Taking a new direction

Okay, when is started this, i was sure i could just blog about my MS and have plenty to say.
But the truth of the matter is that most days, I don't thinka bout my MS. oh, sure , my ears perk up when I hear someone talking about multiple sclerosis to see if maybe they're saying soemthing I don't know, but the reality is, that rarely happens.
Today, I thought about it once when I grabbed the side of the porch to help ease my way down the steps and once when the local news had a questions from a viewer about whether a person with MS should get a flu shot....ummm...let me think about that for a second. Yup, get a flu shot. Already on my list of things to do. Don't want to....they usually make my arm hurt for a couple days, but I have a disease of the immune system that gets worse when my immune system has to work. It really does seem like a no-brainer.
But I suppose not everyone takes the time to understand what makes their MS worse and how to avoid relapses. Mostly, I'm just so damn thrilled that I don't have progressive MS that I try to ignore that I have it at all.
If I can ignore it, it will ignore me, right?
Well, can't blame a girl for trying.
Actually, I know that I am in the midst of a minor relapse right now. No new symptoms, just the old ones getting worse. My best friend noticed it the other day. I thought I was hiding it pretty well. Shows what I know.
I have, however, decided that I am done letting the MS rule my life. I'm going back to work, preferably full time in a real job, not just freelancing. Don't get me wrong, I love freelancing, but I have found that when I have to crank out web articles for a living, I have no desire at the end of the day to write for pleasure and I can't become a world famous author if I don't write the darn book.
Sure, I have it all written in my head, but we really wouldn't want people trying to read that, would we?
So wish me luck in my journeys back to the world of real life employment and look for me at a newspaper near you. I'll be the girl hobbling after the story.

Heat Waves and MS

Most of the central United States is in the midst of a killer heat wave and my region is certainly no different. Actually, we had a cold front come through in the alst few days so temps have only been in the high 90s...only!
I stand by my earlier post that it is the difference in temperatures that really do me in, but when the outdoor heat index is over 100 degrees, it doesn't take much for that heat to kick my butt.
Sunday I went grocery shopping and the total time spent outside of air conditioning was maybe five minutes between the walk to the car and unloading groceries, but it was enough to exhaust me for the rest of the day. And I know that one of the most important things about this kind of heat is to stay hydrated, but it wasn't until late yesterday afternoon that I realized the fog I was in was due to the fact that I wasn't drinking enough water.
I had the misconception that since I was staying in out of the heat that I didn't need to be increasing my water consumption. WRONG! I forgot to take into accunt that my air conditioner can only do so much agaisnt the humidity and even those short jaunts outside suck water out of you like nobody's business.
Today it's a bit cooler. I think the high is in the low 90s and the humidity seems to be down. It didn't feel like an oven as soon as I walked out the door. But I did notice that after 15 minutes outside of my climate controlled house, the heat headache started up full throttle. It may be cooler today, ut the heat is still a killer.
And, I guess I'm one of the lucky ones. I have air conditioning and can afford to run it. Better yet I live in a community that recognizes the dangers of excessive ehat and has designated cooling centers for people who might not have the air conditioning they need.
Still I wonder if we couldn't be doing more to get the elderly and infirmed to cooler places. Yesterday there were deaths in St. Louis, Missouri, (about 2 hours from me) and Louisville, KY (3-4 hours away) from the heat. It makes me wonder why in a land as wealthy and as prosperous as the United States we still have these things happen. Why were these people not better taken care of? And more importantly, does anyone even care?

The Weather Man was right...

