personal journey with lyme disease

Just holding in the tears today May 30, 2012

Filed under: Uncategorized — iammorethanlyme @ 5:50 pm
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Hi to anyone out there reading my blog.  I really despise these days when I can’t get away from myself!  May for the most part was terrible health wise.  Mother’s Day and one of my daughter’s college graduation and another one’s birthday and dinner out with a sister and my two cousins were the highlights.  Not to say that I had a worse month than anyone else out there with a chronic illness, but I spent over two weeks fighting some unknown illness causing fevers, SEVERE abdominal pain, nausea, vomiting, rashes and pure misery.  I usually do anything NOT to go to a doctor unless it’s scheduled and the ER.  After 24 hours of not being able to stand upright, I thought I should see my internist.  I saw a covering doctor who was very concerned by his exam – rapid heart rate, blood pressure of 122/82 – I run low (usually 106/64) with a rapid pulse – and his exam of my abdomen actually caused me to grab at his hands and my whole body was shaking.  So I was sent over to the hospital for an emergency abdominal CAT scan to be sure there was no blockage or rupture.  If I did not end up in surgery, the doctor then wanted me to go to the ER for pain management.  Well, nothing emergent and I was not going to the ER, so home we went.  That was on a Monday.  Tuesday, the same doctor I had seen called twice to check on me and tell me that he still did not have the hard copy of the CAT scan even after repeated calls.  He was out on Wednesday and said he would fill in my doctor.  I called repeatedly – okay, twice – Wednesday and did not hear back from my doctor which is extremely unusual.  On Thursday I call and get immediately connected to him.  Funny thing is he tried me from his cell phone multiple times and for ONCE my Do Not Call Registry blocked that call !!!  I told him I was still miserable, not sleeping, waking vomiting bile, vomiting at random times, still with fever (which I never get a fever and especially not for 5 days).  He insisted I come in to the office for IV fluids, blood work and an exam.  This meant I had to call my husband again and have him leave work as I am unable to drive.  Blood work, blood pressure checks, 2 IV’s and an exam of my abdomen showed my symptoms unchanged.  We decided to stop all my antibiotics for at least a week to see if my gut was just overdone.  Home again, home again.  Already had a visit schedule for the next Wednesday (May 16th), so that was perfect.  Fevers and nausea continued but pain did start to lessen.  Add in new symptom  – thyroid pain – it actually hurt to touch the outside of my throat.  OK stay calm, just because my mother had a huge goiter removed from her thyroid when she was thirty, I already had been seen for multi-nodular small goiters.  Now on an interesting note I had made a follow-up with my endocrinologist but she cannot see me until September!  So at my follow-up on May 16th, I had more extensive blood work done for many thyroid tests and have yet to hear the results.  Yes, I called and yes, I called again to get them faxed to my lyme literate neurologist for my visit yesterday.  No, they did not have them when I showed up for my appointment, nor did they get my abnormal EKG.  Before I get to yesterday’s appointment let me just finish with my last follow-up where my doctor once again did an exam which showed continued pain and it was ten times worse when he asked me to lift my legs (no small feat with tremors).  Now he believes as do I that I have myopathy (muscle disease).  This causes weakness, inflammation, spasms and in severe instances paralysis.  There are varying treatments from physical therapy (which I start again next week), bracing (had leg braces – not going back to that), pain management (icing, heat or OTC medicines.  Well, that now explains how I could possible gain 20 pounds during the course of this illness where I spent more time in the bathroom than the dinner table, drank water or lemon water to the point I had to stop the lemon water due to mouth sores.  I knew I looked puffy which scares me for another reason – my mother and her mother died in their 70’s from congenital heart disease.  My mother had half the heart function of a normal person since she was 60 if not younger.  But – she smoked, she drank, she was obese.  I always exercised, never smoked or drank.  But all these abnormal EKGs are now sitting in the back of my mind along with my rapid heart rate and palpitations.

Oh my, I am tired now and this wasn’t even the reason for my weepy feelings today.  This is due to lack of sleep and my long visit with my lyme-neurologist yesterday.  I have to stop for now.  Thanks for letting me spill part one of me feeling sorry for myself – something I do not allow often at all.  xoxo to all, Kath


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