I have been avoiding my own blog for a year and a half. Having convinced myself that my inability to ride my segway was somehow my own fault, I was embarrassed by my own bravado. I realize now that I am STILL blaming myself for MS progression. Never mind that it is an entirely random disease that effects everyone at different rates and with different symptoms. That's what it is for other people. For me, I am in control--or at least that is what I want to believe.
This is the "fear factor" at work that Wheelchair Kamikaze talks about. Keeping the fear at bay is something we all share in the MS community. Coping mechanisms are as diverse as individual symptoms...but denial can do more harm than good. Doesn't mean I have to love transitioning to a wheelchair. Just means I have to accept myself as I am TODAY and do the best I can TODAY. Isn't that what everyone does?
Sure I can still hope for a cure. But living well today is even more important and as Wheelchair Kamikazi says "living well is the best revenge, so live, my friends, live." Thanks Marc.
Friday, September 16, 2011
Tuesday, January 26, 2010
Forging Ahead...damn the torpedoes.
In my last post I left some cryptic references to discrimination while riding my Segway...time to elaborate.
I don't pretend to understand the psychology of this but it's pretty obvious that people--(at least Americans that I have observed--including myself) want disabilities to be obvious if we are to sympathize. How many times have YOU given an evil glare to somebody getting out of a car parked in a "disabled permit required" slot because they "appeared" to be able-bodied? I've done it. I'm learning to resist. Appearances can be deceiving.
Riding a Segway multiplies this tendency exponentially. I have had total strangers in the grocery store grumble directly to me "what gives you the right to ride that thing into this store" or "What's your problem? Are you too lazy to walk?" Really--these are direct quotes...one woman even said to me "God gave you legs, why don't you use them!"
Then there was the time I went to Disney Downtown with my visiting 2-year-old nephew and family so he could play in the lego playground. No one said anything for the first hour we were there but suddenly a manager (riding a Segway) showed up and told me I was not allowed to have a Segway on their property--"too dangerous" he said from his perch on HIS Segway.
At the time I was sitting on a park bench so I suggested that I would not ride it any more until we left the park which would probably be shortly anyway. He replied "'Oh no--you may not ride the Segway out of the park, you must walk it out of the park immediately." I said--"I can't walk." He said--"We will get you a wheelchair." Furious, I got on my Segway and said "What are you going to do, tackle me? We are leaving!" By this time he was accompanied by 2 security guards and another manager, my family had gathered and we were drawing an audience. I started forward with our group slowly heading toward the parking lot. The guards and managers flanked us and escorted us to our car like we were criminals. What started as a fun day at a Disney Park ended on a very sour note.
Then there was the time I tried to go to SeaWorld with the same visiting relatives. This time I called in advance to make sure the Segway would be OK. We arrived, bought our tickets, entered the park and I was immediately escorted to "guest services." There they told me I had to get off the segway and they would loan me a wheelchair, or I could rent a 700lb humongous scooter which I had never driven before and could definitely hurt someone if you drove over their foot or bashed into them from behind. (The Segway weighs only 70lbs and stops automatically if you even come close to bumping anything).
OK so theme parks were out. Grocery stores, other stores, restaurants and bars, were all individual calls--hit or miss--some let me in, others wanted me to park the Segway outside (right...that will work). This had a very negative impact on me--and my husband/caregiver. He would suggest that we not take the Segway as we could be turned away and I often agreed. So I found myself using a wheelchair for most outings other than my immediate neighborhood.
You know what they say..."use it or loose it." The more I sat down, the harder it was to stand up. So I started thinking about selling the Segway. That was about the time of my last post which is why it has taken so long to write this segment...I didn't know how it was going to end.
I guess none of us know how it is going to end but I can pretty much tell you one thing for sure. If you give up, it's going to end sooner than later. Last Spring while riding the Segway in the neighborhood, cutting across a dark lawn (really smart, I know), I hit a tree stump and flew off the Segway over the handle bars. None of my companions were touched but I broke 4 ribs. While healing I could not ride the Segway at all and fear combined with weakness from disuse f my legs combined with all the unpleasant experiences out in public with the Segway almost permanantly sidelined me.
I say "almost."
While looking on Craigs List a couple weeks ago to see how much I could get for a used Segway, I had a cold nervous thought. Am I giving up? That's not a bit like me. Are the jerks and blue meanies of the world going to win? What's going on here? Of course I am weaker! I haven't used "it " for months! Stand up for more than 5 minutes and I'm winded! At this rate I won't be able to even transfer from a wheelchair to the couch before long! GET A GRIP!
