Saturday, July 6, 2013

The "bad card"

Dealing with the neverending stream of prescriptions and medication changes that come with chronic illness, and the often extreme side effects.  

I'll start on a positive note:  I am happily married, I have an unbelievably gorgeous and bright son, My husband and I are both successful and happily employed; we don't have to worry about money.  I'm told I'm "pretty" and am a size 2.  I have a beautiful home that backs to a forest with a sprawling deck, and I live in a great community, surrounded by family and friends.  I used to say "Nothing bad has ever happened to me".  My life was even-keeled and always going in a positive direction.  I knew it would change some day, and it did.  About 8 years ago, I was finally handed a "bad" card.  My health, both physical and mental, took a sheer nose-dive.

I have had anxiety since the age of 7, but it was manageable until I got sick, at which point it became debilitating as an adult.  Additionally, I never once had a suicidal thought until I could no longer get out of bed, or brush my teeth... or care for my son due to extreme pain and fatigue. I have suffered from severe depression off and on since becoming diagnosed with my hodge-podge of diseases. But, I've learned how to breathe, and was trained in Cognitive Behavior Therapy (CBT),  amazing and powerful tools that I can only wish I had access to as a scared child!  However, the more frustrating, and often painful, wrench in my life is my physical health:

I suffer from a variety of autoimmune diseases and Fibromyalgia, whose single purpose in existence seem to be to make the sufferer feel like 'crap'.  I have constant severe and constant pain, and debilitating fatigue.  To treat my physical problems, doctors have prescribed me, over the course of 7 years, at least 40 different medications.  Forty.  Different medications.  Currently, I am on a relatively stable list of 5 medication which are helping to control my symptoms, and my brain is relatively used to.  But it never lasts.  About every 3 months, one of my 6 trillion doctors either recommends a new medication, the cessation of an old one, or a dosage change.  In addition to my mental and physical problems, I was also blessed with extreme drug sensitivity.  Part of the reason I've tried so many medications is because I cannot tolerate most of them due to their unintended psychoactive effects, or other severe and crappy side effects.  Just to name a few of the most severe instances, I have become full-blown manic on at least 3 occasions thanks to immunosuppresant medications.  I have gotten serotonin syndrome at least 4 times (when my current drug cocktail interacts to increase serotonin to unsafe levels; serotonin is increased in a surprisingly huge list of drugs, not just SSRIs).  I have been unable to get out of bed due to sudden deep depressions.  I have been suicidal on multiple occasions,  and could list other similar but less extreme experiences.  Some of this is certainly normal given my history of anxiety and depression, but in the severe instances, each one is directly attributable to a recent medication change.

So, in order to prevent my premature death and other severe consequences of my physical health, I seem to be trapped on a medication-induced-crazy-coaster.  I want OFF!  But I am trapped.  Without my medications (which I've tried) I am bedridden and end up depressed anyway because of the pure suckage of being bedridden.  With them, I am a wild mix of emotions, mood swings and irritability.  Sometimes, I forget who I really am.  I take time every day to meditate and remind myself of my goals and beliefs- breathe.  think carefully before you speak (to avoid snapping), live in the moment, take it one day at a time.  But there's only so much my meagerly powered cognitive forces can do when up against a brain on a drug-fueled crazy spree.

I have to admit I'm getting a little desperate and hopeless, like I said, its been 7 years.  My physical health is just getting worse, and with the new symptoms come new drugs and more side effects..  I have decided that my goal for this year is to try homeopathic treatments; I am the newest guinea pig in an experimental (but highly researched) autoimmune treatment involving parasites.   I am also attempting to start a anti-inflammatory diet, which sucks because donuts is my favorite food group.  I am crossing my fingers that there are calmer, healthier, and happier waters ahead.  And believe me, so is my husband!

Six Months Later: Update!

Wow, looking back at this, I hardly recognize myself.  I kept my promises and have tried several drug free and experimental treatments for both depression (TMS or Transcranial Magnetic Stimulation), and parasitic  therapy for my Autoimmune disease.

The TMS was intense: it is for "difficult to treat" depression only, and I had to have treatments 5 days a week for 5 weeks, then 4 weeks of tapering.  My depression scores went from "severe" (like go to the hospital NOW) to "None".  NONE.  Its mind-boggling.  I am tapering off my anti-depressant medication, while at the same time experiencing a long-lost, beloved emotion called "Joy."  It is truly wonderful, and I highly recommed it to anyone who has had no luck with drugs (I had tried over 12 different drugs and several therapists with few results).  TMS is now covered by many insurance plans and is FDA approved for the treatment of depression and anxiety.  Google TMS depression for more information.

The parasite therapy is actually not as intense!  It is a relatively new, experimental treatment for autoimmune diseases (especially Crohns, Ulcerative Colitis and MS), and severe allergies.  However, it is well researched and most patients go into remission within 3 months.  I am still going through treatment, but I have already noticed some amazing results.  My allergies are gone; they used to be a nightmare.  I no longer need to take celebrex in order to move my joints without pain, and I am down to 1/2 of my original dose of immunosuppresant medication!  I am confident that I will also go into full remission.   Here is my most recent post on the therapy.

Along with the therapy, I have also begun an anti-inflammatory diet, attempting to be as gluten-free as possible, while eating as many veggies and fruits as I can.  I am not perfect; I still love donuts and pizza rolls on occasion, but on the days that I stick to my diet, there is a noticible shift in my levels of pain and (especially) fatigue.  I go by Dr. Weils food pyramid, which I found on Google. Its easy to read and helps me remember what to eat and what to avoid.  Also see my full blog post on the diet.

2014 is looking pretty damn good!  Check back for possible announcements from my husband and I.... yup! I feel well enough to try to have another baby.  Awesomeness!

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Got kids? Check out my new childrens book on Chronic Pain and Fibromyalgia!


  1. I hate the bad card! Thank you for your beautiful and honest post.
    (One day at a time...)

  2. Great post! Thanks you so much for the share. Keep up the Excellent work, we look forward to reading more from you in the future!
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