heartsongs

Weaving my way around Rheumatoid Arthritis.

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Joint Report

Joints about the same, maybe at a 1 – 1.5 today. The normal stiffness when I sat during the day. I was really tired when I walked back to my car after work. Had a nap when I got home, then a cup of coffee to combat the headache. Difficult to believe that my one weekly cup of coffee on Sunday gives me a headache on Monday, but it’s happened two weeks in a row. Guess that ritual may have to go, too. I was hoping that I could be caffeine free 6 days, and have my one-cup on Sunday, but it’s not working so far.

One Year and Counting

It’s been one year since my official diagnosis. One year ago, today, I was setting off for a 3-day mountain retreat with my gal friends, and stopped by the Rheumatologist office to get the last set of lab reports, the MRI results  & the “official” word on our way out-of-town.  The diagnosis: very early stage, mild Rheumatoid Arthritis. Although I had done lots of research and was not surprised at the diagnosis; it was still difficult to get the official diagnosis. It was great to be surrounded by a supportive network of my best friends those  first three days, and have my life filled with fun distracting activity.

Although May 23, 2011 is the OFFICIAL day of my diagnosis, in my mind the real question is… when did the RA REALLY start?

When I look back at my journal, I see that the extreme fatigue was so bad in 1997 that I took a whole month off from work to sleep. I also hired my housemate to do the housework, laundry, cooking and dishes, so that all I had to do was work and be a mom to my two teenage girls, and son. That’s when I started watching television for the first time in my life – because I was too tired to do anything else. When I complained of fatigue, the MD passed it off as perimenopause. Was that the start of RA?

In 1998, I returned to the corporate world after closing my massage practice because I had injured both thumbs. Was that the start of RA?

Another year passed, and I was still so very tired I was barely functioning. That was the year my eldest daughter voiced concern, thinking I was depressed, because I wasn’t keeping the house clean and was always resting (housemate got engaged and moved away). I kept telling my daughter I was not depressed, just tired – which I was. ALL THE TIME. Was that the start of RA?

1999 I took an entire year off work. I moved out of our big house and into a tiny apartment. Officially, I was selling Real Estate, but most days I spent the day reading and resting. Both my girls were in college, my son was working in Indiana, and all I had the energy to do was sit on my bed, nap, rest, listen to music, rest and read. Was that the start of RA?

2000 to 2004 – four years of barely coping. I withdrew from all my social activities, because I was too tired to do anything but go to work and keep myself cared for. I told my friends that I could only make plans if they were ok with my cancelling at the last-minute, if I was too tired. Again, doctors blamed extreme fatigue  on perimenopause. Was the extreme fatigue the start of RA?

December, 2004 I was complaining of fatigue in my back that was so bad I couldn’t clean up the kitchen after dinner. I couldn’t sit through a movie. I bought a new bed, thinking that would help my back, help me sleep better. A colleague suggested the sleep clinic. After an overnight sleep study, I was diagnosed with Hypothyroidism, iron deficient anemia, restless leg syndrome and mild sleep apnea. The nurse who had done IV iron transfusions for 30 years said I had the lowest ferritin score she had ever seen. It was lower than her hospitalized cancer patients. She didn’t understand how I was walking around. I had 3 IV infusions over the next year, and started Levothyroxine for my Thyroid.  I felt better, but I was still tired all the time. Was that the start of RA?

In 2005, I bought a house in the country, where it was dark and quiet, hoping that would help me sleep more soundly. My weight had been stable at 118-120 throughout adult hood, even with 3 pregnancies. In the mid 1990s, I started to gain weight, some years 5 pounds, some years 3, the MDs blamed it on perimenopause. No matter what I did, I couldn’t lose the weight. Dieting did nothing. Mild exercise made me so tired that I could barely get out of bed the next day. By 2005, I had gained 25 pounds. Was the weight gain the start of RA?