So now I am on a mission again. Every day I will stand and walk with the walker--no matter how hard it is. I will do it for 10 minutes, then 20 minutes, then a half hour! In only a week I am already up to half an hour. I will practice stepping up on my Segway and stepping off again, EVERY DAY. And I will ride it again through the neighborhood by Spring. And if someday I can't, it won't be because someone else told me I wasn't allowed to, or because someone said I shouldn't. It will only be because of real disease progression--at which point I will take on the next obstacle...HOORAY!
I don't pretend to understand the psychology of this but it's pretty obvious that people--(at least Americans that I have observed--including myself) want disabilities to be obvious if we are to sympathize. How many times have YOU given an evil glare to somebody getting out of a car parked in a "disabled permit required" slot because they "appeared" to be able-bodied? I've done it. I'm learning to resist. Appearances can be deceiving.
Riding a Segway multiplies this tendency exponentially. I have had total strangers in the grocery store grumble directly to me "what gives you the right to ride that thing into this store" or "What's your problem? Are you too lazy to walk?" Really--these are direct quotes...one woman even said to me "God gave you legs, why don't you use them!"
Then there was the time I went to Disney Downtown with my visiting 2-year-old nephew and family so he could play in the lego playground. No one said anything for the first hour we were there but suddenly a manager (riding a Segway) showed up and told me I was not allowed to have a Segway on their property--"too dangerous" he said from his perch on HIS Segway.
At the time I was sitting on a park bench so I suggested that I would not ride it any more until we left the park which would probably be shortly anyway. He replied "'Oh no--you may not ride the Segway out of the park, you must walk it out of the park immediately." I said--"I can't walk." He said--"We will get you a wheelchair." Furious, I got on my Segway and said "What are you going to do, tackle me? We are leaving!" By this time he was accompanied by 2 security guards and another manager, my family had gathered and we were drawing an audience. I started forward with our group slowly heading toward the parking lot. The guards and managers flanked us and escorted us to our car like we were criminals. What started as a fun day at a Disney Park ended on a very sour note.
Then there was the time I tried to go to SeaWorld with the same visiting relatives. This time I called in advance to make sure the Segway would be OK. We arrived, bought our tickets, entered the park and I was immediately escorted to "guest services." There they told me I had to get off the segway and they would loan me a wheelchair, or I could rent a 700lb humongous scooter which I had never driven before and could definitely hurt someone if you drove over their foot or bashed into them from behind. (The Segway weighs only 70lbs and stops automatically if you even come close to bumping anything).
OK so theme parks were out. Grocery stores, other stores, restaurants and bars, were all individual calls--hit or miss--some let me in, others wanted me to park the Segway outside (right...that will work). This had a very negative impact on me--and my husband/caregiver. He would suggest that we not take the Segway as we could be turned away and I often agreed. So I found myself using a wheelchair for most outings other than my immediate neighborhood.
You know what they say..."use it or loose it." The more I sat down, the harder it was to stand up. So I started thinking about selling the Segway. That was about the time of my last post which is why it has taken so long to write this segment...I didn't know how it was going to end.
I guess none of us know how it is going to end but I can pretty much tell you one thing for sure. If you give up, it's going to end sooner than later. Last Spring while riding the Segway in the neighborhood, cutting across a dark lawn (really smart, I know), I hit a tree stump and flew off the Segway over the handle bars. None of my companions were touched but I broke 4 ribs. While healing I could not ride the Segway at all and fear combined with weakness from disuse f my legs combined with all the unpleasant experiences out in public with the Segway almost permanantly sidelined me.
I say "almost."
While looking on Craigs List a couple weeks ago to see how much I could get for a used Segway, I had a cold nervous thought. Am I giving up? That's not a bit like me. Are the jerks and blue meanies of the world going to win? What's going on here? Of course I am weaker! I haven't used "it " for months! Stand up for more than 5 minutes and I'm winded! At this rate I won't be able to even transfer from a wheelchair to the couch before long! GET A GRIP!
