All posts filed under: RA Fundamentals

No more methotrexate

RA Dilemma Number Five There is another dilemma to face when you have rheumatoid arthritis. I was surprised by this one. After all, I have had RA for seven years and feel I have covered a lot of ground in that time. I know infection posed  a very high risk while taking RA meds. My mind thought flu or maybe pneumonia. This one started five months ago. Suddenly and out of the blue, my right breast developed a lesion and stated to drain. I felt feverish and went to see my oncologist who sent me to the breast surgeon oncologist down the hall because she was the one who had the ultrasound machine. She came in, introduced herself and looked at my lesion. She instantly knew that it was caused by necrotic breast tissue due to radiation for breast cancer. The radiated tissue gradually degenerates, expands until it pushes through the delicate breast skin and drains. It cultured positive and I was sent to the wound clinic. Eventually, it was determined that the only solution …

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 …

RA Fog

Last month I finally filled out the form for the Arthritis Foundation, made out my $20 check and mailed it in. A few days ago I received my first copy of Arthritis Today. I was surprised and impressed. It is a small magazine, not cluttered by pages of ads.  The focus of the magazine is to be helpful to those with arthritis. It is. There are interesting and helpful articles. I enjoyed the article about Clark Middleton. He was the DMV guy on the series the Blacklist. Funny character. He had juvenile idiopathic arthritis as a child. He had many joint replacements and continues today with methotrexate and a biologic. His is the story of a man who has accomplished a lot while coping with a debilitating disease. The article on Brain Fog reminded me of methotrexate fog. That was a hurdle for me as I settled into methotrexate treatment. I was a sharp business woman. I had to be in order to stay in business for over 25 years. I had always done my own …

Coping with the Symptoms of RA

  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 …

Time for a visit to Ruth: Orencia is done

    Have you ever felt so depleted, that there is almost nothing left?  Are you surrounded by people who are caring but don’t seem to care? Are you so ready to call it quits? But can’t because the house needs to be cleaned first. Damn. Days can be tough. I have rheumatoid arthritis. My Orencia no longer works. And after I had a very bad flu sandwiched by two very bad flares, it was cancelled.  It is advertised as being a wonder drug, but in reality the very best it can do is help 50% of patients, 50% of the time. From a business standpoint a drug that costs $3500 a month should do more than 50% for 50%. That is what it did for me. 50% and I was a lucky one. Before that, I suffered with severe symptoms most of the time. 50% is a big help when that is the case. So now I am back to the beginning with 0 %. Square one, I am back. So today I am …

RA and Malnutrition

A COMMON BUT LITTLE KNOWN complication of RA is malnutrition.  In fact, it is estimated that more than 40% of Rheumatoid Arthritis patients are malnourished. My first thought would be that RA can cause such overwhelming fatigue and pain that it would be difficult to muster the energy to prepare and then eat a meal. Just to make a sandwich requires unwrapping the bread, putting the slices on a plate, wrapping the bread bag back up, opening containers and adding spreads, meat or veggies, closing containers, putting them away. Sitting down at the table with your sandwich and eating it. Sounds easy enough. But if you are so wiped out by the extreme fatigue of RA or your hands are swollen and ache deeply in a way that is hard to explain, making a sandwich can be an overwhelming task. It is a task that can be skipped. And it frequently is. Additionally, it is difficult to rally the energy to go to the grocery store, get out of the car, walk in,  select items, …

Living with and Beyond Cancer

                    Come and be supported. This will be the best conference ever. You can register on the cancer support now web site.  I am on the board of this organization and also on the committee for this conference. I became involved with it after completing radiation therapy for breast cancer and for thyroid cancer. It is a port in the storm for cancer survivors. I will be at the registration table. Come say hello.

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 …

RA and cancer support

Cancer and RA seem to go hand in hand. Shortly after I was diagnosed with RA,  I was diagnosed with two different cancers, thyroid cancer and then breast cancer.  I had the big C hanging over me like a grey cloud, leading me down the cancer road with all the usual experiences.  After surgeries and after radiation treatments, I started looking for help, for support. I found it with the Cancer Support Now Third Annual Long Term Effects of Cancer Survivorship Conference.  A long name worth repeating as I became totally impressed with this organization. Dava Gerard, MD, a respected physician in the cancer field, gave the talk ¨The Journey: From Surviving to Thriving¨.  It was just what I needed.  Arti Prasad, MD presented ¨Holistic Cancer Survivorship¨.  Again excellent. There were breakout sessions. Free lunch from Jason’s Deli. The morning had started with a generous breakfast. I felt welcomed and very glad to be there. Since then, I have joined the board of Cancer Support Now and am on the committee for this year’s conference. Both are big commitments …

Susan

I said goodby to Susan today.  She has  had a very interesting time of it.  Her life was full.  No one can ask for more.  I knew her for a brief period.  I was glad of it.  It was an important period in her life as well as in mine. I met her at a cancer support group.  She was angry as she had recently learned of a serious metastasis.  I had had a whirlwind bout  with a diagnosis of RA and sequentially two cancers.  I was trying to process as well as she. I saw her as the chemo failed and as she was denied her favorites of swimming and yoga.  I saw her as the last chemo drug failed.  She lost her anger and frustration.  She seemed to mellow.  Then she moved on.  She became engaged in planning her exit. The last day in our breast cancer group, we made bracelets.  She gave me her’s.  She used red beads as I was wearing red that day.  We had our final hug. She has …