8. Rollercoaster

My week started off pretty well and, financial concerns aside, I felt like this was finally something I could live with.  I had numbness in my tongue, throat, torso front and back, arms and hands.  My ability to control my hands without looking at them was not very good, neither was my handwriting.   However, I could  walk, take care of myself and even help take  care of  the kids here and there.  I really felt good and wasnt in discomfort or pain.
By Tuesday, the numbness in my tongue and throat increased and I was very anxious to get into see the MS specialist at Griffin Hospital.  I walked the whole length of the hospital just fine (I was pretty proud of myself.  It's the farthest I had walked in a month). I was very hesitant to actually get to the waiting room though.  I was not sure what I would see.
I used to work as a CNA and one of my patients had MS.  I remember him having such bad muscle convulsions that he would have to wait until they subsided before he could regain normal speech.  His family eventually ended up deciding to place him in assisted living because we could not meet his needs at home.  I remember they asked me if I would accompany them to his new home.  That was the last time I saw him.
Anyway, so was I goimg to find a waiting room full of sullen, convulsing patients in their wheelchairs?  I didnt look around much but did notice there was a range of people,  from younger to older, with and without assistive devices.  While we waited,  we read through a newsletter written just for, and by, kids who's parents have MS. Maybe Ivory could write HER story?  We werent  waiting long before we were called in.  The doctor got a thorough medical history.   He showed us my MRI scans.  Surprisingly, the MS lesions werent lit up like a huge ball of fire like I had expected, but more of a faint shadow.  The doctor noted a few on my brain, the one on T3 and, most notably, the one on the top of my spinal cord.  We could see from the scan that in wasnt just sitting on my cord, it was within it.  He did a neurological exam. As part of it, had me walk a straight line heal to toe.  Oh boy, if I ever drive again Im going to need a card that says... just go straight for the breathalyzer.
The doctor asked if I intended to have more children.  I was so shocked I didn't know how to answer. I silently ruled out that possibility weeks ago.  He recommended a second round of iv steroids to try and get me back to normal sooner, wanted to run some additional blood tests to rule out other conditions, gave me some more meds to add to the ones I already have (I HATE taking pills).  He then gave me literature on all the current MS drugs and sent me on my way.
Later that night, I sat down with all the literature.   Each drug came with it's own box of info, cd, tabbed file folder and gadget to make you want to choose their pill, injection,  infusion or such.  I opened each one and went straight to "side effects".  I then took a marker and, in my best penmanship, wrote the number one side effect on the front cover.  Let's see... I have to choose between: vision loss, liver failure, rare brain infection, depression/suicide.  Or, from the thinnest packet, with no cd or gimmick, low white blood cell count.. but that one has only been on the market a few weeks. ?.. I think I will look this over some other time.
Wednesday brought the start of my second round of steroids.   When the doctor calls in the order, the meds get shipped to Walgreens and a nurse gets "dispatched" to your house to deliver them.  So, the nurse shows up with my "kit".  She pops up my new IV stand, hangs the meds, after blowing up a vein or two finally manages to set my catheter, has me sign some paperwork and hands me my "do it yourself" guide to administering  my meds.  Seriously?  Now I've done this a million times on animals, but never on myself.  I ask "so, you will be back tomorrow"?  She says "no".  "so, then you will be back in 5 days to pull the catheter"?  She says I do that on my own too.  OK....
I get up early Thursday morning so that I can run my IV before my big day at Yale. I've been awaiting this for a month. I feel terrible, the room is spinning, I'm throwing up, I do not want to go. My husband convinces me otherwise and we are in the car. I don't care much about the waiting room today as I'm the one in the wheelchair hunched over and unable to stand. The clinic is beautiful, its like they just cut the ribbon before we arrived.  The nurses are wonderful and we were taken in quickly.  We are lead into the doctor and all I can do at this point is creek one eye open. I apologize for my lack of sociability. Im feeling awful. Again she takes a long medical history and reviews the scans.  Her bedside manner it's much different than the previous doctor at Griffin we saw. She explains the illness and process that we are going through. She is there to help us.  She gives a longer response time, 6 months, until Im back to where I was, but she seems confident I will get back there.  She reviews with us many treatments for MS, all covered in those scary folders.  Her drug of choice is the one that causes a rare brain infection but it only happens, she explains, when exposed to the JC virus which is a strain of the common cold. Does she not remember we have 3 kids? We are the common cold. She asked me, however, if I plan on having more children. I don't know if you remember this is something I've heard before. Is it possible? I am blessed to have our three children,but we are now a family of 5. If anything happened to my children what I want another? Not that I could ever replace them but we are a family of 5. Its something I don't want to think about, but all moms do.  I know that.  Her reason for asking is that she recommends the most aggressive treatment....and it is not compatible with having more children.  Great, another choice.  I don't even know, in my heart, that my body would be healthy enough to be pregnant again.  She goes on to tell me that my odds of getting MS were 1:1000. My children's odds are 1:199.  That kind of makes my decision for me.  I ask about natural treatment.  She does support it and admits that high doses of Vitamin D work just as well at preventing further attacks as some of the medications out there.  She tells me, in her opinion, that I do not have the luxury of choosing a natural approach.  Due to the size, involvement and location of my biggest lesion, it could be disabling.  My lesion, as I mentioned, is at the base (top) of my spinal cord and therefore has effect on everything below it.  I do not have the courage to ask, nor hear, how disabling but Ive done research on paralysis caused by MS and I prefer to leave this one unanswered.  She recommends I stop the IV steroids, that they will only increase the speed of recovery, but not restrict it.  If steroids are causing this dizziness than we should stop. She comforts me with one last remark: unless I cant swallow, anything else is just  a new MS symptom and is not an emergency. I had some blood drawn and will meet up again with her in a month to start treatment.
I have just gotten more and more dizzy since then and haven't even been able to lift my head in 4 days :(
That was my week! Rollercoaster