So I ahd to go to the store today and I had an appointment with my counselor so, I was out in the hottest part of the day...and the weather man was right. It was downright miserable.
My car was scorching hot when I got back in it after a 45 minute counseling session and I was miserable. I think the heat index pushed the temperature well above 100 degrees today and the severe storms are supposed to start any minute.
And, like any good MS patient, the heat nearly drained me when I was out in it.
But I confirmed what I ahd been thinking anyway...it's actually the changing of temperatures that really kills me. going from cool to hotter than hell and backa gain was the real killer. Within jsut a few minutes of returning to my icebox of 74 degrees in the air conditioning, I was shivering and wante d alanket.
Wouldn't it be fun if you could be in charge of the research for sure to a disease you suffer from?
I am convinced based on my own experience that changing temperatures make it worse and they say the great majority of MS sufferers are from Northern European descent and have lived in regions relatively far from the equator...so I want a study on the human nervous system tos ee the effects of the four seasons...My new pain-in-the-ass theory is that spring and fall did this to me...
I'm joking of course but I do know that changing temp[s make it worse....I wonder if science knows that too...

A freak in the MS world...

Everything I've read about MS tells me that it is important to keep my core body temperature down, that too hot short circuits the nerves and can bring on relapses. So, I should be struggling right now with the summer heat.
The weather man said yesterday it will feel like August this week which means temps in the 90s and humid, humid, humid. And, I sit here typing with a blanket around my shoulders. The air condtiioning is set at 74 both to keep my housemates comfy and to conserve energy, but I am downright cold--have been most fo the summer.
I went to the movie theater last night and took a jacket and still missed some of the movie, trying to keep the tip of my nose warm.
I have concluded that I am an MS freak...I don't quite fit the mold of what the disease is supposed to do. And, I'm okay with that.
I think really it's the weirdest of things. The summer that I was misdiagnosed and had the first truly annoying symptons, I worked in a factory where my office was air conditioned, but I had to go out into the factory regularly which was not air conditioned. In mid-summer, that could mean literally a 40 degree (Farenheit) temperature difference. I wonder now if that didn't contribtue to the trigger relapse?
This summer, I am chilly in the house and when I go outside, I am mostly comfortable, until the temperature reaches 90 degrees. Even then, I deal with it better than my husband and my roommate do. Still, I notice that although the heat doesn't bother me as much as it does others, I get weak very quickly when I am out it in.
What I really need is a plce that is 80 degrees in the daytime and 50 degrees at night year round...does such a place exist?

And now for something completely different....

I'm not the hugest of Monty Python fans, but I do really love that phrase...it seems so appropriate so often.
Until now, all I've talkedabout is my MS and this is sort of related , but mostly not. In the days before I ever got sick, I was a reporter. That's what my training and my passion are. But reporters do a lot of things I am not really certain I could do these days, like walk for hours or spend hours at a hot county fair covering the livestock contests.
So, these days I freelance. But the news is still in my blood and an infinite part of who I am.
That's why I was a little surprised that no one at the Fourth of July party we attended seemed too concerned about the terrorist attempts in London last week. The closest I got to a response when trying to discuss it was that London is used to car bombs.
What?!!!
I adore some of the people who were at this party, but what?! The mentality if its not happening here or to me so why worry about it makes me understand a lot better how things like Nazi Germany happened. Terrorists tried to attack nightclubs in London and an airport in Glasgow. Doesn't that seem like it should be attention worthy?
I'm not a panic-striken American. I know the odds of being directly touched by a terror attack (as long as I don't travel abroad) are very slim, but I worry about these people who seem to have to care for what's happening in the rest of the world.
I read a book called "Bad News" written by journalists about the failings of journalists and the modern entertainews to warn Americans about the growing resentment we faced worldwide and the potential for terrorist attacks. Teh author said he and fellow international correspondents failed in their duty as journalists because they didn't make sure the story got to middle America.
Now, I suspect it wouldn't have mattered. No one would have paid attention anyway. It frightens me that Americans are more concerned about whether Scooter Libby goes to jail for allegedly lying under oath than whether medical professionals here might be planning the next terrorist attack.
But, I guess, like everyone else, I can just stick my head in the sand until it happens.

Progress, progress...?