So now I am on a mission again. Every day I will stand and walk with the walker--no matter how hard it is. I will do it for 10 minutes, then 20 minutes, then a half hour! In only a week I am already up to half an hour. I will practice stepping up on my Segway and stepping off again, EVERY DAY. And I will ride it again through the neighborhood by Spring. And if someday I can't, it won't be because someone else told me I wasn't allowed to, or because someone said I shouldn't. It will only be because of real disease progression--at which point I will take on the next obstacle...HOORAY!
Friday, October 2, 2009
#7 "The Truth about Mobility"
It IS everything it's cracked up to be! Getting from point A to point B is a huge part of life. Most people don't really think about it at all (unless you're 92 and someone is threatening to take your license away from you). But for the rest of us, it's just a question of which transportation to use.
Feet: great for your heart, cheap, no need to find the keys, easy to daydream or browse along the way, really good for getting around your house and yard or over to the neighbor's for whatever.
Bike: fun, also cheap, refreshing if it's a nice day, good for the environment.
Car: Ok admit it. Everyone should own a car. (Ok ok. Maybe not in NYC or SanFran but just about everywhere else.) Go to work, pick up the dry cleaning, groceries, meet friends for..., and maybe best of all--shop! "When the going gets tough, the tough go shopping."
So when my feet wouldn't take me, the bike tipped over and the State wouldn't renew my license, I developed a serious case of stay at home blues. One day, at an MS Society annual meeting, a woman sitting at my table stood, stepped on her Segway, and in a flash left the room. EUREKA, I thought. I gotta have one of those things! And I will be forever in Wendy's debt for showing it to me. Everyone with MS should have one! This is AWESOME! Three short weeks later I was proudly zooming around my neighborhood on my "man-magnet."
Advice to all women (physically challenged or not): Want to attract male attention? Buy a Segway. Guys are drawn to them like big flat-screen TVs.
For more than 5 years it has taken me on all sorts of adventures including to the mountains in Mexico where I bumped along narrow sidewalks or cobblestone streets to the astonishment of onlookers (including the local police who took several days to decide it did not belong on sidewalks and banished me to the streets.)
But being a trail blazer has challenges. Many officials in gov't and business prefer the status quo. So within weeks of discovering the segway, I also discovered the slimy underbelly of discrimination.
"Discrimination. Discrimination is the active denial of desired goals from a category of persons. A category can be based on sex, ethnicity, nationality, religion, language, or class. More recently, disadvantaged groups now also include those based on gender, age, and physical disabilities."
Who would have thought!?
Wouldn't everyone be happy to see a disabled person cleverly disguised as able-bodied? Happily going about their business? Hmmmm. Maybe not.
More pics from San Miguel de Allende, Mexico--
beautiful but not too accessible. Some days I stayed behind in our gorgeous rented house while the rest went out exploring. Even with the Segway, hills and cobblestones can be a bit tiring--but oh so much fun and oh so worth the trip!
Monday, September 21, 2009
#6 "Better Living through Chemistry"
I grew up in the '50s. I believed in science--still do. I fact I am such a believer in science that I wait excitedly for the next great discovery--the cure for cancer, diabetes, alzheimers and yes MS will be discovered soon. But soon is a relative term...if you are sitting in the back seat of the family car waiting to arrive at Grandma's house...soon can seem like a very long time.
You get the picture. It's simply not soon enough. So while I was waiting around for the cure to materialize--soon--I opted for the next best thing: slow it down! That way when they find a cure, not too much damage will be done.
But before I could start any treatment, I had to confirm I really had MS which meant a lumbar puncture--yup--the dreaded spinal tap. Now most people kind of sail through this process but a select few have a really nasty complication called a "spinal fluid leak" which causes a "REALLY BAD" headache.
[If you're squeemish, skip this paragraph--but if there is a lumbar puncture in your future, I would recommend reading it. Imagine you are fine if you are lying flat on your back. But if you lift your head up even just a tiny bit, it feels like some one has meat hooks in your brain and is pulling you back to flat. Not really an experience I would recommend--especially since it lasts about 3 weeks! There are things you can do to avoid it or shorten the duration, but you would have to know what they are and I did not. First--don't drive to another city to have a puncture done on a Saturday by someone in training ("how far in do I go? oops"). Second--don't listen when they say you can sit up and drive 3 hours home within a half hour of the procedure (remember it's Sat. and they have somewhere else they want to be)--but you don't want to be going anywhere until that little hole in your spinal column has sealed itself up. That might take holding still for a couple hours. If you do get the headache it will be very soon after the procedure--demand a blood patch--a tiny drop of your own blood which seals the leak and prevents the 3 week ordeal--better yet -- ask about the blood patch in advance. Forewarned is forearmed.]
