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Tuesday, December 15, 2015

Multiple Sclerosis

Ok, I know that most people know but I wanted to document this years crazy ride.  I write this blog mostly for my grandma, also for my own record keeping (It's fun!), and for all those wonderful people who check it every now and then.  So I hope you don't mind me rambling about this.

This actually started about a year ago.  I would have a numb leg for like a week and it would go away.  Months would pass and it would happen again.  Then this past summer I started feeling patchy numbness on my left leg starting at the foot, a little on the thigh.  Then it was the whole leg.  Then in was all the way to my bra line wrapping around my waist with pressure "hugging" me around my waist.  I finally go to the doctor.  They order 2 MRIs.  At this point there were 2 options.  MS or sciatica.  The MRIs came back that I had multiple lesions in my brain and spine.  A thrid MRI was ordered (of the rest of my spine) and it also showed lesions.  One of the lesions in my brain was also showing as "active."  My doctor ordered IV steroids for my symptoms. This is where I am going to share with you some pictures.  This happened so fast that I had to take the kids with me most days.

 I brought ipads and books.  Kaylee especially was so sweet during the whole process.  Holding my hand while my blood pressure was taken.  Then patting my arm as she watched them put the IV in without flinching one bit. (Future medical professional?)
 I got a lot of compliments on their behavior.  I was in the same room as people getting their chemo treatments so I also got a lot of "Oh I bet they are used to this aren't they?"  I didn't want to explain that I wasn't THAT sick, so I nodded my head politely.


This was supposed to be a 5 day treatment.  It ended up being a 4 day treatment.
Kaylee even read to me while I was getting the infusion.  I tried to teach her how to do the Magic Eye books.  I don't know if she saw anything but she still thought it was cool.
It was nice when we had our own room.

This is the IV in the middle of my arm.  They always have a hard time putting IVs in me and drawing blood.  They lady who put this one they called the "Vein whisperer"  this stayed in my arm 2 days and 2 nights.
 This is how I would wear it when I went home.  Luckily people didn't ask.

 Ok so I didn't get my last treatment because I got picked up by the ambulance and went to the ER with what I later learned was an anxiety attack and the worst migraine ever all from the steroids.  I left on morphine and no appetite at all.  I was out of service for days after.  Another blessing, knowing that I was in the ER two of my primary presidency buddies (I'm the pianist in primary) came and brought me dinner.  I was SO grateful!  My mom and dad let me stay at their house for a few days.
My arm after the week ended.  The ER IV bled A LOT.  I was surprised.  Anyway.  as I mentioned in the October 2015 part 2 post was that I then had a lumbar puncture.  What a week.  I got the lumbar puncture on Monday.  I had to lay down flat the rest of the day and drink water.  I drank so much water I had to pee a lot.  I think I got up too much because although the first day was ok.  I was laying down the rest of the week because I got mile spinal headaches everytime I over did it or was sitting up to long.  The Wednesday after the LP I got a voicemail from my doctor telling my the I had elevated white cell count and they found lymphites.  She said these are commonly found in cancer such as lymphoma.  They didn't have all the tests in yet but she wanted me to call the next day and she said that she ordered a CT to make sure there wasn't any cancer "elsewhere."  I started crying immediately and I tried calling Kevin.  It was a weird night.  I didn't want to freak the kids out so I skyped with Kevin and the kids and tried to look like nothing was going on.  I told him I'd call later with the results that I had received.  I put the kids to bed and called Kevin.  I was crying and he was crying and he immediately left from his business trip to be with me.  He even took a personal day the next day to help me (I was still feeling like poo) and be there to await the call. After I called Kevin I called my mom and she called my dad.  They came over immediately and my dad gave me a blessing.  They stayed and kept me company until Kevin got there.  The next day I called right when it opened.  Then I waited for a call back and then at around 4:30 I got a call.  She had gotten the rest of the results in and she met with 3 other neurologists, one being an MS expert about my case.  With all the information including family history, it was clear the I did NOT have cancer but Multiple Sclerosis.  I would be starting on the same injection that my mom is on.on. Glatopa which is the generic of Copaxone.  I have been doing that for about a month now.  
I am SO thankful for all the love and support I have gotten through this whole experience.  So many people helped with kids, and food, and love.  My parents have spent money on this journey and let me stay at their house many nights.  My in laws have shown so much love and support and were willing to drop everything and come if needed.  I feel so loved and I feel so thankful.  Not only for my friends and family, but I am thankful that despite this diagnosis I can still walk, I can still see, I can still drive, I can still take care of my children.  These are blessings that a lot of people with MS don't have. So to answer the question "How are you feeling?"  I feel thankful.

1 comment:

  1. Oh Cindy. I read this and felt so many things...mostly in awe of your strength. So sorry for this trial you and your family are walking through; I'm sure it's a battle everyday. Praying you continue to draw on divine strength and know so many people love you! Miss getting to laugh with you in person!

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