After Halloween I could at least admit that I had MS, but now it was time to figure out my new medication. My doctor discussed the options with me and since I hate needles and wanted to avoid shots as much as possible we decided on Avonex.
Now, if you deal with MS, you know very well that all the treatments involve some injections. Avonex only requires an injection once a week, so it sounded like the best of the options. And, for awhile it was. Sort of.
The first thing that the folks at Biogen,makers of Avonex do for you is to send you a month-long supply of the drug. they do this while working with your insurance, or lack thereof, to figure out how to get you your medicine on a timely basis. Though the drug eventually caused me too many problems and I had to discontinue it, Biogen was a good company to deal with. They provide discounted or in my case, free, drugs for people based on their income. The only cost to me was shipping because it had to be shipped overnight so it could be kept refrigerated. That saved me almost $12,000 a year, since a month supply of Avonex costs about $1000. I paid $100 for the year's supply, $25 every three months for shipping.
The next nice thing Biogen does is contact your local home health care agency and have them come out to teach you how to give yourself injections. They recommend giving Avonex in the arms and thighs, or buttocks, rotating the injection site. A pharmacist with Biogen recommended always using the buttocks or thighs because the bicep can be too small to let the medicine disperse right. All I know is that when I used my arms as injections sites, I could not lift that armfor the next two days, and I'm not a small girl.
the nice nurse from our local home health agency came to my work and tried to show me how to give my self injections. I cut my hand trying to get the cover off theneedle, I was shaking so badly. Instead, I learned to mix the medicine, load the needle and call a friend for the injection. I worked in a doctor's office, so I got one of the technicians to give me my shot each week. It meant I got my shot at work, but it meant I didn't have to do it myself.
Right away, the Avonex caused little problems. I was sick as a dog about two hours after the injection. I developed migraine headaches for the first time in my life and I had a semi-constant kidney infection. After a year on it, I developeda tiny cataract in my left eye that my ophthalmologist said was most likely a drug reaction. The injection site was sore, especially if I forgot to warm the medication to room temperature before getting my injection, but most of it I learned to control.
The migraines disappaited a great deal after the first three months on the medication. And, I could control the remaining ill feelings on shot day by eating extremely light, low-fat meals and taking over the counter pain relievers and drinking serious amunts of caffeine about an hour before my shot. Still, I would often end up in bed about four hours after the shot and be done for the day.
As long as I was consistent with the shot day and time, the symptoms were minimized. If I had to vary my dosing schedule for whatever reason, I got hit hard with side effects. Still, the avonex worked. For two years now, I have had no relapses or progression in my MS. But last month I had to get off the Avonex.
I was suddenly struck with mind-numbing clinical depression and my liver function tests started showing depressed liver functions. My white blood cell count fell and so did my hemoglobin. My generic doctor and my neurologist agreed. Time to get off the Avonex. My blood chemistry has almost returned to normal and the depression has faded, but I worry about the next step in my medication. I've heard good things about copaxone, but I dread the idea of daily shots. Tysabri scare the bejesus out of me and well, I guess I'll just wait and see what else the doctor recommends.
In totally unrelated news, Happy Independence Day! I hope that soemday we will be able to celebrate national holidays again without an increase in security, but in the meantime, thanks to the Brits, who once again foiled the enemy. Some day, I am actually going to talk about stuff other than MS on here....I think I can now as you are basically up to date on the MS.

Coming to terms....

You'd be surprised how long it takes to come to terms with a diagnosis like multiple sclerosis. I was diagnosed in mid-July, but I decided to only share with a few of my closest friends and the co-workers who had been with me through the disagnosis.
So, then we got invited to this Halloween party. We went with a bunch of frineds, including some who were not privy to my diagnosis. Since I had long before been the one to volunteer to be the designated driver at these types of events, no one was terribly surprised that I wasn't drinking. I had mentioned off-handedly at some other parties that I wasn't sure how alcohol would mix with my new medications, but some people hadn't paid attention.
I feel really badly now that I treated him so meanly when my friend Bobert tried to tease me about tripping up the stairs, but at that moment, I snapped.
I was wearing a long, velvety skirt, a concession to the fact that the party was both indoors and outdoors and trying to navigate stairs that didn't have a hand rail. And, I had a glass of soda in my hand.
When I went to raise my right foot, I didn't lift it high enough, got it caught up in my skirt and tripped up the stair, spilling my drink. Bobert tried to make a joke of it and said something like, "I thought you were driving."
Poor guy. I nearly bit his head off.
"I have MS you idiot!"
I think that was the first time after my diagnosis that I said it aloud...I still clearly hadn't come to terms with it.