So with the MS diagnosis confirmed, it was now time to start stopping it. What kind of MS is it and what treatment should I try? Docs kind of leave that up to you these days.
There are several forms of MS but the 2 biggest distinctions are that symptoms come and go-- that's relasing/remitting MS (RRMS) or symptoms come and stay and accumulate-- that's progressive MS. There are lot's of sub-categories and nuances but for this story, that's enough.
Since 85% of people with MS have relapsing remitting (RRMS), there is a higher concentration of effort being put into fixing that form of MS. Several new drugs have been developed to slow down the number of relapses (presentations of new symptoms) because relapses can leave behind some disability even after they "remit" or go away. So the theory is, avoid getting to the progressive phase of the disease at all. And since there are no drugs out there to stop the progressive forms of the disease like "Pimary Progressive MS (PPMS - progressing disability from the beginning) or secondary progressive MS (SPMS - which is what RRMS turns into if left untreated), what would you want to call your disease if no one was really sure? DUH. RRMS!
First up: Copaxone.
One little shot a day. Doesn't hurt a bit--going in--hurts like a crazy for 15 minute afterward--but hey--no pain no gain--right? Still I got new lesions on my MRI scans and new symptoms--just a little at a time--but they didn't go away. Like a little more unbalanced, a little weaker, a little bit dizzy. a little tingle here and there. So after 4 years, my neuro--a new one--said lets try Rebif. It is new and it might just work better.
Rebif--an interferon.
This is great I thought--shots only three days a week--different side effects and I was really tired of the every single day "burn" option. How bad can it be? Well let's see--I felt like I had the flu or a bad hang over 3 mornings a week. The shot hurt going in so I became increasingly reluctant to jab myself. And my skin was getting "tough" from repeated shots in the same place (there are only so many places on one body). To top it off, after 3 years with Rebif, added to 4 years on Copaxone, I had zero relapses and only one new brain lesion. I should be the poster child for the drug companies! By their measure of stopping relapses and brain lesions, I was perfect.
But I wasn't perfect. I could no longer grasp a pencil well enough to draw (I am an artist, remember). I could no longer walk across even a small room unaided. If I stood for more than 5 minutes I was completely exhausted. My husband had talked me into giving up driving (no sense in killing someone just because you need some groceries and I was having trouble gripping the wheel--let alone stepping on the brake--Yikes).
It was time to have a heart to heart--I will rephrase that--an unemotional and honest brain to brain discussion with my neurologist at our next meeting. He was apparently reaching the same conclusion because when I "walked" in, we both said simultaneously--"we need to talk". Really, we did. Yup. PPMS. Or at best SPMS. Only 7 years of giving myself useless expensive drugs with dangerous and unknown side effects. "Denial is not a river in Egypt" is probably a fitting expression.
So no more drugs. At least none labeled as a cure or a preventative.
So about my faith in science... it really hasn't diminished. I still think science will cure MS "soon." Stem cell research is on the move again after an 8 year roadblock. Wait a minute! Are those the same 8 years I spent enriching the pharmaceutical companies while stem cell research lagged behind? I resist anger, it sucks up energy... and I need energy to write this blog...
You get the picture. It's simply not soon enough. So while I was waiting around for the cure to materialize--soon--I opted for the next best thing: slow it down! That way when they find a cure, not too much damage will be done.
But before I could start any treatment, I had to confirm I really had MS which meant a lumbar puncture--yup--the dreaded spinal tap. Now most people kind of sail through this process but a select few have a really nasty complication called a "spinal fluid leak" which causes a "REALLY BAD" headache.
[If you're squeemish, skip this paragraph--but if there is a lumbar puncture in your future, I would recommend reading it. Imagine you are fine if you are lying flat on your back. But if you lift your head up even just a tiny bit, it feels like some one has meat hooks in your brain and is pulling you back to flat. Not really an experience I would recommend--especially since it lasts about 3 weeks! There are things you can do to avoid it or shorten the duration, but you would have to know what they are and I did not. First--don't drive to another city to have a puncture done on a Saturday by someone in training ("how far in do I go? oops"). Second--don't listen when they say you can sit up and drive 3 hours home within a half hour of the procedure (remember it's Sat. and they have somewhere else they want to be)--but you don't want to be going anywhere until that little hole in your spinal column has sealed itself up. That might take holding still for a couple hours. If you do get the headache it will be very soon after the procedure--demand a blood patch--a tiny drop of your own blood which seals the leak and prevents the 3 week ordeal--better yet -- ask about the blood patch in advance. Forewarned is forearmed.]
