About Me

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I was recently diagnosed with Distal RTA & Sjogren's Syndrome, which has been a spiritual wake up call for me. I decided to create a blog to empower myself, educate my family & friends and create support for others. I live in Central Florida with my partner, my 10-year old son, an epileptic pug and a rescued cat. I am mecurial, sensitve, passionate and intense.

Wednesday, December 21, 2011

The Road Leading to Sjogren's

They say on average it can take 6 years to be diagnosed with Sjogren's Syndrome.  For me it was longer. I believe it all started in 2003 when I was hospitalized with septic shock.  The doctor's were fascinated with my case because there was no medical reason they could find for this to have happened to me.  It was very sudden, with me being admitted with dangerously low blood pressure at 27/13, severe dehydration and a subtle, slow heartbeat.  The day before I had seen my family doctor complaining of a sore throat, fever and body aches.  They told me I had bronchitis, which I thought was odd since I had no cough, and gave me antibiotics.  I went home to rest and woke the next morning having a hard time thinking clearly and burning up with a high fever. I was later told I was so badly dehydrated that I had started to become delirious.  Although it was a terribly frightening experience for my mother, I was so out of it that most of what I am writing here comes from her account, not my own.  I do remember being given dopamine twice to increase my heart rate.  And I remember waking up the next day, September 11, in the ICU with the infectious disease doctor telling me that I had almost died. He said my overall health and youth was what saved me.  That and 5 of the world's strongest known antibiotics.

Life went on but I was never quite the same health wise and I seemed to get sick quite often.  My family doctor thought my immune system might be compromised and sent me to many specialists over the years.  No one found anything.  Yet I continued to have odd, some times short-lived, health issues.  Swollen glands that lasted for 2 days and never returned.  Sudden acid reflux so painful I went to the ER. A tremendous drop in my thyroid levels that prompted a trip to an endocrinologist who increased my synthroid (I'd been diagnosed with hypothyroidism in 1997) by almost 100 mg. Small cuts and scrapes that wouldn't heal quickly and left scares.  Unknown and untreatable rashes on my face, neck and scalp.  Swollen, painful fingers.  Carpel tunnel in both wrists.  White blood cell count so low that I was sent to a hematologist oncologist; she diagnosed me with severe anemia and an iron deficiency, requiring me to take a prescription-strength prenatal vitamin daily and receive monthly B12 shots.  Skin infections that turned into staph infections; twice tested for MRSA, both times with negative results.  Tingly, pins-and-needles-type feelings in my hands and feet, eventually turning to numbness and increasingly painful icy-cold burning sensations.  Increased then decreased sweating. Bouts of dizziness and feelings of being light headed, occasionally resulting in my passing out or falling down.  Hospitalized yet again, this time for severely low potassium levels that left me temporarily paralyzed and in the ER (again) getting a spinal tap.  More specialists who discover that my body is not retaining potassium, regardless of the 8 potassium pills I take each day. My eyes began getting blurry and dry causing difficulties reading.  Teeth, that although I brushed often, began to crack, break and even decay.  A wicked dry mouth that I'd been living with so long I didn't even realize it.  Then this past summer I began having terrible pain in my left leg that I thought was my sciatica acting up (I'd had problems with it ever since I was 8 months pregnant and my son was pressing down on the sciatic nerve).  But despite the usual tricks it didn't get any better, in fact, it got worse.  By the time I ended up hospitalized again, I was limping. 

The Tuesday before Thanksgiving I had terrible diarrhea.  No other symptoms at all, just diarrhea.  Despite eating a liquid diet, then eating nothing, it continued.  I spent Thanksgiving day sleeping on the couch or sitting on the toilet.  By the following Monday I knew all the Gatorade in the world wasn't going to keep me from getting dehydrated.  Plus I felt the tell-tale signs of muscle aching in my upper thighs; a sure sign that my potassium levels were getting low.  I called my doctor, anticipating what she would say, which was to go to the ER.  Sure enough their initial blood work showed my potassium level as 2.2 with the average healthy level being 3.5-5.0.  I was admitted after 9 hours in the ER.  I spent 11 days in the hospital.  While I was there the admitting doctor brilliantly called for a kidney consult as he was so concerned about my potassium levels.  That is when my life was forever changed.

My kidney doctor is a fabulous man whom I admire and respect greatly.  I will forever be grateful to him for being the one who finally found out what was going on with my body and my health.  After many discussions and tests I was diagnosed with Distal RTA, which is Type 1 of Renal Tubular Acidosis, and Sjogren's Syndrome.  I know I also have Peripheral Neuropathy but have not yet found a Rheumotagist to oversee the care and treatment of my Sjogren's.  The Distal RTA my kidney doctor will continue to treat as this deals with my kidneys.  He also has a dietitian in his office who I will be seeing to help me re-learn the healthy way to eat. 

As I type this I have been home from that hospital stay for only a week and I am on new medications; one that appears to be helping and one that is too soon to tell.  I'm educating myself about these illnesses by reading everything I can and talking to other's with the same, or similar, disorders.  When I was in the hospital I was getting physical therapy for my left leg and now have a walker.  Some days I can walk without any problem, at least for a bit.  Other days I limp and some days I do use the walker.  Hopefully the auto-immune suppressant I am on will help with this. 

For me this has been a spiritual wake-up call.  I was not caring for my body, mind or soul the way that I should be; the way that I deserve to be.  In some ways this diagnosis has been a blessing.  I now know I wasn't just lazy, depressed or crazy.  There wasn't anything wrong with me.  I now have tools to manage all those very real health issues I struggled with daily.  I can hold my head high and say that I have an invisible illness, the illness does not have me.


1 comment:

  1. What a painful but incredible story Tara. I have Sjogren's but I also have Fibromyalgia and many other Chronic invisible health issues. You are one strong willed woman. I congratulate you on that hun.