my first road trip in three years. I gassed my Tin Lizzy, my 5-year-old Mini Cooper Clubman. Pepper white. Turbo. Added bottled water, spa directions.  Put on my winter jacket. Ready to go. Finally!  This is November. I headed toward I-25. Sunny day. Cool. I am on the road.  I am also on the recovering end of a devastating year. The year was 2013. Almost three years ago. I had been diagnosed with a severe rheumatoid arthritis followed by two different diagnoses of cancer. Surgery. Radiation for each. Pills forever. No relief for the RA until this year with the start of Orencia. It is a …