So with the MS diagnosis confirmed, it was now time to start stopping it. What kind of MS is it and what treatment should I try? Docs kind of leave that up to you these days.
There are several forms of MS but the 2 biggest distinctions are that symptoms come and go-- that's relasing/remitting MS (RRMS) or symptoms come and stay and accumulate-- that's progressive MS. There are lot's of sub-categories and nuances but for this story, that's enough.
Since 85% of people with MS have relapsing remitting (RRMS), there is a higher concentration of effort being put into fixing that form of MS. Several new drugs have been developed to slow down the number of relapses (presentations of new symptoms) because relapses can leave behind some disability even after they "remit" or go away. So the theory is, avoid getting to the progressive phase of the disease at all. And since there are no drugs out there to stop the progressive forms of the disease like "Pimary Progressive MS (PPMS - progressing disability from the beginning) or secondary progressive MS (SPMS - which is what RRMS turns into if left untreated), what would you want to call your disease if no one was really sure? DUH. RRMS!
First up: Copaxone.
One little shot a day. Doesn't hurt a bit--going in--hurts like a crazy for 15 minute afterward--but hey--no pain no gain--right? Still I got new lesions on my MRI scans and new symptoms--just a little at a time--but they didn't go away. Like a little more unbalanced, a little weaker, a little bit dizzy. a little tingle here and there. So after 4 years, my neuro--a new one--said lets try Rebif. It is new and it might just work better.
Rebif--an interferon.
This is great I thought--shots only three days a week--different side effects and I was really tired of the every single day "burn" option. How bad can it be? Well let's see--I felt like I had the flu or a bad hang over 3 mornings a week. The shot hurt going in so I became increasingly reluctant to jab myself. And my skin was getting "tough" from repeated shots in the same place (there are only so many places on one body). To top it off, after 3 years with Rebif, added to 4 years on Copaxone, I had zero relapses and only one new brain lesion. I should be the poster child for the drug companies! By their measure of stopping relapses and brain lesions, I was perfect.
But I wasn't perfect. I could no longer grasp a pencil well enough to draw (I am an artist, remember). I could no longer walk across even a small room unaided. If I stood for more than 5 minutes I was completely exhausted. My husband had talked me into giving up driving (no sense in killing someone just because you need some groceries and I was having trouble gripping the wheel--let alone stepping on the brake--Yikes).
It was time to have a heart to heart--I will rephrase that--an unemotional and honest brain to brain discussion with my neurologist at our next meeting. He was apparently reaching the same conclusion because when I "walked" in, we both said simultaneously--"we need to talk". Really, we did. Yup. PPMS. Or at best SPMS. Only 7 years of giving myself useless expensive drugs with dangerous and unknown side effects. "Denial is not a river in Egypt" is probably a fitting expression.
So no more drugs. At least none labeled as a cure or a preventative.
So about my faith in science... it really hasn't diminished. I still think science will cure MS "soon." Stem cell research is on the move again after an 8 year roadblock. Wait a minute! Are those the same 8 years I spent enriching the pharmaceutical companies while stem cell research lagged behind? I resist anger, it sucks up energy... and I need energy to write this blog...
Friday, September 18, 2009
#5 Did ads and ethics make me a recluse?
The puritan ethics my father taught me--hard work, tenacity, a stiff upper lip and keeping your problems to yourself -- are all important tools to use in navigating through life (especially in school and work).
Likewise, there are some great motivational advertising messages that can serve you well, like "just do it", "go for the gusto", or "be all that you can be" and "it takes a licking and keeps on ticking". (Remember "better living through chemistry"? --but that's another story.)
Combine these messages with MS and you've got the perfect formula for disaster.
With those principles in place, I was not going to use any assistance to do anything until it beat me over the head.
First: The Cane. Someone gave me a cane and I was positively annoyed. I gave it to a friend's mother. Meanwhile I made regular embarrassing not to mention painful, dives earthward-- like in the middle of a crosswalk with the light turning red or stepping out of a car in front of a crowd at valet parking. Still too proud for a cane...let's see how ridiculous/dangerous would the trip need to be to concede the need for assistance? How about diving sideways into glass shelves filled with hair products at the hair dresser--taking out the shelves, a few patrons, and hundreds of bottles of shampoo? Would that be enough?