In December 2004, February 2005 and again in March 2005, I had spontaneous floaters in my right eye.  Hundreds of floaters: dots and doughnuts and targets and rings, on several different planes. They were so bad; I sometimes spontaneously “ducked” as they came flying across my line of vision. The Retina doc said it was the largest floaters she had ever seen (What she actually said was: “Usually when patients say they have a large amount of floaters, we can’t even see them, but yours are HUGE” – how reassuring). Then my retina tore and I had emergency retina surgery, which was successful in saving my vision – although the road to recovery was long. The doc blamed it all on “dry eyes”. Was this the start of RA?

In October 2005, I was laid off from my job. I spent 9 months, gardening, hiking and sleeping – when I needed to be  job hunting. I started a new job in August 2006, after my 9-month vacation. I felt better than I had in a long, long time. For my new job, I wore heels every day, something I’d never wanted or needed to do. Skip forward 9 months, I woke one day and found I had exquisite pain in the balls of both feet – plantar fasciitis. I had to buy cushy soled sandals and wear them every day. Was the end of pretty shoes the start of RA?

Sometime in 2008, a friend started the Paleo diet and went gluten-free. I found that when I spent a few days with my friend, eating exactly as he ate, I would feel better and lose a pound or two, only to gain it back as soon as I started eating my normal diet again (meat, beans, dairy, fruit, vegetables, whole grains, a very healthy diet, with no junk food). I started playing around with food. Eating Paleo Tuesday through Sunday, I would lose a pound or two or three, then on Monday night I had a girls night potluck, and I would carefully fill my plate with the same amount of food as my thin friends, and I would gain 2 or 3 pounds overnight. I did this repeatedly for the remainder of 2008 and all of 2009. Yes – I’m a slow learner.

Between Thanksgiving and New Years 2009, I went back to my traditional foods. Not over indulging, but eating normal amounts of whatever I wanted. I was very conscious of “portion control” and watched closely to see how much food the skinny people around me were eating. I gained 20 pounds! That was a turning point. I immediately had tests for celiac disease and went gluten-free. My test results came back positive on St. Patrick’s Day, 2010. I have been gluten-free ever since. This is a long story, which I will have to write some time, but many, many symptoms have disappeared since going gluten-free. I believe I have had symptoms of Celiac Disease since at least age 5. Was the Celiac Disease the start of RA?

Although I can’t put a date on them, throughout my journals over the past 15 years, there has been a recurring theme of brain fog, general lack of joy and enthusiasm, feelings of despair and low libido.  I stopped dating, I stopped my hobbies, I stopped socializing with friends, I only worked and cared for my children. My life became very narrow. This was uncharacteristic of me. I spent a lot of time over those years seeking, using spiritual tools, motivational tools, organizational tools, and therapy. Nothing seemed to help. Were these emotional/mental issues also the start of RA?

Two days after my 60th birthday, June 2009 I woke in the middle of the night with a shooting pain in my left wrist. I was able to get into the orthopedic clinic that morning, they diagnosed DeQuervain’s Tendonitis. When asked about my pain – the famous 1-10, with 10 being the worse pain you’ve ever experienced – I had to admit this was a 20. I could not use my left hand at all. Just the weight of a piece of paper placed on my open palm caused shooting pain. In order to sleep, I had to splint my hand and immobilize it between two sleep pillows (which formed a hollow tunnel to protect my wrist). I had to hold it across my chest when I walked, because swinging my arm as I walked sent shooting pains through my wrist. The weight of a sleeve brushing against my wrist or accidentally brushing my hand against something caused shooting pain. I learned the true meaning of mindfulness – I had to consciously change every little motion to avoid any physical contact with my left wrist or hand.

