All posts tagged: Blogging 101

the joy of roses

Cancer Number Three and RA

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  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

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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

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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

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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 …

RA, Movement and the Slippery Slope

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I need to give you some heartfelt advice that is as close to a warning as I can get. My horrific experience this last year with a hip that was totally worn out put me in a dangerous situation that was as close as I had come to spiraling down the slippery slope to forever. I have rheumatoid arthritis. Those of us who have an autoimmune disorder understand what I mean when I say I have an overwhelming, incapacitating fatigue when I have a flare. Over the last five years I have learned to slow down when the flare signs start to blossom. To take care. So, this last year as the RA pain plus the pain in my hip increased, I did just that. I slowed down. Unfortunately, it wasn’t a flare that passed with additional Medrol and rest. It was a bone on bone raw joint pain that worsened with each passing day. I became debilitated. I was weak. I was living in pain. My doc provided OxyContin and tried very hard to …

RA flare warning signs

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Many of us who have RA have premonitions before the onset of a flare. For me, I start feeling chilled. Occasionally, I will check my temperature to see if I am coming down with something and my temperature will be 100.4 F. or maybe 99.6 F. It is a Rheumatoid Arthritis temperature. Additionally, my skin becomes itchy over joints. They are not always the same joints. Sometimes it is the knuckles and sometimes it is the wrists. I am also energetic and have several irons in the fire at the same time. As a flare draws nearer, I start losing my energy reserve. I feel like my battery is draining to a very low level. I knit more, and my baking becomes less creative. I feel duller. I would rather spend more time watching the Great British Bake Off and less time working on research for my current book. I am sinking. For me, it is time to start a Medrol dose pack and let myself slow down. I will still need to go to …

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 …

The Gut RA Connection

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By now  most of us know  that our intestinal system is home to trillions of  bacteria busy doing their job populating their ecosystem in the lining of out intestines. Collectively they are called the gut microbiome or gut flora. The beneficial bacteria in the gut have names that we see on the list of ingredients in a good yogurt such as  lactobacillus acidophilus. These bacteria help maintain a consistent environment, protect the body from foreign invaders, communicate with the immune system and the brain. The gut microbiome is complex and gut imbalances have been implicated in the development of RA as in other inflammatory diseases.  “Larger-than-normal populations of  specific gut bacteria may trigger the development of diseases like rheumatoid arthritis and possibly fuel disease progression in people genetically predisposed to this crippling and confounding condition,” according to Mayo Clinic Researchers. An imbalance in the gut microbiome coupled with a genetic predisposition to RA may be the initiating factor in the RA disease process. There is a lot of research being done. Using probiotics  medically as …

RA treatment in the 1920s

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In the early days of the twentieth century very little was known about rheumatoid arthritis.  It might have been called chronic infectious arthritis, proliferative arthritis or atrophic arthritis. Rheumatology was not a specialty. There were no rheumatologists. It was not a good time to have RA. Arthritis treatment at the Mayo Clinic  included bed rest. Patients were admitted to the hospital and put on bed rest for several weeks. They were given a balanced diet. Physical therapy was an important therapy. It improved range of motion, strengthened muscles and prevented deformities. Heat and massage were used  to improve circulation and to remove toxins. Bracing and casting were used to support joints and reduce contractions. Canes were prescribed. Shoe corrections were prescribed. Vaccine therapy, fever therapy and sympathectomy were popular treatments at the Mayo Clinic based on the theories of the time. As medical knowledge grew these therapies fell out of favor. Salicylates were drugs of choice. Remember this was before sulfa, penicillin and cortisone. It a was long time before ibuprofen would be formulated. Any …