Ok ok--I will use a cane, but only if it's cute.
Next up: the walker. Oh no not me...only little old ladies use those things. If I can't walk with just a cane, I'll wall-walked around my own house. But you know what they say about accidents in the home. I crashed into coffee tables, bloodied up the patio, almost killed my dog who was breaking my fall, fell over backwards out of the shower (that prompted me to install a shower bar--what would it take for a walker?). How about 3 hours in the emergency room with 2 broken ribs from wall walking while carrying a glass of water (it takes 2 hands to successfully "wall walk").
Ok ok--I will use a walker--but only at home--I certainly wouldn't want anyone to think I'm "handicapped"--drunk maybe--while staggering around--or terminally clumsy -- or possibly a recluse--but not the dreaded disabled!
So now I was stubbornly stuck at home. I love my home--but not 24/7...
Likewise, there are some great motivational advertising messages that can serve you well, like "just do it", "go for the gusto", or "be all that you can be" and "it takes a licking and keeps on ticking". (Remember "better living through chemistry"? --but that's another story.)
Combine these messages with MS and you've got the perfect formula for disaster.
With those principles in place, I was not going to use any assistance to do anything until it beat me over the head.
First: The Cane. Someone gave me a cane and I was positively annoyed. I gave it to a friend's mother. Meanwhile I made regular embarrassing not to mention painful, dives earthward-- like in the middle of a crosswalk with the light turning red or stepping out of a car in front of a crowd at valet parking. Still too proud for a cane...let's see how ridiculous/dangerous would the trip need to be to concede the need for assistance? How about diving sideways into glass shelves filled with hair products at the hair dresser--taking out the shelves, a few patrons, and hundreds of bottles of shampoo? Would that be enough?
Ok ok--I will use a cane, but only if it's cute.
Next up: the walker. Oh no not me...only little old ladies use those things. If I can't walk with just a cane, I'll wall-walked around my own house. But you know what they say about accidents in the home. I crashed into coffee tables, bloodied up the patio, almost killed my dog who was breaking my fall, fell over backwards out of the shower (that prompted me to install a shower bar--what would it take for a walker?). How about 3 hours in the emergency room with 2 broken ribs from wall walking while carrying a glass of water (it takes 2 hands to successfully "wall walk").
Ok ok--I will use a walker--but only at home--I certainly wouldn't want anyone to think I'm "handicapped"--drunk maybe--while staggering around--or terminally clumsy -- or possibly a recluse--but not the dreaded disabled!
So now I was stubbornly stuck at home. I love my home--but not 24/7...
Monday, September 14, 2009
#4 The Holy Grail of Medical Diagnostics
They say knowledge is power and I for one have an inquiring mind. If Mayo Clinic could provide the answer...I was ready to try again.
It takes persistence to get an appointment at(dim the lights, roll the music, we are in the presence of greatness) Mayo Clinic in Jacksonville...months of persistence. That's a really good fit if you have a slow moving mystery to solve. I wouldn't recommend it for a sharp pain where your appendix lives. But when I did finally get my moment in the fall of '99, I wasn't disappointed. They start at the beginning (no previous tests or theories are permitted) with a GP. From there tests are ordered as they see fit, while they rule out one possibility after another. Bottom line...after just 5 days, 6 doctors, and lots of machines that went ping or gave you a torture level electric shock every 6 inches all over your body (my personal favorite) and many interviews, I sat alone in an office while the big brains behind the scenes discussed what to tell me. "Please don't let it be a brain tumor" I silently pleaded once again with who ever might be listening.
At last 2 neurologists came into the room together to pronounce that I had Multiple Sclerosis. Whew! What a RELIEF! MS. OK, I can cope with that. My grandpa had MS but he was old and he died of a heart attack. I would live! Hoorey!
I was actually pretty happy. A little nervous about how to break the news to my husband, family and friends without them freaking out-- but not really very worried about the disease itself. After all--this was the new millenium--now that we knew, surely we could stop this thing in it's tracks-- right then-- so it wouldn't get any worse. And the cure must be right around the corner, right? After all, my grandfather had it. They cured chicken pox, Diphtheria, influenza, Measles, whooping cough, mumps, rubella, polio...how tough could this MS be?
