Tuesday, October 15, 2013

How I got here. Part 1.

So now that everyone knows I'm pregnant (and old), I know everyone is wondering how it happened.  And I know this because of all the people who have asked me in real life.

I'm not offended by their questions.  People are curious. I'm curious and I would want to know the same things.

Was it planned?  Was it an accident?  What the heck were we thinking?

So here it is in all it's glory.  The story of how I became pregnant at 44.

I'm going to go waaaaaay back to 1997 and start from there.  It's technically not the beginning for me, because that would be 1969, the year of my birth, but that would include a lot of info that's not really relevant so we will start in 1997.

That's the year I was diagnosed with Multiple Sclerosis.  I had a lot of numbness and tingling in my feet and after seeing several doctors and going through lots of tests, it was determined that I had MS.

I was shocked.  Not devasted, just shocked.  The doctor that diagnosed the MS told me there were lots of other things they were testing for and MS wasn't the worst thing it could have been and I guess I found that comforting. 

MS is (according to my good friend Wikipedia) is an inflammatory disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a wide range of signs and symptoms,including physical, mental, and sometimes psychiatric problems. MS takes several forms, with new symptoms either occurring in isolated attacks (relapsing forms) or building up over time (progressive forms).Between attacks, symptoms may go away completely; however, permanent neurological problems often occur, especially as the disease advances

I have relapsing MS which is thankfully, the less horrible of the two forms.  It means I could have an attack with symptoms and then they go away and I'm perfectly fine. Progressive means the disease progresses and there are no relapses or remissions from the symptoms.

So, I was diagnosed with relapsing/remitting MS in 1997.  After high doses or steroids, my symptoms eventually went away and I was fine.  I did have to begin taking a weekly intramuscular shot (Avonex, which was injected by my boyfriend at the time who eventually become my dear husband) and I will say I hated that.

The shots were painful because they had to go into the muscle, for the first 6 months or so they caused flu-like symptoms every time I took one and were just an all around annoyance.  But they were keeping the MS from getting worse so I continued to take them even though I hated every minute of it.

Fast forward to the end of 2001.  Dan and I had been married for a year and a half, built a house, and were finally ready to have kids!  Before we could start trying to get pregnant, I had to go off the Avonex for 6 weeks. This drug is pretty powerful and stays in your system for a long time even after you are no longer taking it.

By March of 2002, I found out I was pregnant! I had Peter in November 2002 with zero problems.  I continued to stay off the Avonex because I hated taking it and because I knew we were eventually going to have another baby.

By September of 2003, I was pregnant again.  Sarah wasn't planned but we weren't exactly trying not to get pregnant either.  So, happy surprise!  Just pregnant a little sooner than we thought we were going to be.

I had Sarah on June 4th, 2004 and things were great until the 4th of July. When you are pregnant, your body produces a lot of natural steroids.  These steroids protect pregnant women with MS and typically pregnant women with MS have zero symptoms throughout there pregnancy.

But, the chance of having a relapse in the first six months after you deliver is as high as 40%!

We had been outside watching some of the neighbors shoot off fireworks.  Sarah, being only 1 month old, was not amused.  I took her inside and we watched the fireworks from the window.

I remember holding her, watching the fireworks in the sky and feeling a horrible pain in my right, upper arm.  There was burning pain and my head felt dizzy. At first I thought I had been bitten by a spider but we could see no visible marks.

After a couple of weeks of this pain and dizziness coming and going, I headed to my neurologist for my annual appointment.  The neurologist gave me some steroids (not as much as he should have, in retrospect) to help with this new flare-up.

After I took the course of steroids, the burning pain and headaches and dizziness were still there.  The doctor prescribed several other medications to help the pain but nothing seemed to work.  I also felt like this doctor didn't believe that I was actually in pain. (With MS pain, there is no actual physical cause for the pain.  It's basically your nerves sending pain signals to your brain for no apparent reason.) This neurologist was not an MS specialist but he should have known about this!

I switched neurologists and she tried other combinations of medicine.  She was a much nicer doctor but MS was not her specialty either.  A neighbor of mine who also had MS  recomended her neruologist who specialized in MS patients.  I was on a waiting list but finally got in to see him.

He said that my first neurologist should have given me much, much larger doses of steroids and that might have gotten rid of them all together.  So, at his suggestion, I went to the hospital for 5 nights in a row to receive IV steroids.  At this point, I was ready to try anything.  I had been experiencing the burning pain (which had now moved from my upper arm to my neck) and the headaches and dizziness for 16 months.

The pain and dizziness (or "spells" as I affectionately referred to them) would typically come in the evenings and would last for up to 45 minutes.  Eventually it got to the point where they were lasting upwards of two hours or more.  And when I would get a spell, I would basically just curl up on the couch until it passed.  The pain was so intense that it was hard to move or even to talk.  It made evenings with me oh so pleasant.  Just ask my poor husband.

Or, there would be days when I would have 5 or 6 spells each lasting 20 minutes.  The spells, like MS, were totally unpredictable and just kept getting worse.

The IV steroids did not help but my neurologist continued to play around with my medication and at least he was trying to find me some relief.

At this point, we moved from Charlotte and he recommended another MS specialist in the Winston-Salem are and he also kept switching up my meds and we eventually settled on  Carbatrol and Lyrica. (Carbatrol controls seizures but for some reason has been found to be helpful with MS pain.  And Lyrica is for shingles pain which apparently is very similar to MS pain.)  I was also taking Betaseron instead of Avonex.  Betaseron was also a shot (luckily subcutaneous and not intramuscular) but it had to be taken every other day instead of once a week.

The kids were 2 and 3 1/2 at this point and we still wanted more.  But what to do?  What to do? Should I go off the Betaseron and try to get pregnant?  Should I just be happy with two healthy kids and try to improve my own health?  

I'll try to finish up this lengthy discourse tomorrow.  (I'm totally boring the heck out of myself with this story so I can only imagine how the rest of you are feeling at this point.  Although I would be shocked if anyone other than my mother actually got this far!)

7 comments:

Colleen said...

Not boring at all!! My Brother in law has MS, and when he has attacks, it is so so bad. I really am interested in hearing your whole story!

Busy Bee Suz said...

Wow. You've been through a lot.....what a gift to be able to even become pregnant. I'll be reading the next installment thank you very much. :)
I didn't even know there were different forms/ranges of MS.

Mari said...

NOt boring - very interesting! I'll be back for part 2. :)

Aimee said...

No, not boring me at all!! I love to hear these kinds of stories -- this is the real-deal story that makes me unable to really quit the internet!

Can't wait to hear the rest.

Ferrell Boys Mom said...

I can't wait to hear the rest of your story! I had my last child when I was 43 years old so I can totally relate to being pregnant and old! :)

Billie Jo said...

Not boring me at all!!! Keep going, please! Because we have recently "met", I am thankful to share your life and story...

Kim said...

interesting...I am going to look up more about MS. My husband's side of the family has a similar condition called bey-chetts (sp?) syndrome. A lot of what you described is all the conditions my husband complains about. He has no dx though...