Waiting for the doctor....

The day I had my MRI done, my opthalmologist had a full schedule, but he skipped lunch to run over to the hospital and look at my MRI films himself. Helps when you work for the doctor.
But after lunch, I knew something was up and he was too busy with scheduled patients to talk to his employee patient.
Now, standard practice of our local hospital is to fas copies of test results to our office and then we would match them with the patient's file and put them in place for the doctor to see. Usually, I did this just because other people forgot to do it on days when we were busy and it needed to be done every day. So, it was about 2 p.m. when I decided to check the fax machine.
In all honesty, I suspected my MRI results would be there and I was waiting rather anxiously for them. The rediologist who reads the MRIs does not officially diagnosis you with MS. Officially, even with lesions present, it isn't a confirmed diagnosis until you get the results from a lumbar puncture, the new modern terminology for a spinal tap. But what radiologists do say is that the MRI showed several suspicious lesions, four in all, consistent with white matter scarring...hell, I don't remember the exact mumbo jumbo but the short version is: consistent with multiple sclerosis.
I think my hand was shaking when I read it. I know I was crying a few minutes later when I asked my supervisor if I could take a little break. She was confused until she saw the test results in my hand. Then, she let me leave the building.
I went to the picnic tablebehind the building and just sat there to cry. I'm not sure how long I had been out there when I heard my doctor yelling. "How could you just let her read it herself? I would have told her..."
Then the door opened and he was there, sitting with me at the table, telling me that this was not the end of life as I knew it. Ha! What the hell did he know? It's not like he was the one being sentenced to a slow, crippling disease. If I was lucky it would be slow, right?
It's funny how logic seeps in later, even if you can't hear it, can't bear to understand it when you first are told something.
"We see patients in here every day that have MS and you would never know it," he told me. "I know college professors and doctors who have MS and it is not a death sentence."
I wasn't worried about the death sentence to be honest. I was more scared, still am, if the truth be told, of a crippling sentence. But he assured me that too was only one of the things that could happen. It did not have to be.
He spent probably 20 minutes with me, calming me down enough that I could go back to work. After he was doen with patients, we looked at my MRI films and compared them to the ones from three years earlier. On the new ones, I could clearly see the lesions. On the first ones, there were not even any shadows, so as much as I wanted to blame them for missing it the first time, the truth was we didn't do enough tests to catch my MS the first time I had symptoms.
I called my husband once I calmed down a smidge and managed to say the words for the first time. I don't think I said them again out loud for months. By the time I got home, he had been on line and had an action plan. He knew what the recommended treatments were and how the disease progresses. To this day, I think he may have a better understanding of it than I do.
He didn't coddle me that day and I think that's a good thing. If he had been too nice, I would have fallen apart. Instead, he, like my doctor, was matter of fact: This is what you have and this is how we fight it.

Vacations and MS...a not lovely combo

The decision to visit New Orleans in May had been decided by factors beyond our control, like when we could take the vacation time. So, it was a bit hot when we arrived.

New Orleans is about 10 hours from here by car and since this was before the days of $3 a gallon gas, we decided to drive. It meant we could stop along the way if we wanted and we would have our car available to drive out to the site of a swamp tour we wanted to go on.

Now, I had been to New Orleans, specifically the French Quarter, before and knew we would be walking a lot, but I had no idea how miserable that would be.

I drove the first portion of the drive, about 4 hours, to West Memphis where we stopped for breakfast. By then, my right foot was starting to seriously ache from being in the same position too long and I sort of limped into the restaurant. My husband decided to drive after breakfast and drove the rest of the way into the city.

