Wednesday, July 11, 2012

At Least It's Not In My Head...

For the past three months (or so it seems) it's been a slow, gradual decent into my own little Hell.  At first I thought I was just going through a phase where I was unmotivated.  And when I say unmotivated - I mean completely without motivation.  Completely.  If I could have had hired a personal tooth brusher and car driver, I would have.

Feeling unmotivated made me feel very guilty.  There's a lot to be done - especially with the kids.  I just didn't care.

Then came the flare up of my Rheumatoid Arthritis.  Every joint in my body ached - even my arms and legs felt like someone was squeezing the life out of them.  My arms feel like they weigh 100 pounds.  Each.  It's a pain that lasts all day...every day...until today...and likely tomorrow.  I have RA, though, so I didn't think it was something other than that.

Then came the memory problems.  The impossible task of focusing or concentrating on anything.  The dark circles under my eyes, the cellulite that appeared and the grey hair sprouting.  (Leave me alone - I now have something to blame everything on.  Do you blame me?)

Then came the fatigue.  Extreme fatigue.  And when I say extreme fatigue - I mean bone crushing exhaustion.  I never do things like announce in the middle of the day, "Sara - I need to go take a nap," but I did.  Or I would go upstairs to sit down in my room to see if a half hour of down time would revitalize me.  I'd end up passed out.  It was a big tease when I was waiting for those pregnancy results.  I thought the exhaustion was a sign of pregnancy.  Nope.  Unless that freaking tick impregnated me, but I guess that would be pretty rare.  I kid...

I felt terribly guilty about the tiredness.  There's a lot to be done - and the world doesn't stop.  Brian needed to get to school, Gavin had therapy, people wanted my has been hard.

Then came the dizziness, the lack of all kinds of appetite, the achy eyeballs that made wearing contacts feel like wearing glass in my eye, the constant trips to the loo, the shortness of breath when I exerted myself by walking up the stairs...changing a diaper...or lifting some cheesecake into my mouth.  (What!?!  Cheesecake is very dense!)

It was then I figured it out.  It was depression.  I cut myself a break a little bit.  I mean, really - my life is starting to seem "made up" with the constant drama that doesn't stop.  The most recent events alone...losing my Dad and a failed egg donation attempt...would be enough to put someone out of commission for a while!  I assumed this was what it must feel like to have "HAD IT!" - the "LAST STRAW" - the "I CAN'T TAKE IT ANYMORE" moment.

And, because I diagnosed myself with depression - I found myself becoming depressed.  I'm not the type to stop, though.  I like to stay busy.  So when Ed noticed that I wasn't "me," he told me to get my iron checked.  To go to the doctor.  To get a blood test.  To check my blood pressure.

Through all of this, I dragged my achy, bone crushingly tired, dizzy, eyeball hurtin', depressed body to our beach the the Crayola therapy and preschool and even a neighborhood party.  Each day I felt like I was going to die.  I would collapse into bed at night very early...and wake up feeling like I hadn't slept in days.  I forced myself to act normal because I didn't want my self diagnosed "depression" to affect the boys.

But last week, it got worse.  Really worse.  And I started to worry.  Really worry.

I called my doctor and asked him to run some blood tests.  "Test me for everything," I said.  "I'm pretty convinced that I have Cancer or a brain tumor or MS or something bad.  Really bad.  Oh, and test me for Lyme, too."

This past weekend was torturous for me - I won't lie that I started thinking about the "what ifs."  Like what if I died from whatever I had.  Which made my self diagnosed "depression" even worse.

I started thinking more about Lyme over the long weekend waiting for the results.  I wondered if I did have it, how long I've had it.  I wondered if I got it years ago and the arthritis was merely a symptom of Lyme - not a completely separate diagnosis.  Then I really went crazy and started researching "Congenital Lyme" and wondered if Gavin could have been born with it.  It was a long shot, but it could be possible.  I wrote to his geneticist and she responded within a day (on the weekend).  She spoke with the infectious disease doctors (who have written extensively on Lyme disease) who said it is possible.  She also did her own research and spoke with the author of a journal article in the publication Teratology called "Teratology Update:  Lyme Disease" and he said, too, that congenital Lyme is biologically plausible.  It also may or may not be a factor in pregnancy loss (another one of my questions).  We are going to have Gavin tested either way.  Brian isn't showing any symptoms so I'm on the fence about testing him.  I'm thinking about it.

My blood work suggests that this is a recent infection and not something I've had for years.  But my question for the infectious disease folks (who I haven't met with yet) is - how far back is considered recent?  A month?  Six months?  Five years?  This will also help me determine if it's possible I could have given Lyme to Gavin.

I've been in overdrive since I got the news.  I have a thousand questions and not a thousand answers I don't quite have a game plan past taking strong antibiotics for a month.  Which my stomach will tell you started yesterday.  I'm looking into getting tested for other types of bacteria and other, stronger treatments to knock this out for good - but I don't know what I'm doing quite yet.  I'm waiting to hear back from several people.  I'm sure I will be including Dr. Trish, my acupuncturist, Dr. Kang - or both in my treatment.

I feel devastated when I think that this could be the reason why my last attempt at pregnancy didn't work.  Or the reason I've lost so many babies.  But I can't look back now - what's the point.  I've gotten some emails telling me to watch the Lyme documentary, "Under My Skin" - but I'm terrified at the moment.  I will watch it - but not yet.

Lyme disease.  I still can't believe it.  But if there's one good thing - at least I'm not dying.  And now I know I'm not depressed.

And at least it wasn't all in my head. 


  1. I hope the news is good about Gavin and Brian. I hope it is really new and everything will be okay. I'm praying for you

  2. I totally get what you mean about finally having information and you're not crazy. I've recently discovered I have a something called Gilbert's Syndrome, where my liver is missing some enzymes, and can't process toxins or certain medications. It is also characterized by fatigue & other issues I've had, and it's made a world of difference to understanding my health.

    I'm SO glad you have the information, and I hope you're feeling better soon! Hoping all the ongoing tests give you more clear information that is helpful.


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