Monday, January 16, 2012

RA treatment ramblings, Chinese Herbs & Rheumatologist divorced me

I've had so much on my mind this past week. I've wanted to write a book. I've needed to write a book. I wasn't able to sort my thoughts perfectly, so I didn't write at all. So instead of having my thoughts in perfect order, I'll just write, regardless of how it flows. Trying to be kinder to myself, is a learning process.

So I was diagnosed with RA, back in end of March 2011. Initially my rheumatologist (lets give her a name -
Dr. Pearls, she was wearing a pearl necklace last time I saw her) wasn't 100% sure it was RA, so she started the treatment very mildly with muscle relaxants. I was hopeful that her theory of me being able to sleep better quality sleep would get rid of the pains. I took a very conservative dose of muscle relaxant (one pill, not sure how many mg) every night for maybe a week. I wasn't feeling any better, any less pain, sleeping any better, but I was sleepier, more groggy & just not energetic enough to get through my days. I'm a mother of a busy 7 year old boy, who I call Bumble Bee, and with that comes responsibilities, and being groggy wasn't an option... Finally, I was on the phone with a friend and I was telling about a vision that just went through my head, a couple of them... and I realized I was hallucinating! So that was the end of my muscle relaxant days...

By my next appointment, Dr. Pearls had the results of my blood work. She got her confirmation, all the numbers proved I in fact have RA. That's when she told me, I need to get x-rays on my affected joints. She also let me choose, what medication I'd like to try first. She gave me the potential side effects and then let me pick out of two. I picked Azulfidine. She told me to build it up slowly to 8 pills a day. I thought to myself, 8 pills is like a meal on its own, how can anyone take 8 huge pills of anything a day, without feeling more sick? I started, feeling hopeful, and I barely got to 4 pills/day, and the gastrointestinal effects were unbearable. I stopped taking them before I was going for my next appointment. The appointment that would turn out to be my last one with her. She had the x-ray results (radiologists written report of his findings) and according to that
there were no changes in my joints. However, I had asked a copy of the x-rays & I had seen them, shared with my friends & my husband, who is a physical therapist. We all saw the changes! And they matched my pain & inflammation! They also matched the reduced space between joints! I couldn't believe A RADIOLOGIST had read my scans. I was convinced it was a 1st grader. Dr. Pearls told me, the report says, there's nothing wrong with your joints. Nothing. Wrong. "I've got the results right here." She was getting a little annoyed with me questioning the report. But I let it go. I had already decided to try a more holistic approach, with Chinese Herbs. So this is the time things got interesting...

I asked her, if she'd be supportive of me trying a more holistic approach. Acupuncture & Chinese Herbs. That's when she gave me her speech, borderline rant. "You have RA, the most degenerative kind, based on your blood work. There's no cure for RA. So no, I can't give you my blessing on trying a holistic approach. I can no longer be your rheumatologist. And I'm going to write in the notes: Patient will return when ready to receive antirheumatic treatment." I left the office, feeling like my doctor just divorced me.

If you read my previous post on my acute liver failure & Levaquin triggering my RA, you'll understand my hesitance to go heavy on RA treatment. On one hand, I understand the importance of treating RA aggressively early on. On the other hand, I'm paralyzed by the thought of starting the process of elimination with DMARD's or Biologics. I see the changes in my joints already, and some days I'm panicking. WHAT SHOULD I DO?

I'm currently taking Chinese Herbs for my RA. My herbalist is Dr. Zhang. He specializes in autoimmune diseases & liver disease. He has one herbal combination called AI#3, that works MAGIC! It helped me have a really active summer! I was able to run stairs, up and down! I functioned on close to normal level, I almost forgot I had RA! The bad news came in September... my period was a no show because of this herbal mix. AI#3 is so strong, it messes up with the hormones. Now, I don't mind not having periods... but the consequences of very irregular periods can be dangerous. So I had to stop that combo and that's where the downhill started... I stopped taking all the herbs. I think I had forgotten how disabling the RA pains & stiffness were. I suffered through September, October & November... by November, I had lost my will to live. I thought, if this is what my life is going to be like, day after day... it's not worth living.

Then one morning in end of November 2011, I was crying from pain & sheer lack of fight left in me... my son was looking at me, feeling helpless. He didn't know what to say, so he approached me and put his arms around me. His head was against my chest. Then he looked at me "Mommy, your heart is beating." He had amazement in his eyes. That's when I broke down and agreed, "yes, my heart IS BEATING!" That moment, I found my reason to live. My reason to not give up! I realized, I had been given life & by not fighting for it, I was spitting in God's face. Week after that I was back on the herbs. A little different mix, but I was doing SOMETHING & had found my will to live again.

I will write more about my experience with the new mix of herbs some other time. Having been diagnosed with RA, requires mental stamina from me like never before. I've been through a lot in my life, but being diagnosed with a chronic illness - I have to dig deep for a new level of strength.

Count the garden by the flowers, never by the leaves that fall. Count your life with smiles and not the tears that roll. ~ Author Unknown


  1. Hang in there Sari- you are a member of the warrior team--- you are not alone. Kim

    1. Thank you Kim! I'm so glad to have you in my world, to cheer me on :) I hope I am a positive force in your life as well :)

  2. I do the same thing Sari: so much on my mind I want to write a book about it - but it's so much I can't write.

    I'm enjoying reading what's going on in your life and your heart. One day at a time sweet friend.

    And boy when the professionals have a look at how they treat this disease, I don't know how they can sleep at night. Just so much confusion and ineptness - didn't they look at your xrays...?

    1. Thanks Kelly :) No, she never actually looked at the x-rays. She trusted whatever the radiologist had written. She didn't even have the report initially, she went to find it while I was waiting. I couldn't believe my ears. But having read other peoples struggles with their doctor's, I realize this is not that unusual. And that just makes me angry & sad. But with the help of my rheumie friends, I go forward :)

  3. Hi Sari, my last rheumy divorced me too when I asked to try a biologic but I found a better Dr and he listens to me. No one can't tell you what is the right path for you, all treatments have side effects even the natural path you are taking. Do not get so discouraged and if you do speak up and ask for help. All of us fighting this horrible disease get to that point at one time or another.