We got to our bed and breakfast about 6 p.m., check in and then decided to farther into the French Quarter for dinner. We wandered down to Decatur Street and found a great restaurant and had way too rich a dinner. By the time we got to dinner, my back hurt some, but I rubbed it a bit and then it felt better when we sat down.

After dinner, we wandered aimlessly back toward our hotel, over shot it by a few blocks and ended up with a mile walk back. By then it was dark and people were heading to Bourbon Street. My back was killing me and I had to stop every so often to put my fist in my lower back to rub out the knot forming there.

My husband was furious. I was stumbling along, clutching the nearest building for support and had tears streaming down my face. To try to maintain my balance, after falling three or four times, I was walking very rigidly and looked for all the world like a really tense drunk.

By the time we got back to the hotel, my husband was ready to pack up and come home. "You new this was going tobe a lot of walking, how can you be so out of shape," he grumbled. Through the tears, I tried to explain to him that it wasn't that I was out of breath or tired or anything like that, I simply could n't feel my right foot and my back had completely seized up. He continued to bemoan how foolish I looked, how it took an hour to walk such a short distance and the loss of our walking vacation until I took my shirt off.

Where I had been rubbing my back, trying to figure out why it seized up like it did, there was a fist-sized bruise and a giant knot. He felt awful, apologized a million times, and rubbed the knot out of my back. Then, we had to reevaluate. Should we stay and go ahead with our vacation plan even though walking killed my back?

We decided to sleep on it. By morning, my back felt a little better and we had developed a plan. Short walks with lots of breaks to sit and rest my back. It worked and we had a wonderful trip, but what I didn't know was all that was the beginning of an MS attack.

We got home and recovered from the vacation for about a week before I noticed the new problem. We were sitting watching television when I discovered that if I looked at things off to my right, I was seeing double. At first, I blamed dirty contacts. I knew better, but I liked it as an explanation.

So, since I worked for an eye clinic, I asked the doctor at work that afternoon to examine my eyes and tell me what was wrong. His diagnosis: 4th nerve palsy. The nerve that tells your eye where to focus when you look to the right, in my right eye, had stopped functioning properly. It would focus anywhere else, but not to the extreme right.

This was an optometrist, not an MD, but he told me there could be a lot of different causes, from old muscle damage that I didn't even know about to diabetes to neurological disorders and sent me to see one of our ophthalmologists. To save time, I called the MD where he was working at one of our other offices and asked if there was testing I should do before I saw him. He ordered a visual field test and blood work to rule out diabetes.

I got the blood work done and did my visual field. I knew right away from it that something was wrong. It showed an overall dimming of my vision, like I couldn't see very faint lights. Two days later, I saw the MD and ran through a thorough medical eye exam. He confirmed my optometrist's diagnosis and started digging for a cause.

I think he knew then what it was, but he tried the less serious diagnosis first. The bloodwork had ruled out diabetes. So, he wanted me to have a CAT scan to see if there was muscle damage that was somehow impairing the nerve movement. By now, he had told me that by neurological causes they meant MS, Lupus or ALS. I think that may have been the first time soemone prayed for muscle damage.

Since I scheduled tests with our local hospital all the time, I was able to schedule my CAT scan for the next day. And, since I worked in a small office, I was able to see my results later when they faxed them to the doctor. Nope, no sign of muscle damage.

My MD was working in another office again, but I called him with the test results and asked if he needed to see me or if I needed to go ahead with the MRI we had discussed. He said to get the MRI of my brain. I said I would call the open MRI center to get it schedule and he told me no.

No? They aren't as accurate as closed MRIs, he said, and if I was that claustrophobic he could give me something for it, but I had to do the closed MRI. So I called the hospital and set up my test for Friday morning before work. The MD was in my office that day and said he would run over to the hospital at lunch to look at my test results.

