Author: Stax

April 2007 thru October 2007 were rough months for me.  it began – again, very innocently – at a Beerfest (of all places!); in fact i just opened an email from them to Save the Date for 2010.  I was walking thru the crowd and i noticed that at times i would feel really high/tipsy and then nothing…hmm, i figured that maybe i was drinking too much beer and just getting tite…hmmm, odd tho, that the feeling would come and go, but hey, beers was flowing; i was happy.  Well after that (no drinks involved) i noticed that ever so often during the day, i would get this weird, high feeling that would last about 5-10 secs and then disappear…it just wasn’t making sense.  I went to the original neurologist who sent me for another MRI, saw no additional legions on my brain and then told me point blank, it’s not the MS!  I went to my PCP who sent me to an opthamologist(?) who sent me somewhere else…I was actually sick of people telling me that they couldn’t find anything wrong…that was also about the time that i was getting sick of being called “Mrs. O’Brien” as well, so i started shopping around for someone else.  The thing about finding someone else was that i CERTAINLY wasn’t trying to go thru the original testing again and i hoped that that would not be the case – that’s when i found the MS Center of Atlanta – WOW!  who knew such a place existed; i was so excited…

By then the “high” feelings were accompanied by double vision and lack of motor skills.  I was speeding/driving (some say i drive like a bat out of hell – i beg to differ) along 285 (4 lane highway in Atlanta) and realized that it wasn’t cool seeing 6 trucks, when in fact there were only 3…i got home and told G that she had to start doing all the driving – the beginning of my “non-hero” days

It was about that time that the jokes also started.  With my lack of motor skills, if it happened while i was walking, i really looked like a puppet OR i was marching.  one day D told me that all i needed was a brown uniform and some cookies to sell!  It was embarrasing; esp if i was walkign by myself.  S told me that i should stop walking when it happened, but that was just odd for me to do. 

I went to my new neurologist (who calls me Stacey, btw) and he said to me, well it has to be the MS, what else could it be, there’s nothing else wrong with u…i could have kissed him.  THANK U!!!!  In retrospect i think that that was all i wanted to hear because at least that explained what was going on.  Of course, with me, nothing is ever straightforward…so he explained that it was odd that the “episodes” (as they lovingly were called) happened all day long for about 5-10 secs at a time, but i should monitor, stay on my shot (of course!) and come see him again if things get worse…

i did that…luckily things diddn’t get worse, so i didn’t have to go see him outside of the schedule and then just like that in October/November, they stopped!  The disease had declared war and said to me, “yeah u’re the human and i’m the disease, so Take DAT!!!”

Well, what happens next is that i have to come to terms with this shit!

i honestly don’t remember what emotions i went thru (i can barely remember what i did yesterday, c’mon) but i do know that i eventually told myself that

1. it could be much worse; this wasn’t the worst thing that could happen to me…
2. it is manageable; it was discovered early enuf – I am NOT going to DIE
3. i can/will get thru this

After my diagnosis in 2005, things were quiet/normal even…if not for the bloody shot, i might have forgotten that i had a severe degenrative disease…I used to say, “I am the human, u are the disease – forget u!”…

but then it was April, 2007!!

The date was 5/19/2005…after confirming that it was MS, my doctor was anxious to get me started on treatment.  The earlier it is diagnosed, the earlier the treatment can start and the better off as a patient you are.  How extatic was I to find out that the only available options were shots – not the alcoholic kind; those I could handle (sorta) – no…i had to endure giving myself an injection everyday!  UGH!!! 

True Story:  As a child, i had no problems taking shots…as I got older and smarter, i hated it!  I remember being in Form 4 (5)? (for any non-Trini reading, that was 16 yrs old) one time and having to take a Yellow Fever shot…I held on to my teacher and cried like a BABY while the nurse was administering the shot! 

So now…here is this woman telling me that i would have to read thru the pamphlets on the various treatments and we would talk further about which one i should go on. *Uh…how about none???*  Unfortunately, at the end of it all, i ended up choosing the daily shot.  Of the 4 options available, it had the fewest side effects, it would be the best option if i ever decided to get pregnant and whilst it is a daily shot, there is no mixing/preparing the medication and it comes with an injector so i actually don’t even see the needle till I’m done administering.

Around that time, i realized that i had been displaying/seeing/experiencing symptoms for up to at least 2 years prior.  Back in 2003, my vision just got blurry…i did a slew of tests and noone could find anything wrong.  I remember having a conversation with my personal doctor :-), Dr. Laurence and saying that i couldnt understand y anyone couldn’t find anything wrong because I knew that obviously there was SOMETHING WRONG!!!  Eventually, my vision just corrected itself, and it became a thing in the past; one of those things that just happens and u move on. 

How was I supposed to deal with the fact that I had Multiple Sclerosis; no-one in my family has this, i din’t know anyone with it, i wasn’t sure what the next step was supposed to be…

Multiple Sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord. In MS, the body’s white blood cells attack the protective covering for nerve fibers in the brain tissue called myelin sheath. The myelin sheaths cover nerve fibers as they transmit nerve impulses within the brain.
When a myelin sheath is worn down or destroyed, the nerve fiber becomes exposed. The exposed nerve fiber is less able to transmit nerve impulses. As a result, messages between different parts of the body are not transmitted as effectively. After the myelin is destroyed, scar tissue called sclerosis is left behind in the damaged areas.  these are referred to as lesions or plaques and this is what shows up on the MRI to help with a definitive diagnosis.

I have Relapsing-remitting MS – in other words…my syptoms come and go (as they please) and then stick around for a period of time and then disappear.

The f*cked up thing about MS is that it’s not known what causes it, as a result there is no cure.  It’s a degenerative disease and as such the treatment for it just slows down the progression of the disease.  It presents itself differently to patients, altho there is consistency.  Symptoms tend to fall into 1 or more of these buckets:

• Sensory
• Vision
• Cognitive
• Bladder/Bowel
• Sexual Activity
• Movement
• Fatigue

I have to admit, that of some stories that i’ve read, mine seems to be mild – ish! (so far) I’ve had some things happen…but that is a story for a later post. 

I HAD to schedule the Lumbar Puncture, I s’pose.  I remember singing very loudly in my head to distract myself from the EXTRA LONG needle that was being stuck into my spine.  That year one of my favorite Carnival songs was 3Mile…and that was the song that i sang over and over – I think that Gib was in the room too.  As it turns out, it really wasn’t that bad, i guess singing the song (or something else) actually helped.  The week after however was TORTUROUS!  the thing about the spinal tap is that they are taking a small sample of spinal fluid from ur spinal column.  the procedure actually leaves a hole (the bloody needle is so big) in ur column and if u don’t lie flat for it to heal, the fluid leaks which causes extreme headaches.  Well i am (was) a hero and at that point, i hadn’t told my mgr anything, so i was going to work as if things were normal, when in fact they coulnd’t be any further from.  My head and neck used to feel like they were in a vise grip and eventually i could take it no more.  There is a procedure that can be done called a Blood Patch (they take some of ur own blood and inject that back into ur spine which seals the hole) but of course there are risks involved as it is a surgical procedure.  I didn’t care, i just wanted the pain to stop…

I couldn’t imagine how well that would have worked, but as soon as my blood was injected into my spine, the pain vanished – it was incredible.  That was the first time that I cried since all this started because i actually felt all alone and i couln’t imagine y this was happening to me…

2/3 weeks later, the results of the Lumbar Puncture were in.  That combined with all the other test results confirmed that I had Multiple Sclerosis.