We Interrupt This Quilt Blog for a More Personal Look at Multiple Sclerosis

I try to keep this blog about quilting or my kids, but there are days (weeks?) when my multiple sclerosis (MS) issues need to be written down…for a reference for myself and as a legacy for my children.

Sometimes life just stinks and you have to make the best of it.

Two years ago, the neurologist I was referred to told me I was too old to be diagnosed with MS and she made me get another brain MRI before she believed it.  Once she saw that report, she not only could see the three lesions I already had but a fourth one was demyelinating, too.  At that point, she begrudgingly agreed that I had MS, though I did not have some of the common symptoms so she still wasn’t 100% satisfied.  And part of that, admittedly, was that there is a vascular disease on my paternal side of the family that causes brain and heart aneurysms – it has already killed my dad and my brother, so although she was agreeing with the MS diagnosis, she still kept me mostly in the dark about MS because of this genetic disease.

She had home health come out and give me a high dose of steroid infusions over a three-day course.  That helped the swelling in my brain enough that I wasn’t so off-balance and could talk better (where the third lesion was located was in the left area of my brain that controls everything on the right side) and could at least eat without choking.

And now we come to this year…the year that MS has reared its ugly head.  And if that neurologist didn’t think I had MS before, she definitely believes it now.  I have had horrid burning in the nerves in my legs and feet.  It feels like I’m walking on a bed of coals – except my foot is not hot, it’s the nerves inside that are burning up.  And the muscle spasms in my feet and legs are nearly constant.  They had slowed down for a while when I started the new injection medication, but they are back with full force now.  I obviously notice them happening more when I am on my feet a lot during the day.  And the dizziness I spoke of before is happening a number of times during the day.  I could just be laying in bed and the little roller coaster in my head starts up and all I can do is try to focus on something (like reading my Nook) and it will eventually go away.

But this past Monday was a day I never want to have again.  I never want my kids to see me like that again.  I never want my husband to have to care for me like that again.  Monday is gone, I pray I never have another Monday like that.  EVER.

I was fine in the morning on Monday, as fine as I usually am, with some hip pain.  I had an MRI appointment in San Antonio (80 miles one way) and my husband and I went to that and came home.  Hence, I was later that usual in taking my afternoon meds…but, that’s not been a problem in the past.  When I got up from nap is when the nightmare started.  I sat up and not only was the roller coaster in my head spinning, but the entire ROOM was spinning!  I went to the bathroom, thinking it was just a minor issue and that it would go away like the usual dizziness I live with.  I then went outside to visit with my foster mother.  When I got up to come back into the house, I realized I couldn’t walk – the spinning of the room was such that my brain was unable to tell my feet to move.  I saw our youngest daughter and asked her to help me across the room to our bedroom.  She did fine but once I got to the bedroom door, I was once again paralyzed and these darned feet wouldn’t go forward anymore.  My husband came and took over for our daughter and was able to keep me upright and aimed at the bed.  Unfortunately, that youngest daughter was not the best choice to help her mommy – she was terribly traumatized by the whole event and it took another hour before she quit crying and asking if I would be okay or if I was dieing.  <gulp>

I couldn’t open my eyes.  I couldn’t sit down because my hip hurt so bad.  My husband got me into a prone position and then went and talked to the kids about what they had just witnessed.

After the kids ate dinner, hubby came into our room and it was shot night so he got the shot ready and gave it to me, then brought me my nighttime medicine to take.  He then had to take my clothes off of me and put my pajamas on – that was how paralized I was from the MS.  He got me laying down and covered me up and I was done for the night.

Well, not quite done – I had to get up in the night to use the bathroom, but instead of taking the usual right turn after going past our bed, for some idiotic reason I turned left…and ran smack dab into the chair that we put between our bedroom and the living room so the dog won’t go into the living room and sleep on the sofa!  Once I hit that chair, I knew I was going down, I just didn’t know which part of me would hit first.  I guess my head was the best choice (I really had no choice because the room was still spinning) and I landed on my forehead.  Good thing as this head of mine is pretty hard and I didn’t even get a rug burn!  Once I righted the chair and woke my husband up with my gymnastics, I remembered the way to the bathroom and went there.  When I came out, hubby turned on his bedside lamp so I could see to get to my side of the bed.

When I woke up Tuesday morning, the world seemed right.  No lasting effects of the dizziness I had endured the day before, though now both of my hips hurt.  We think it’s because we need to get a couple more tubes for our soft-sided waterbed….accompanied by the fact that when I take my medication at night, I do not move from the position I lay down in.

That’s an awful day in MS-land.  We continue to pray for days that are way better than last Monday!

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    1. Robin Bunch says:

      Oh Tammy, what an absolutely awful day! I pray it was a one time occurance. So sorry it happened. I hope the rest of this week and onwards will be better. Sending positive thoughts and wishes your way.
      Just signed up yesterday for the MS walk in Annapolis, Md on April 7.

    2. mel says:

      MS is an AWFUL disease. You’ve been handling it much better than I would. I’m so proud of you… but, in the same breath I’m sad that you have been given this burden to deal with. BLESS YOUR HEART. Love you.

    3. Carole Sue Taylor says:

      I’m glad you opened up about your health challenges. Live every good moment to the utmost. When the illness overtakes you, give yourself over to enduring and healing. Let those who love you help. Sometimes it is the one gift we are most reluctant to give. Regarding your children, I venture some advice garnered from my youth as daughter of a chronically ill mother and also a mother who was diagnosed with the same disease (Crohn’s) at 16. Do not wall off your suffering from your children. It is terrifying for them. Let them have the information they can understand, and even in your pain, let them know you are still their mother and the bonds of love are stronger than any disease. God bless you.

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