I knew immediately after lunch that something was seriously wrong. This particular doctor always came in from lunch and sat at the desk next to mine and checked his email after lunch. This time, he didn't. He immediately started seeing patients and when he brought the first one up to check out after lunch, he was halfway back down the hall before he told me over his shoulder, "We need to talk later...."

On toward a diagnosis

In August, 2004, my husband picked me up from work and as we were turning into the driveway of our house, we were rear-ended. I was, of course, being somewhat stupid when it happened.



He picked me up at the office where I worked and I had some files I was bringing home and only a couple miles to get home, so I did not buckle up. Bad choice!



Then as he bagen to slow down to turn into the driveway, my husband looked into the reaerview mirror and said, "Oh, don't hit me!" I, of course, looked over my left shoulder to try to see who or what should not hit us. That's when we got hit.

The speed limit in front of my house is 30 miles per hour, but it is a three-lane highway and people often speed. The college student who hit us was new to town and doing about 45 mph. My husband hit our brakes so hard, to keep us from hitting the retaining wall around our yard, that he popped the brake lines.

The initial inspection didn't look too bad for my car, the rear bumper just looked seriously caved in. We filed the police report and the hubby ran off to class. I called the insurance company while he was gone and filed a report. They recommended going to the emergency room. I scoffed. I was in pain by the time my husbandgot home from class.

Now, accidents are bad at anytime, but I had plans to fly out 36 hours later to Michigan to visit my family there. I most certainly did not have time to be in pain. Too bad I didn't get a choice in the matter.

When I saw the chiropractor they determined that I had ripped every muscle in my neck and stretch many of the tendons....ahhh, the joy of serious whiplash. And, they told me it would feel the worst about 3 days after the accident. I was instructed to take anti-inflammatories like ibuprofen, wear a neck brace whenever I was in a car, and come back after my weekend vacation.

I lived on over the counter pain meds for the next week and then started a course of massage, physical therapy and chiropractic care that lasted almost six months to restore full mobility to my neck. It also reduced the "sciatica" symptoms I had been having, so I figured the accident ended up being a boon.

Nine months later, my husband and I planned the first real vacation we had taken in years. We planned to take a week in New Orleans and see everything. We had been there a decade earlier when we were first dating, but hadn't been back.

October, 2005, had been our original target date for the vacation, but we ended up having to go five months early because of our work and class schedules. Thankfully, again, this was a boon, because it means we made it to New Orleans before Katrina.

Whacked out day....

I'll get back to my journey to finding out that I had multiple sclerosis later. Now, I want to share some words of advice on things not to do when you have MS, 'cause I did them today and boy do I feel dumb.

It's a bad idea to be hot when you have MS. A friend at myLot.com says its like when your wirings shot anyway, making the wires too hot lets them short out...today I feel like he's right.

My hubby's a photographer and needs to shoot today, so I went with him. Unofficially, I am his cheering section and sometimes extra stuff carrying helper. Usually, I just watch. But today it was 94 degrees out and I went anyway. That was dumb move #1.

Dumb move #2 was going to lunch at a new restaurant. We went to this place in Marion called Burgers & Cream...they have real, old-fashioned custard ice cream and handmade burgers.

Now, I know better than to eat all those heavy fats and sugar, but it tasted good...for about five minutes, then I just wished I had a salad.

So the lesson today is no sticky, fatty,greasy foods when you have to be out in the heat. It leads to icky evenings.

On to the Neurologist

The first visit to the neurologist was schedukled for late June and my insurance company called at some point wanting to know why I had been referred to a neurologist. To be frank, I had no idea. So I called the doctor.

"Why exactly do I need to see a neurologist?" I asked the nurse because getting in to see the doctor was more than a bit frustrating.

"To figure out what's wrong with your foot..." she replied.

Duh. I knew that. Okay, try again. "What is the diagnosis we are looking for?" God, I sound like an insurance company. Must be because the hubby was at that moment working for Blue Cross/Blue Shield.