During that year, my right wrist was also showing signs of DeQuervain’s Tendonitis. The pain in my right wrist was at about a 3, compared to my left wrist’s 20. Both wrists, hands, arms were also very swollen. I had a burning sensation (burning as in lava flow) under my skin on both forearms, and sometimes both arms would be cold to the touch. The lymph nodes under my left arm were swollen, red and sore to the touch. I asked all the practitioners I saw that year about all these symptoms, but none of them had any ideas, and they all just focused on the “problem” of my left wrist, which they believed I had “injured” somehow. I thought it was strange that I would have the same pain in my right wrist, if I had “injured” my left wrist – but none of the medical folks wanted to address my concern. Eventually, I asked my nurse practitioner to send me to an oncologist, because of the intense burning and swelling in the lymph glands under my left arm. I had a mammogram, ultra sound, a manual exam, and a glowing report –  my lymph glands were beautiful. They didn’t know why they were swollen,  it was not cancer, and come back next year. They didn’t have any ideas of who I could see to find out what WAS wrong, and didn’t seem concerned, as they were able to rule out cancer.

After 4 months of aggressive treatment (chiropractor, hand clinic for splints, physical therapist), the pain got below a 20, and my wrist actually started to heal. For almost a year, I wore a splint; I saw a chiropractor 1 -2 times a week for several months; I saw a Physical Therapist 1-2 times a week for several months; I saw an MD who specialize in chronic pain once a week for several months. I did nothing but go to work, feed myself and do the laundry. I made 15 jigsaw puzzles – using only my right hand, read 30 novels using a bookstand to hold the book, and started watching television again – the only way to stay out of pain was to sit very still, protecting my left hand and arm. I was bored to tears, and exhausted from the pain. All the therapies helped. My wrist got gradually better; I slowly regained the use of my left hand. After 7 months, I stopped all therapy, as I wasn’t seeing any additional improvement. I continued to coddle my wrist and it continued to heal. I was back to doing most things I had done previously, only very carefully, and with only occasional little “tweaks” of pain to remind me that things were not what they should be. I still had the swelling, the cold skin, the burning lava flow, and red, tender, swollen lymph glands. None of that had changed at all; but the exquisite pain was at a manageable 1 or 2. Was the DeQuervain’s the start of RA?

In early May 2010 I picked up my backpack with my left hand, it slipped, my wrist twisted, and I saw stars and sank to my knees – like in a cartoon. I was right back where I had been in June 2009.

A friend told me of a physical therapist she had seen recently. He used to teach diagnostics at a large, local, well-known medical university, and also was the head of Physical Therapy for all the university’s sports teams for many years. Now retired, he did PT one day a week. I made an appointment, and he spent over an hour with me; he did a very through physical exam and health history. He was the first medical practitioner who was interested in the fact that I had swollen lymph glands, burning lava flows, icy cold skin, swelling and symptoms in both wrists. He asked me about all my other joints, and examined my feet, ankles, knees, hands, wrists, elbows, and shoulders. Then he told me he needed an MRI to be sure of what was going on in my wrist, he couldn’t order the MRI, so he referred me to his colleague. He told me that physical therapy would NOT help my wrist, that there was something else going on and we needed to figure out what it was, and he sent me to his colleague who was a Rheumatologist.

I made an appointment with the Rheumatologist, and spent the ensuing 5 days doing research. With all the online information, it was pretty easy to determine that I was probably looking at Rheumatoid Arthritis. I also was able to go to the on site clinic at work and get my nurse practitioner to order blood work. With 24-hour turn around from their lab, I was able to walk into the Rheumatologists’ office with blood work and a good idea of what she was going to tell me. I really like the Rheumatologist. She spent over an hour on her exam and health history. (It also turned out that we had met before when she purchased a piece of my artwork at a local show.) She had some of the blood work repeated and some additional blood work done at her lab. I saw her again a week later, where she repeated the physical exam, and diagnosed Rheumatoid Arthritis in my feet, ankles, knees, hips, hands, wrists, neck and sacroiliac. Was this the start of RA?

May 23, 2010 is the official diagnosis, but I think the Rheumatoid Arthritis is just one part of the autoimmune cascade that has been occurring in my life since early childhood.

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Written by wovensongs

May 23, 2011 at 7:36 pm

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