I was about to find out.
It takes persistence to get an appointment at(dim the lights, roll the music, we are in the presence of greatness) Mayo Clinic in Jacksonville...months of persistence. That's a really good fit if you have a slow moving mystery to solve. I wouldn't recommend it for a sharp pain where your appendix lives. But when I did finally get my moment in the fall of '99, I wasn't disappointed. They start at the beginning (no previous tests or theories are permitted) with a GP. From there tests are ordered as they see fit, while they rule out one possibility after another. Bottom line...after just 5 days, 6 doctors, and lots of machines that went ping or gave you a torture level electric shock every 6 inches all over your body (my personal favorite) and many interviews, I sat alone in an office while the big brains behind the scenes discussed what to tell me. "Please don't let it be a brain tumor" I silently pleaded once again with who ever might be listening.
At last 2 neurologists came into the room together to pronounce that I had Multiple Sclerosis. Whew! What a RELIEF! MS. OK, I can cope with that. My grandpa had MS but he was old and he died of a heart attack. I would live! Hoorey!
I was actually pretty happy. A little nervous about how to break the news to my husband, family and friends without them freaking out-- but not really very worried about the disease itself. After all--this was the new millenium--now that we knew, surely we could stop this thing in it's tracks-- right then-- so it wouldn't get any worse. And the cure must be right around the corner, right? After all, my grandfather had it. They cured chicken pox, Diphtheria, influenza, Measles, whooping cough, mumps, rubella, polio...how tough could this MS be?
I was about to find out.
Sunday, September 13, 2009
#3 "I meant to do that" Excuse Making 101
I am really quick on my feet (pun intended) when it comes to excuses. It's a skill I honed as a teenager. Mom: 'What is this pack of cigarettes doing in your purse?" Me: "They are not mine! Judy asked me to keep them so her Mom wouldn't find them." Mom: "Why does the car smell like smoke?" Me: "Some boys were leaning in the window at the drive-in--I think one of them smoked."
I made excuses with such conviction, even I almost believed them. So falling down (a lot), dropping things, and any number of other odd physical happenings were easily dismissed with excuses. If I went jogging and got blurred vision after only a mile, I wasn't drinking enough water. If I tripped and fell over a line in the sidewalk, I wasn't paying attention. If I woke up in the middle of the night with the room spinning around... well that wasn't quite as easy to dismiss, but I did. Hey it was gone in the morning, why dwell on it. If my foot went to sleep (that tingling sensation) and wouldn't wake up...oh well... must be poor circulation...and it doesn't hurt...it will go away eventually...and if it doesn't --so what.
And if I was careful, no one would even notice the limp--unless I had a glass of wine in my hand. I was at an art opening one evening--had just arrived minutes before and picked up a glass of wine. I walked by an acquaintance who said to me, "don't you think you've had enough, Meredy?--you're staggering." --really--he said that!
That was pretty good evidence that I wasn't finished with diagnosing the limp. So in March, 1999 at an Easter Brunch Party, my cousin Janet said enough is enough. Go to Mayo Clinic in Jacksonville and find out whats going on. It had been more than 6 years spent in excuses and denial...it was time...I was 50 years old.
I made excuses with such conviction, even I almost believed them. So falling down (a lot), dropping things, and any number of other odd physical happenings were easily dismissed with excuses. If I went jogging and got blurred vision after only a mile, I wasn't drinking enough water. If I tripped and fell over a line in the sidewalk, I wasn't paying attention. If I woke up in the middle of the night with the room spinning around... well that wasn't quite as easy to dismiss, but I did. Hey it was gone in the morning, why dwell on it. If my foot went to sleep (that tingling sensation) and wouldn't wake up...oh well... must be poor circulation...and it doesn't hurt...it will go away eventually...and if it doesn't --so what.
And if I was careful, no one would even notice the limp--unless I had a glass of wine in my hand. I was at an art opening one evening--had just arrived minutes before and picked up a glass of wine. I walked by an acquaintance who said to me, "don't you think you've had enough, Meredy?--you're staggering." --really--he said that!
That was pretty good evidence that I wasn't finished with diagnosing the limp. So in March, 1999 at an Easter Brunch Party, my cousin Janet said enough is enough. Go to Mayo Clinic in Jacksonville and find out whats going on. It had been more than 6 years spent in excuses and denial...it was time...I was 50 years old.
Subscribe to:
Posts (Atom)
