All posts tagged: Blogging 101

Surviving Covid-19 with RA

Those with rheumatoid arthritis are more likely to become ill with covid-19 and they are more likely to be hospitalized or die. In addition, if you are on an immune suppressing biologic your  covid-19 vaccine will only be about 65% effective as opposed to the 95% coverage most people enjoy. The reason that a third vaccine will soon be available to those who are immune compromised is because those hospitalized with breakthrough infections are from the immune compromised group. This is not a booster shot. It is a third vaccine. Those with RA who are on an immune suppressing biologic will be eligible. Although those who had RA were included in the vaccine studies, those with RA who were on biologics were disqualified from participating.  So, there was no data on the effect of immune suppressing drugs such as the biologics on the effect of the vaccine. The vaccine is safe for those with RA. Protection from the virus is limited for those on the biologics. It has been found  that those with RA who …

Mary Mann inflammatory arhtritis

Meet Ankylosing Spondylitis (AS)

Spondylo means vertebrae or bones in your back. So, you can see that AS affects the spine. With the progression of disease, the vertebral joints fuse causing the spine to be stiff. AS affects the  areas where the joint capsules, tendons and ligaments attach to the bones. Pain and swelling occur  along these “hotspots”. The lower back, the sacroiliac joints,  the cervical spine, pelvic bones, the rib joints and the heel. Classic AS involvement. Many other joints can be involved. The joints of the hip, shoulder, and knee are commonly involved. Involvement of fingers, toes, wrists and jaw, although possible, is not common. It is a disease of younger people (teen-40s) usually. It is common in men, but science is learning that women have AS frequently, too. It is a major cause of low back pain. It is an inherited disease. There are many genes involve. The gene HLA-B27 is present in 90% of those who have AS. As in many cases an environmental trigger like an infection activates the genes involved. AS belongs to …

Silica is a risk factor for rheumatoid arthritis

Silica, the earth’s most abundant mineral, is made up of oxygen and silicon. It is a part of many, many processes including mining, pottery making, glass making, and granite work including tombstone making. The lung disease caused by crystalline silica dust is called silicosis and has been known since the time of Hippocrates. It is an inflammatory disease. In the fifties after many studies, it was learned that autoimmune diseases including rheumatoid arthritis could be caused by exposure to crystalline silica. The connection though proven is not well understood. Rheumatoid arthritis is also an inflammatory disease. This morning I was reading one of the comments on the forum Health Unlocked. It was written by a woman who has RA as does her brother. Interestingly, both had jobs where they worked with silica.

Living with RA

  Rheumatoid arthritis (RA) is considered a chronic disease. A characteristic of chronic disease is its disabling features. Walking may become more difficult. Activities like dressing, preparing meals, performing personal hygiene and completing household chores become harder and harder. Life becomes increasingly challenging until a person hits a crossroad where they make changes in his or her life or gradually slips down the slippery slope into a dependence that requires custodial care and no turning back.  RA is known for making life challenging in many ways. Like cancer, diabetes or all the other autoimmune diseases, being able to live with RA starts by making changes to our lifestyle. Pain management is a big concern for those with RA. There is no going around the fact that pain is a common feature of every day RA life. There has been much written on managing pain. Managing pain is possible with the help of professionals skilled in pain management. The topic requires its own space although these suggestions will help lease the burden of that pain. For …

How my hair came to fall out, more experiences with cancer treatment

I remember when I learned about my latest cancer (#3).I knew that once again my life would be consumed by all things cancer. After major comprehensive surgery (they took almost everything out), it was time to settle into chemotherapy. My oncologist, Sara Jordan, had explained the reasoning behind the treatment she proposed. Chemotherapy would be part two after surgery and before vaginal radiation. I figured she might be able to cure me which sounded appealing and worth the effort I would be expending. This picture shows my hair, but it was taken after surgery and before chemo. The chemo was to be a commonly used combination of Taxol and Carboplatin. Six sessions in 21-day cycles. Hair loss is definite and is estimated to be 2-3 weeks after initial infusion. This allows a little planning time. My hair stylist, Audrey, cut my hair into a short pixie. Much better than a butch or a clean shave. The second part of the plan was to shave it when it started falling out. About day 19 after the …

the joy of roses

Cancer Number Three and RA

  It is almost a month since I had a robotic radical hysterectomy and it has been four days since I had my first chemo. I feel pretty good all things considered. Additionally, a minor surgical procedure placed a power injectable SMART PORT under my skin connected to a catheter that was threaded into my jugular vein and down to my superior vena cava creating fast access to my body’s circulation.  It is not as bad as it sounds. Sloan Kettering has a PDF that explains the procedure. My skin has been tender, but the lidocaine ointment works and relieves the discomfort. My RA is complaining with all joints hurting morning and again evening time. Walking hurts my feet even though I have custom shoes and custom triple layer inserts.  I am glad I take methotrexate injections, Plaquenil and meloxicam. I take 6 mg Medrol and can boost the dose into a dose pack if needed. So far, I am holding steady. With RA I think it is important to move. Aerobics are nice but …

Cancer Surgery Number Three

My surgery is over, and after an overnight hospital stay I am safely home. The doctor took many things out of me and she biopsied the rest. My doctor is a GYN oncologist surgeon, Sara Jordan. She is amazing and couldn’t be better. She feels that my serous uterine cancer, a rare subset of endometrial cancer and known for recurring, needs to be treated aggressively. I completed the first step, surgery. Prepping for the surgery was a challenge. I was required to spend Mother’s Day on a clear liquid diet. Then on Monday I was reduced to NPO status even though surgery wasn’t until one pm. I was running on empty so when I approached my preop, well-padded bed, I was relieved to get in. Stripped down like a hijacked car, clothed in the traditional blue gown, IV successfully inserted, I was ready for surgery. OR nurse stopped in. Anesthesiologist checked in. Dr Jordan reviewed the surgery again and introduced me to the second surgeon. Time seemed to accelerate. It was five minutes past one …

RA and the Bread Machine

In December I had the urge to make bread. It was the same urge that I had several years ago to start knitting. I knitted everyone a beanie, or a wrap or a special heart to say I cared.  I am still knitting. I am working on a blanket project that is over half done, a wrap for my Watertown, NY sister-in-law and a fluffy, bright red beanie for a friend. Now I am adding breadmaking to my list of activities. I researched bread machines on the internet. Found the one I liked, a two-pound Oster and added it to my wish list. Eventually, Amazon made me an offer that I couldn’t refuse. In December during my hip replacement recovery, I became the happy owner of an Oster bread machine. The bread is made in loaf form, has nine plus settings and produces perfect bread mostly by itself in a little over three hours. Along with the machine, I ordered The Bread Machine Cookbook by Donna Rathmell German. It was her first book and I …

I thought I was going bald, it was just the MTX

About six weeks ago, I started noticing my hair thinning. I thought it was odd because my dad had thick hair in his older years. I expected my hair would do the same. My hairdresser also noticed the thinning. It was real. Next, I started noticing bunches of hair on my comb. “My hair is falling out,” I thought. Right again. I quickly realized that it was the methotrexate (MTX). Hair loss only occurs in 1-3% of those on MTX. I have been on it for five years and the last three years I have been giving myself 25mg injections. It works for me. I am also on hydroxychloroquine (Plaquenil). Plaquenil can also cause hair loss. I started taking MTX every eight days instead of every seven. Every nine days starts an RA flare. I stick with the eight days. I also cut the Plaquenil to 200 mg daily from 400 mg daily. My hair is no longer falling out. However, my hair hasn’t grown since my last haircut. Unfortunately, it was the second worst …