All posts filed under: RA journal

Finally, a life

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I really thought I was going to die last year.  To prepare, I filled out the final wishes form.  Next, I made an attempt to simplify my financial records. I said thank you to all the people who have been helping me the last few years. I had a garage sale. What the heck, I thought, I would be the one to get the money if I had one before I died. Just as I thought things were going to get worse, they were already terrible, I started coming out of the methotrexate fog.  I could think clearly again.  O happy days.  At least I had my mind.  Both cancers could return.  My RA could leave me immobilized.  Yet, I would be able to read.  My favorite thing to do.  Preston and Child’s Pendergast series. Baldacci’s adventures. All the fascinating medical books. I could be happy. The methotrexate injections, Plaquenil, leflunomide and the prednisone finally calmed the ever-present inflammation in my body.  This was after 2 years.  And it may not last long, but it is …

How an RA Book Helped

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When I was diagnosed with RA, I was too sick to understand the long term implications. I was grateful at the time to put a label on the devastating attack on my body. I love books and have always looked to books for solutions as well as for pleasure. Soon after my diagnosis, I purchased the book, The First Year Rheumatoid Arthritis by M.E.A. McNeil. With RA there is a major shift in your life. What to do? How to cope? What to think? It is overwhelming. This book set me on the right course. It helped me organize. The most important thing it did for me was define my attitude toward RA. I developed my medical team. I understood I was the manager. I started journaling daily and also logging in my symptoms. I researched the drugs I was on and created files for them. I researched lab tests and understood what they meant and kept a log. I asked my doctors questions and received solid answers. I knew the first few years were critical. I knew …

RA Drugs-Methotrexate

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I take my 10 little pills of methotrexate on Sunday afternoon.  I put the ten 2.5 mg tablets in a little white bowl.  I take them over a 4-5 hour period.  My little ritual makes a major difference.  I have no nausea from the medication. My first dose was 2/17/2013.  It was 10 mg.  My dose was increased gradually to 25 mg on 4/28/2013.  Nausea is the most common side effect.  I did have some initially  but as long as I followed my ritual,  I was fine.  Additionally,  for the first year I was  tired on the day following the dose. Low dose methotrexate has been the drug of choice for the treatment of Rheumatoid Arthritis for 30 years.  It is safe and generally well tolerated.   It is a DMARD, disease-modifying anti-rheumatic drug.  It helps with pain and swelling.  It slows the progression of RA over time. Methotrexate was one of the first products of ” intelligent drug design”.  It was introduced as a treatment for cancer in the 40’s.  It was introduced to treat …

Yep, RA is progressive

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During the treatments for my cancers, my RA was uneventful.  Yes, I did have monthly flares that lasted just about 12 days.  Yes, I was always in a simmering level of pain.  I grinned and bore it like a good Irish Catholic girl.  Instead, I focused on surgery, radiation and life changing drugs.  I even completed a cancer rehab program. One day as I was starting a Zumba class, my ankles screamed in a pain that was the equivalent of trying to dance on joints full of shattered glass. Determined, I tried moving my feet differently (how many ways can you move your feet, you might ask).  After 10 seconds, I realized that it was futile.   I stopped.   Since then, it has been downhill.  It was a steep hill, I might add. Although I am on Methotrexate (a life saver for me), Plaquenil, (Sulfasalazine did not work for me), meloxicam, prednisone and all the supporting drugs, I am still progressing.  All the little joints in my feet and my ankles are inflamed and …

Rheumatoid Arthritis a training ground for cancer

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Rheumatoid Arthritis: A training ground for cancer. That is how I think of it. When I was diagnosed last year with RA, I read everything I could find on the subject. I was trying to figure out where I stood with the disease. My favorite book was M.E.McNeil’s The First Year Rheumatoid Arthritis. The value of this book is that it offers an approach, a way of thinking, to come to terms with a chronic, progressive disease. It gave me the same help when I had to come to terms with the diagnosis of two different cancers. • I journal regularly, expressing myself and establishing a timeline. • I think of my medical providers as my team that does include my pharmacist, physical therapist as well as the 6 specialists that I am seeing currently. • I see myself as the head of my team. I have confidence in my team. Each has a role. My role is to be proactive, to do my part. • I am able to accept my current situation, relaxing …

How to tell a charlatan

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I met my first  charlatan last week. I’m sure I’ve known other ones.  A charlatan presents as someone who is an authority on a subject when in fact she’s not. She often times is looking to profit from her faulty information, but not always. This woman approached me at a cancer class. She said my cancer was caused by an imbalance in my body. She could cure me. Doctors were clueless. Nurses were clueless, too. I really needed to go to her program and learn about the acid-alkaline diet. ( A friend had already given me a book on the subject.) I would be better. I would feel better. She didn’t have a card and mentioned she did a lot of other things. She wrote her info on the back of one of her other cards. Contact me, she said. To me the fundamental  sign of a charlatan is her attitude that she know best and that all the other resources in the world are bogus. There are too many good resources in the world. …

breast cancer was next

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Where have I been all this time? November 5th I had a follow up CT scan and between April and November, I developed breast cancer. There was a quick response in the medical community to this development. The next Monday I had a mammogram, an ultrasound and a biopsy all in one day. By Wednesday I was diagnosed with invasive breast cancer. The next Monday I met with the surgeon. Then on Tuesday I had a MRI and met with the medical oncologist and then on Thursday I met with the radiology oncologist. Busy! November 25th I had surgery. I had a lumpectomy to be followed by radiation(statistically same results as a mastectomy).  A sentinel node biopsy had no additional cancer cells. However, up to 30% of those with negative nodes already have micro metastasis. My cancer biomarkers:  estrogen positive, progesterone negative, Her-2/neu negative.  Next is the oncotype breast test. It took a month for them to finally tell me my cancer samples were damaged and they were unable to perform the test. Next stop …

An RA life is doable: First year.

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This has been a roller coaster year for me. I was lucky in some ways with a sudden and severe onset. There was no question about my diagnosis. I searched and searched the internet looking for clues to my future. My RA is a bad case. I have no remission. All the little joints in my feet and in my hands have been swollen for 9 months. Now I wake up daily to the surprise of what joints will be more swollen and demanding attention that morning.  I like to start the day by getting all my little guys moving.  My joints love me for it. I feel better sooner. I make my coffee. Love freshly ground French roast beans. It is worth getting up just to have a cup. I feed Emma and Jimmy. Heat my heating pad in the micro. Take my first pill of the day after a blood sugar check. Settle into a warm back, hot coffee and my journal. Multitasking in a happy way. After the leisurely coffee ritual, a …