"Probable MS". She was matter of fact. I was crushed. It was like a life sentence only worse. I imagined all the possible scenarios and let's just say I was not impressed.

To be honest, I knew very little about the disease at that point but I was crushed. I called my husband at work. He did the initial research to tell me what it might mean and told me not to worry about it until we found out for sure.

Finally, we got to the actual day of the doctor's visit. It was miserable. Nerve conductivity tests are not excruitiatingly painful, but they aren't comfortable either. I ended up with small burn marks on my lower leg from the pins used to conduct the electricity.

I did a lot of heel to toe walking and some balance exercises and learned that I had once again been sent to a closed mouth doctor. I hate that! If you are about to tell me something devastating about my life, please at least talk to me about it.

Instead, at the end of the hour plus visit he pronounced that I did not have nerve damage and that I needed further tests, specifically an MRI of the brain. We would be looking for lesions, the easiest evidence that I did indeed have MS.

Now, I had just had an MRI of the spine and it wasn't cool. MRI's are loud and enclosed and I have always been more than a little claustrophobic. I mentioned this tot he nurse who was setting up the MRI. I should have kept my mouth shut.

The kind nurse offered to set up my MRI at an open MRI center instead of the hospital. It seemed like a good idea at the time. Two weeks later, when I had the MRI done, I didn't know why I hadn't just gone to the hospital. The so-called open MRI was almost an as enclosed as a standard MRI and the test was just as nerve-wracking.

But when the radiologist read the reports, it showed no evidence of lesions. Like that, I was dismissed back to the care of my regular doctor. The possibility of MS was denied and I didn't even have to go back to see the neurologist, until three years later. By the time I saw him again, I knew he had been wrong the first time, but he was the only neurologist available, so it was back to see him again.

I made some major mistakes in that first round of diagnostics. I accepted it when they told me that MS was not the cause for my symptoms, and did not push overly hard for them to find a real cause. Instead, the doctor told me to lose 30 pounds, consider learning tai chi or other stretching-based exercise, walk more and come in for pain meds and muscle relaxers when my back seized up too much.

I had to visit him twice over the next three eyars when my back hurt so much that I couldn't lift my right foot to get into and out of my car. I found I didn't like muscle relaxants as they made my head feel fuzzy and pain killers just put me to sleep, but I suffered through with my diagnosis of sciatica until August, 2004, when my husband and I were rear ended. the subsequent treatment for whiplash made me question a lot of the things that my doctor had preached including his insistence that I avoid chiropractors.

How This Happened to Me...

The doctors diagnosed me officially with multiple sclerosis in 2005, but in the summer of 2002 I had my first scare with the disease. Turns out, they were probaby right with their initial diagnosis then and wrong when they told me I didn't have MS.

It actually started in December, 2001. I was wrapping Chrstmas presents and got a strange muscle pull in my back. I thought it would go away, so I simply treated it with rest and heat for a few days and suffered through the holidays.

In January, it was no better so I went to see a chiropractor. Shortly after that, things got weird. The chiropractor solved the back problem, but after about 3 weeks of treatment, I noticed that my right foot felt asleep all the time. So I went to see my genral practitioner.

Apparently, he was territorial or one of those doctors who thinks chiropractors are quacks, so his first advice was to stop seeing the chiropractor and to get new xrays of my back. I did.

Then, his office decided to terrify me. the called me at work to tell me I had a mass in my spine. No more information than that and no you can't see the doctor before tomorrow afternoon 'cause he's busy. He's busy?!! you just told me something is wrong with my spine and I can't see the doctor for more than 24 hours to tell me what it is because he's busy?!

Thankfully, my boss was an understanding woman and let me go home. I wet straight to the doctor's office. Turns out, he wasn't even in the office, but when you yell and cry enough, eventually a nurse feels sorry for you and reads your test reports. Turns out, I had made it my first 32 years of life wihtout anyone noticing that I had spina bifida occulta.

