SEEING IS BELIEVING

The Human Race in general has a tendency to be somewhat cold, hateful, impatient, and least of all inconsiderate to those of us with disabilities.   I for one have had many experiences that have made my blood boil at first then the tears flow uncontrollably at how cruel the world can be because of this crazy disease I didn’t ask for. Taking it in stride isn’t an option when it happens repeatedly and you wonder where in the world people get their nerve.

One of my first experiences, years ago, was when I first got my handicapped sticker and was at the grocery store, alone of course. I will never forget it because, (A) I never thought I would have to use one of these things so I was already feeling a little helpless and (B) I was in so much pain from spasms the night before and didn’t have the meds I do now to control them so…

I pulled in to the HC spot, one of about 8 at the time, got out and started to walk to the door. An elderly man, about 75 approached me and said “Don’t look like you sick to me”. It caught me off guard and being from the south I thought I had misunderstood him so I said “excuse me?” He said it again except this time with more callousness and cruelty like he was trying to strike a nerve. Being newly diagnosed and what I like to call in my “pre-prozac” days, I stuttered, “well I am”. He just mumbled some southern mumbo-jumbo and into the store he went. I was so flustered, trembling, shaking, then tearing up. After all, I hadn’t asked for this stupid disease! I didn’t want this HC sticker anymore than this man wanted me to have it! I was so upset then the upset turned into madness. Being the little (5’2 ; 130lb) spitfire that I am, I went into that store, found that old man, and told him off in front of God and everybody! I’m pretty sure he will think twice before mumbling anything like that again. 

That wasn’t the last time it happened and its unfortunate people do not understand about invisible illnesses. They are real. They are painful. They are debilitating.  And they are disabling. There have been many times I’ve wished you could see MS. Even the support from family members has been minimal because, again, they can’t see it so to them, it’s not there. 

As our disease progresses and we are forced to use aids to help in walking, standing, etc. I’ve noticed people are far more understanding, patient and considerate. I started using a cane a couple years ago due to severe balance issues and falling. That was a big step for me as I’m sure it is for everyone. The day I bought my first cane I literally had a melt-down. It was like I was giving up some to the MonSter. But now I am grateful for each day that I have and have noticed people are far more patient and caring since they can actually see I need help in getting around.  Its just human nature I guess. You have to see it to believe it and you have to believe it to understand it. 

MIGRAINES + MS = 1 UNHAPPY CAMPER!!!!

If you’ve ever had a "Migraine" then you will know exactly what I’m talking about! Ah, the nausea, bright lights, vertigo, pain on one side of your head maybe in your eye...sound familiar?? No I didn’t describe a bad flare day but now that you mention it add some burning feet, pain in your arms, legs that weigh 40lbs each, UTIs and you got yourself a really fun day! 

For forty years, I’ve experienced the “joy” of all the above. Back in the day, before all the modern medicines, you went into a dark room with an ice pack and a trash can, closed the door and wasn’t seen or heard from until it passed. I think I spent most of my teen years in my room. All we had was Bayer Aspirin. Imagine that.  I was told it was hereditary, hormonal, growing pains, Iron deficiency, Devil Possession (because I listened to Pink Floyd & AC/DC) anything but the truth. There were no neurologists, no CT scans or MRI machines, so we suffered in silence.

As time went on and I grew up, married and had children, got jobs that I could not afford to be absent from, I started researching on my own why I was sick all the time. I went to every type Dr. available to try and help me. For years I made it my quest in life to “fix” my headache problem. I saw chiropractors, had acupuncture, reflexology, massage therapy, Indian Guru, the list goes on.  All in all, over 12 specialist in the “Migraine” field never gave me a definitive answer. They all just concluded I had “Migraines”. DUH

Now during this time, I didn’t mention my other symptoms. When I was 8 years old, I had a GranMal Seizure. Scariest thing a little kid from Georgia has ever gone thru I promise! Also, I would tell my mom that my feet burned and my legs went numb a lot. You guessed it. Growing pains. These symptoms persisted all thru adulthood and I wondered when I was going to quit growing? When I went to my first neurologist I think it was early 80’s I explained ALL this to him. Still no MRI but I did get a complete neurological exam and it was fine. Diagnosis: Migraines

The 90’s were my friend. GlaxcoSmithKline came out with a drug called “IMITREX” a new migraine medicine and my present neuro let me try it. OMG!! It was wonderful. I truly believe it saved my life. Those of you that suffer know what I mean because they take over your world. I was having 6 a month at least, the kind that last 4days each.  I was suicidal no doubt about it. So to them I am grateful beyond words. My faith was renewed headaches better, but numbness, burning, tremors, and now severe neck pain and blurry eyes had entered the picture. I saw 4 neurologists that all said possible MS but I called BS.  So back to the neuro I went, except this time, I chose a different one.  After a gazillion tests, (my favorite being the spinal tap), she DX me officially with MS on Nov 16, 2004. 

Looking at my history, and all my symptoms, she concluded the migraines I had suffered as a child were one of the first warning signs that I had MS. How sad we didn’t have the technology back then to do something. And even sadder the symptoms were ignored. They are controlled now by meds and I see changes every day in the development of new meds for migraines. My advice would be to discuss ALL your symptoms with your doctor so he/she can get a clear picture of how to better treat you. Oh, and I still listen to Pink Floyd and AC/DC every day.