Monday, January 16, 2012

A second chance

Before I write about anything else, I need to give some background information. It helps you understand certain decisions I've made & how these things will keep affecting my decisions for years to come.

I've struggled with depression and anxiety in the past. But after I gave birth to my son, I actually had to go on medication to help me function. Thinking back, all I needed was a better support network. But where was I going to get it, from thin air? I had husbands' family, but in the end of the day, they were his family. They were not helping me with my newborn, since I was a stay at home mom. Stay at home moms are supermoms who never need help. At least that's what they thought. And as for husband's family... I would have to write a book to make any sense of that clan ;) And that book will have to wait, while I make friends with RA, the one I call my Evil Parent ;)

So in 2006 I started on antidepressants, Effexor XR. It was prescribed to me by my OB/GYN. I think it was helping, since I was on it for some time. However, I wanted to wean off of it, because of the potential side effects of being on it for a long time. I had read horror stories of people coming off of it. So I went to see a psychiatrist, who only prescribed medications, and didn't actually offer any kind of cognitive therapy. She prescribed Depakote, which is a mood stabilizer. Then we were slowly decreasing the dosage of Effexor. It was sometime in January of 2007, when I started to wean off of it, and just after mid March I started feeling sick. I didn't think anything of it. I just thought I was exhausted from recent developments in my life. (I had just had my church wedding in the beginning of March). At the same time I got an upper respiratory infection and my doctor put me on Z-pak antibiotic. The first dose was 1000mg, pretty strong! I got so sick, I could not get out of the bed, nor take care of my little 3 year old. I got out of bed long enough to put on a Sesame Street dvd and then went back to sleep. Just so fatigued, generally ill feeling. I can't even describe it in words. I had a constant cold sweat, and felt so weak! I took my 2nd dose of Z-pak, but by then I was starting to connect the dots. The Z-pak is making me ill! A few days later my husband told me "You look kind of yellow/orange."

That's when I must've looked in the mirror for the first time in how many days. And yes, I was orange! My eyes were orange! Not long after that we were headed to the ER... nobody knew what was going on, nobody knew what they should do with me! They did an abdominal scan & found that I have gallstones. But what failed to acknowledge (and take action on), were my liver enzyme levels! My liver was failing! They just told me to quit taking the antidepressants and mood stabilizers cold turkey! And then, get this - they told me TO GO HOME, AND COME BACK IN A FEW DAYS IF I DON'T GET BETTER. (!!!)

Not knowing what else to do, we went back home. But 2 days later I went to another Emergency Room & the same fiasco continued there. I was not given food, I was weak as it is, I was eating ice chips, since they didn't know if I needed a surgery of some kind. I was suffering from the withdrawal symptoms of quitting my medications cold turkey. I was put on the sidelines & nobody knew what to do with me. Yes, her liver enzymes are through the roof, but we don't know what to do with her. HELLOOOO!? Is there anybody here who actually went to school for this? I was too sick to know what was going on.

Then came an angel, Dr. B., my liver specialist! He put the whole ER in their place and I heard him raising his voice and saying "This is a healthy 30 y/o woman! Her liver is failing! You're not doing anything? Come on people, wake up!" So he took matters into his own hands & put me at ease, that he's going to take care of me. About an hour later, I was in a ambulance, transferred to Columbia Presbyterian Hospital. They have a whole floor for liver patients. That floor, I was told - people either don't come out of there alive, or they come out with a new liver. Initially my liver didn't seem to bounce back. Nations best liver specialists came to see me, interview me, asked details about my past alcohol drinking and Tylenol usage, trying to figure out why my liver was failing. Finally, my liver started responding to the meds! It was determined, that my acute liver failure was induced by Depakote & Effexor XR. Z-pak was not considered to be offensive to my liver. However, I believe my liver took a beating from the combination of drugs.

So long story short... my liver has bounced back completely, but from this horrific, near death experience, I developed an extreme fear of medications of all kind. And now that I have RA, treatment of it has to be conservative. Sadly all medications go through liver. Most of the RA medications are very strong & potentially messing with my liver. My next post will be about my journey with my first rheumatologist & the treatment of RA. ~ Thank you for reading this. It was hard to write.

NOTE: In addition to this - I'm in the process of writing a post about Levaquin triggering my RA. So in the future, when you hear me struggle with decisions about RA treatment. Keep these experiences in mind.

NOTE 2: There's also a class action lawsuit against the makers of Effexor XR. Because of the effects it has on the liver :( Just found out today.

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