Spina bifida occurs in development in the womb when for whatever reasons, possibly a lack of folic acid, the spine does not form right. Occulta is the modifier to say, "Oh, it's not that bad." Generally, it means a minor abnormality with the spine. Mine was that three of my lumbar vertebrae don't close completely on the surface. the doctor said it could make it slightly easier for me to get a spinal cord injury but was nothing major to worry about.

And, I had a sixth lumbar vertebrae. Normal people have five. I have an extra one.

Oh, and that mass in my spine....well, apparently, they weren't sure what it was exactly, so it was off to the hospital to have an MRI of the spine.

A week of worries later, the MRI report showed that in one spot near the incomplete vertebrae, my blood vessels, mostly capillaries or just a little bigger had turned into a pile of wet spagetti instead of growing properly. Again, they assured me, no cause for alarm. But also, ne explanation for my foot numbness and by now the numbness had begun to spread towards my knee.

The answer was a referral to a back surgeon for evaluation. that took weeks to get and in the meantime, I tried to play tennis with friends. I was okay when moving to the eft, but when I had to run to the right, I would suffer instant muscle weakness and soetimes fall down. This did not make for a long game of tennis.

When i got in to see him, Dr. Mellion was a wonderful help. he explained my spinal abnormalities better than my regular doctor had and assured me that my spine was in as good condition as could be expected for someone my age. My age!!!! I was 32 years old, not exactly Grandma Moses and now, I'm falling apart? Give me a break!

But nothing to do with my spine explained what was happening to my foot, so on to the neurologist....in 6 weeks when he had an open appointment.

Introductions and Things

This is my new blog about the things that concern me the most: MS and the news. I envision that there will be times when it will also stray in topics involving my favorite artists (visual, not musical) and my cat. I might even occasion mention the man in my life, but well, if I talk about him too much, he'll just be annoyed.
So, this is my story. I hope you'll find it helpful or funny or just so danged annoying that you have to read it.

Printer's ink is in my blood, I'm convinced of it. It's not that any members of my family have had the passion for the print media that I have. It's just that after ahndling so many newspapers, I'm pretty certain that the ink begins to sink in. There was a time when I thought my fingers were permanently stained black from the ink.

So, I got a couple degrees in journalism and worked in the field for a few years, and then discovered that it interfered with having a life. But I couldn't quite get the news out of my system and a year ago came back to it, working as a fulltime freelancer, for print papers and for websites or whoever pays.

Two years ago I also found out that I have relapsing and remitting multiple sclerosis. I am actually one of the luck ones. So far, my case seems mild and I have been able to avoid relapses, but it hasn't been easy and I can't say tat I like what I'm hearing from others with MS.

I was never really the outdoorsy type, but I have always measured my freedom by my ability to get up and go wherever I want to. My MS has prevented this. I have a relay problem between my right foot and my brain. I think maybe my foot led the mutiny.

However it happened, I find that the major effect of my MS is that sometimes my right foot simply won't do what I tell it. This is especially difficult when walking or driving a car for long periods of time. Combine the two, like say try to walk after driving for two hours, and the result is miserable. I look like a drunken zombie, arms out-stretched to try to maintain my balance.

But I remind myself, on my good days, that I am a lucky one. I can still walk and do it without a cane or walker or wheelchair. On my bad days, I remind myself of the things I can't do like play tennis or enjoy a steaming hot tub.

Yeah, of all the things my MS took away, I think I miss steaming hot baths the most. Heat is bad for MS and I used to love taking a hot bath with a nice book of brain candy (also known as a romance novel). I never particularly liked extreme heat, but now I find that a summer trip to the grocery store can sap my strength for the rest of the day.

I was officially diagnosed with MS two years ago, but I am fairly certain that I have had it for six years. The first time I was tested, I had all the major symptoms, but the MRI came back clean so the doctors decided it was just sciatica. Stupid neurologist! And stupid me for not demanding more testing! But hey, who really wants to ask them to check again when they tell you they were wrong about the horrible diagnosis. I should have, but well, 20/20 hindsight and all that.