All posts tagged: complications of Rheumatoid Arthritis

RA flares without the biologics

I am living through my days without methotrexate. I am not on any of the biologics. Hydroxychloroquine is no help and has been set aside. At first, I felt left alone in the world without armor.  Would a flare become so severe that I would spiral down and down into total pain and immobility as I had in 2013? That was my fear. For years, a low level of pain humming in the background has kept me company. I have a degenerating spine. There are long fancy words for what has attacked my spine. Plainly said, I have a bad back. I could say I inherited it  from my dad. I am accustomed to pain. Now I have RA. Over the years I have learned to ignore the humming pain. However, there is a tipping point after the start of a flare where something needs to be done. As a flare starts  pain grows louder in the small joints in my feet. The rest of my feet ache. My left ankle develops sharp pain making …

Seven year anniversary and infection

It was seven years ago this month. I was acutely ill with my first encounter of rheumatoid arthritis. My illness had not been given a name yet. A week before that I had seen the ER doc who started me on prednisone and who was  sending me to the rheumatologist that I would see in about another week. I had very little sleep. A few hours a night at most. I was in excruciating pain. Life was not good. I can look back with a sense of relief. I no longer have the kind of pain that made me think I had broken glass shards in my joints. It took several years after my diagnosis for my RA to settle down. I never went into remission. My inflammation has always simmered. Methotrexate was my base. I finally settled into 25 mg subq once a week. It helped. After a few years my pain was never quite the same as it was originally. My feet became central to my discomfort. Custom orthotics and Dr Comfort shoes …

Mary Man's RA Journal Icon

Disabling RA

One of the big pleasures I have is watching the full moon make its way up and over the mountain. I see it from my patio doors as I am making dinner. Lately, it not only is a big, full moon but also a beautiful, warm yellow. When I first see it, the moon  is just peering over the top edge of the mountain. Then it seems to sit on the edge of the mountain top just before continuing  its journey up into the night sky. A moment in time. I was thinking of good things to distract from the pain I have in my joints and the nagging fear in the back of my mind that I am becoming more disabled with each passing day. My RA was diagnosed seven years ago in January. Since then, I have had three cancers and a hip replacement. Most of that time I have been on methotrexate, mostly injectable. It has slowed the progress of the RA. It could be worse. I’ve been on almost all the …

Living with RA Disability

  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 …

Look Good Feel Better

There is one good thing about chemotherapy. It is the Look Good Feel Better program. Fun. A time to share. Like Christmas. It is a two-hour appointment with a cosmetologist in a small group of women who have cancer. I had participated in a program five years ago when I was in radiation treatment for breast cancer. That appointment was at MD Anderson on Indian School near Kaseman. This session was at the Rust Cancer Center and was equally as good as the one five years ago. We are each given a cosmetic bag full of cosmetics that matches our skin tones. The bags come sealed and ready for us. At our places we each have a mirror and cosmetic wipes. Opening the bag is like Christmas. My bag had Chanel powder, lipstick and blush. Clinique foundation, Estee Lauder face cream and eye makeup, IT brow powder and a set of brushes, body lotion and sun screen. Pure joy. Our instructor walks us through the steps of taking care of our face during cancer treatment. …

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 …

My RA and CA and me

If it weren’t for the third cancer hanging over my head, I would be a very happy soul. As it is I am just a happy soul. My roses are blooming. This is their big month and they are not disappointing.  Gardening and puttering through the various chores of my household reminds me of my housewife days. Good days. I aspire to the Hobbit life. Mellow and satisfying. Life in my home. I attend warm water pool classes at the Presbyterian Healthcare facility on Eubank. It is a long drive, but the classes are worth it. A comprehensive and aerobic workout that is manageable in the pool but not on land. Yesterday, I suddenly had a severe pain in my pelvic area that ran down the inside of my leg. Something new. Scared me. I thought about getting out but decided to lower my exercise level and see if it would pass. It did. I am no stranger to pain, back pain, joint pain and now this. Johnny Cash’s Peace in the Valley is sounding …