Tuesday, February 7, 2012

Hey Kids! You Get to Watch TV Today!

I have a cold. 

Poor me.

Three years ago, a cold was no big deal.  I would just carry on as usual, with a few stops for nose blowing and extra hand washing.

Not so anymore.

Two years ago, I started having weird sensations near my left temple.  With no warning, it would feel like a dam was opened in my head.  It would last for a few seconds, then go away.  It would happen once every few months, but then it started happening every week.   Hubby got concerned and guilted me into going to the doctor.  An MRI later, there was nothing to see.  But, my routine blood work was flagged.  My red blood cells, white blood cells, and platelets were low.  I was told to get them checked again in a couple months.

I was also having some major fatigue, but chalked it up to recently giving birth to my sixth child.  Who wouldn't be exhausted?

As the two months went along, Cuckoo was weaned, I was getting sleep, but the exhaustion was still there.  And pain started creeping up.  I first became alarmed when one day I was feeding Cuckoo a jar of baby food.  By the end of that one jar, I could barely lift my arm it hurt so much.  And it kept getting worse.  My wrists hurt so bad that pushing a stroller was torture.  By 9:30 in the morning, I was too worn out to climb one set of stairs.  Joints were hurting, muscles were hurting.  But I was so busy with the kids and all that comes with them, that I wasn't able to figure out a pattern or triggers for any of it.

The two months passed and I went back for the blood test and check-up.  Numbers still low, and with all of the pain (and swelling she felt in my wrists), I was sent to a rheumatologist. 

I think he diagnosed me before he even examined me.  Although, I wasn't the best patient.  I wasn't able to explain what I felt or when I felt it.  He started poking different spots on my body, and asked if they hurt.  Yes, yes, and yes.  He then told me that I had fibromyalgia.  I guess the one question he didn't ask, and the answer I should have given was, "Those spots all hurt, but no more than here, here, here, and here."  A big indicator of fibro is pressure points.  If a person has pain in 11 of certain 18 spots, fibro is a leading suspect. 

He put me on a low dose of gabapentin and sent me on my way.  This particular drug is for people with seizures, but it took away the pain for many fibro sufferers.  It also had a bit that helped me sleep, as the pain woke me up most nights, and I was getting very little sleep.

I was happy with the diagnosis, as it meant I wasn't going to die.  My nerves were just over-sensitive.  So even if I was in some pain, I could ignore it and move on.  I wasn't hurting myself by doing so.  I went to college on a track scholarship and I gave birth six times, and the last three were without pain meds.  I know how to work through/ignore pain.

For several months, I felt much better.  I, of course, attributed it to the medicine.  There was pain, but not nearly as bad as it was. 

Then warmer weather came along, and the medicine wasn't cutting it.  I was in more and more pain.  Another trip to the rheumatologist, another set of blood tests, and an increase in my meds.

I took the higher dose for a few weeks, but had to stop.  They made my brain completely fuzzy.  I couldn't focus on a thought for more than a few seconds.  I was forgetting things, like names of people I have known for years.  I went back to the lower dose.

When the blood tests came back, it revealed that the red cells were back up, but the white cells and the platelets were still down.  Oh, and I was positive for a clotting disorder.

Off to the hematologist I go.

She and I spent a few minutes in the room together, and she came up with a diagnosis of perhaps early Lupus.  That knocked me for a loop.  I couldn't even ask questions, I was so dumbfounded.  Like I said, I am an awful patient.  I was to start taking baby aspirin every day, so as not to die of a pulmonary embolism, and get my blood tested every month.

I went out to the parking lot, called my husband, and scared him half to death, because all I could do was cry.  I managed to splutter something about Lupus, but I was just so overwhelmed and tired and confused that I just needed to cry.

My life became a series of doctor visits and needle sticks.  By this time, the medicine wasn't taking away any pain at all, so at my next appointment, he gave me a perscription for an anti-depressant.  I never took it, I stopped taking the gabapentin, and I stopped going to see him. 

I have finally started to take control of the situation.

I have figured out that sunshine is a trigger.  That's why the meds seemed to be working.  It was winter when I was on them.  I am now the crazy lady under an umbrella at all soccer games.  I try to garden only in the early morning or late afternoon.  When outside with the kids, I look for the shady spots. 

Anything repetitve or prolonged makes it hurt.  Scrubbing, vaccuuming, holding a book to read, going up steps.  I even had a hard time balancing the checkbook and paying bills last month.  The writing about killed my arm.

I make myself sit down during nap time (thus the blog).  If I don't, I am useless by 6:00. 

And a cold.  When I get a cold, there is nothing that makes me feel better.  My hips hurt when I sit, my calves hurt if I stand, my thighs and shoulders hurt when I lay down.  The easiest things become a problem.  Shoot, my wrists hurt right now from typing. 

Hubby helps by giving me massages, although he hates to do it.  I used to love a deep tissue massage.  They would hurt, but at the end I felt so much better.  A massage now means he softly rubs my legs while I curse him out in my head.  Sometimes tears streaming down my face.  But I know, that when he's done, my legs will feel better.  And he knows that, too.  So he does it.

Through six months of blood tests, my numbers stayed low, but not dangerously low.  I am done with the hematologist, and just need to go to my primary care doc once a year to get the blood checked. 

I'm still not satisfied with the lack of a true diagnosis, but I'm taking a break from doctors for a while.  I am basically in the same place I was two years ago, except that I am taking aspirin.  I'll go to a different rheumatologist, and I'll be armed with a better understanding of what is going on.  Hopefully we'll figure something out.

Now, enough of my pity party.  Being sick put this front and center in my mind.  Normally it's not.  I have way too many other, better things to stay focused on.

Have a lovely day!


  1. I love you. Take care of yourself.

  2. I sure hope you feel better soon! This cold that's going around is such a doozy. I can't imagine it in combination with the other things you are experiencing!

    Get some rest, friend!


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