Daughter. Wife. Mother. Employee. Friend. Volunteer. Pick out which ever title you like... any one of them can be a full time job in itself. Now, add Multiple Sclerosis Patient to that list and we have another ball of wax all together! I am all of those things and so very much more. I started this blog - not only as a part of my fundraising updates to friends and family, but as a journal of my life with MS. A place to share my struggles and triumphs with others.
18 June 2009
Well - I woke up this morning with my right arm numb/asleep from the elbow down through my fingers... mainly on just the outside... meaning that the inside of the arm from the crook of the elbow through my thumb seems fine... but I can't feel the other four fingers, and most of the hand... very weird...
I thought it would go away after a while - but here I am almost 10 hours later and it is still 'sleeping soundly' if you know what I mean... COME ON!!! WAKE UP ALREADY!
So far today I've managed to drop two cups of coffee, scattered a pile of mail in the hallway that I was trying to carry & sort at the same time, and learned that - while possible - it is extremely difficult to button a pair of jeans with my left hand! UGH!!!
Now I wonder at what point does something like this become an issue that might be considered a 'slight relapse' or 'symptom'? Already living life with a major loss of sensation on the entire left side of my body... I'm not sure I could handle it on both sides!
11 June 2009
Every time I speak with a support nurse, and she asks me to outline a typical week – her immediate question is ‘are you trying to make yourself worse & trying to provoke a relapse?’ I am not ever sure how to answer that one… I definitely wasn’t sure how to answer that one today! Is that what I’m trying to do? I wouldn’t think so. Maybe - in some way - I am afraid of stopping. I don’t want to stop – and then be in a position where I can’t get started again… does that make sense? I am afraid of being in a position where I have to actually admit that I am unable / incapable of doing everything… that’s not me.
So where do I draw the line – you know that proverbial line in the sand that says anything that is beyond this line is okay to let go of for now – but everything else needs to be maintained with priority? Furthermore, once that line is drawn, how do we know what goes on either side of that line?
I’m worn out. I’m tired. I’m disappointed… but I have a decision to make – and I’m being told that it’s well past time that the decision is made – so – hopefully I’ll make the right one.
So, my oldest daughter has started Karate class & LOVES it. I'm hoping that it will help instill in her the morals/values that we are working on... Here's just a snipped from her 2nd week in class! :)
Yeah - I know it's way off subject - but its still fun to share!
UC Davis Trial UPDATE
Randy, thankfully, took the day to come with me so I wouldn't be alone. I went through all the testing once again & then the coordinator left the room to call in to find out what medication I would be assigned... as she left - I jokingly told her not to come back if there were needles involved with her return!
About 15 minutes later, she returned - and to my delight - it was with news that I had been assigned to one of the oral options. (YEAH!!!)
02 June 2009
Next Trial Appointment
Tomorrow I play the Guinea Pig role once again... but it shouldn't be too bad. I have a MRI scheduled at the University in the morning, followed by a round of MSFC testing...
The MSFC testing is composed of a few things:
- two short 'timed' walks (I guess its just to make sure I can walk unassisted without completely tripping over myself).
- a peg board test... a series of 9 holes and 9 pegs. I have to pick up the pegs one-by-one and insert them into one of the holes - and then remove them all one-by-one... first with the left hand only twice, and then with the right hand only twice.
- a vision test... this one is a little weird.. the first screen is at 100% with bold black type. The second screen is at 50% with much lighter type. The final screen is at 20% I think - man that one is really hard! The type appears as barely a shadow on the page... (even my husband that doesn't have MS has a hard time seeing that one... he blames it on glare... :) )
- The last part is my least favorite part... it is a type of mental math test. a voice on the machine says a different number every 3 seconds... I have to add the last two numbers the voice said together... so for example, the numbers said could be "1"...(3 second pause)... "8"...(3 second pause & I have to answer '9')... "4" ... (3 second pause & I have to answer '12')... See what I mean... after 5 minutes of that a person just goes loopy!
Well - wish me luck... almost an hour in that MRI machine can drive me crazy - it is very very hard for me to hold my body still for that long! Hopefully I have a great tech that will actually listen to me & how I function best during those exams... if not - it could be a very very long day! My husband is going with me tomorrow - so at least I won't be alone. I'm so very lucky to have a guy as great as he!