When I was diagnosed with MS, my doctor told me that I was lucky, that so many options would have been worse.
I know what he was thinking. Some of the things they tested me for including ALS and Lupus are virtually death sentences and pretty uncomfortable in the process. With MS, especially relapsing and remitting MS, I'm fairly healthy most of the time. I am especially lucky that I have such a mild case.
Yeah, right.
You see the doctor said that I probably knew people, saw them every day and never even knew they were MS victims. To the casual observer, the signs of the disease in many people are almost non-existent.
Well guess what. This is my life and I am not a casual observer. I am acutely aware of everything that I cannot do, that I have to or that has changed about my life because of this inconvenient disease.
As a kid, my step-father called me a mountain goat, because I loved to climb on anything and I could usually find a path up even the steepest hill. Now, I'm lucky to keep my balance walking across an uneven parking lot.
I decide not to go on outings with friends because I can't walk more than about half a mile without needing to stop and sit my down for my back. The back spasms cause me to trip and stumble.
When I do walk, I can't walk rapidly... I used to be able to stride with a purpose.
I only drive short distances. From the time I got my first car, I loved the freedom it represented. My first car was a rattle trap I bought for $250 and I still took it to Louisiana (500 miles) to go visit a friend right after I moved to Illinois. It had no heater and the window wouldn't roll up all the way, but I was free on the Interstate.
Now, if I drive for more than an hour, that stumbling is in full force, and I can't enjoy arriving at the destination. After about an hour of driving, my foot seizes up anyway and I don't feel safe driving for much longer.
I love hiking and backpacking, but they are pretty much out now. Going to fairs or the zoo requires planning and lots of rests breaks.
I am thankful that my disease is not as bad as it could be, but that doesn't mean ti isn't bad for me.
And in the most simple of phrases, that sucks!
Showing posts with label MS. Show all posts
Showing posts with label MS. Show all posts
Thursday, July 23, 2009
Saturday, July 11, 2009
The Unexpected Bad Days
If you ever been to Southern Illinois, you know the truth in the statement, “It’s not the heat, it’s the humidity.”
Two years ago when I first tried to start this blog, I was having a pretty bad summer all around. I was seriously broke and I found out my MS meds had screwed with my blood chemistry and liver functions, leaving me depressed and sick. On the upside, the MS itself was not flaring up.
We had a horribly hot summer and I thought at the time that maybe I was the odd man out in autoimmune diseases, because I felt best when I could open the windows and door and get some fresh air. I kept the air condition set near 80 that summer to keep my bills down.
Since then, I’ve realized that it’s not the heat, it’s the humidity. Yup, it sounds like an old cliché, but I have found it’s true. This summer we have had about 4 inches more rain than normal and the humidity has consistently been high. That summer, though the heat was miserable, it was a dry summer. Not quite a drought, but definitely more dry than normal.
So, the difference is that this summer, I am feeling the MS much more than usual. Yesterday, I stood in the park for about forty minutes talking with Theresa and Emily. We were just standing, but man was I worn out when we were done. I still had errands to run, including the much dreaded trip to Wal-Mart. By the time I got home, my back was seizing up and my limp very pronounced.
It was a tough day.
Days like that, when I am parking half a football field away and then wandering through the Super Wal-Mart is exceedingly painful. The use of the shopping cart to help maintain my balance makes me angry as I am too damn young to feel this crippled. Bending to grab something off the bottom shelf become a joke that isn’t funny and all I really want out of lie at that moment are heavy duty painkillers. I make due with Tylenol and ignore the fact that it can combine with the MS medicine to give me liver troubles. Easing the pain so I can walk is all that matters in that moment.
Today, the rain is pouring from the skies, but the humidity and heat combination is packing less of a punch. I can walk today.
Tomorrow is looking good too, but on Tuesday the temperature is supposed to jump to the mid-90s and with all this fresh water around, the humidity will be high. I think Tuesday I need to stay indoors.
Two years ago when I first tried to start this blog, I was having a pretty bad summer all around. I was seriously broke and I found out my MS meds had screwed with my blood chemistry and liver functions, leaving me depressed and sick. On the upside, the MS itself was not flaring up.
We had a horribly hot summer and I thought at the time that maybe I was the odd man out in autoimmune diseases, because I felt best when I could open the windows and door and get some fresh air. I kept the air condition set near 80 that summer to keep my bills down.
Since then, I’ve realized that it’s not the heat, it’s the humidity. Yup, it sounds like an old cliché, but I have found it’s true. This summer we have had about 4 inches more rain than normal and the humidity has consistently been high. That summer, though the heat was miserable, it was a dry summer. Not quite a drought, but definitely more dry than normal.
So, the difference is that this summer, I am feeling the MS much more than usual. Yesterday, I stood in the park for about forty minutes talking with Theresa and Emily. We were just standing, but man was I worn out when we were done. I still had errands to run, including the much dreaded trip to Wal-Mart. By the time I got home, my back was seizing up and my limp very pronounced.
It was a tough day.
Days like that, when I am parking half a football field away and then wandering through the Super Wal-Mart is exceedingly painful. The use of the shopping cart to help maintain my balance makes me angry as I am too damn young to feel this crippled. Bending to grab something off the bottom shelf become a joke that isn’t funny and all I really want out of lie at that moment are heavy duty painkillers. I make due with Tylenol and ignore the fact that it can combine with the MS medicine to give me liver troubles. Easing the pain so I can walk is all that matters in that moment.
Today, the rain is pouring from the skies, but the humidity and heat combination is packing less of a punch. I can walk today.
Tomorrow is looking good too, but on Tuesday the temperature is supposed to jump to the mid-90s and with all this fresh water around, the humidity will be high. I think Tuesday I need to stay indoors.
Sunday, July 5, 2009
Picking Blueberries...or not...
It seems like an easy question and one completely devoid of implications related to multiple sclerosis, but that is not quite the case.
Anyone who has picked blueberries, or any other berries, knows that the motion for the picking can be tough on your back and generally, heat makes the berries sweeter. So, bloueberry picking is usually a hot, physically stressful passtime.
Last year, I went with a dear friend and picked berries not too far from our home. We picked about five pounds of berries in an hour or so. I suffered for it for days.
The blueberry farm is on a fairly steep hill leaving me on awkward footing. Furthermore, the best way to pick blueberries is to tie a bucket around your waist and roll the berries off the bush and into the bucket. This is awkward on anyone's back, but one of the major pain centers for me with my MS is my lower back. For years, we thought I had sciatica, not multiple sclerosis and my lower back has a tendancy to simply seize sometimes making walking or standing difficult. Just over an hour in the hot July sun and the awkward stance of blueberry picking led to one of those seizures. I could barely walk afterward.
Now, the upside of picking blueberries is that exercise, though painful and unpleasant, is one of the best things for fighting MS without medications. The healthier overall that I can keep my body, the fewer relapses I tend to have.
Another upside of picking blueberries is that they are way cheaper if you pick them yourself. This is important because I eat a lot of blueberries. Blueberries are a superfood, a tremendous antioxidant and great for my natural fighting MS diet.
So when the opportunity to go berry picking today arose, I was torn. The day is humid, but not overly hot. But the hill is still steep and I have to be able to walk tomorrow for work. So I skipped the berry picking. It left me frustrated and angry. Something so simple and such fun (chatting with a friend and enjoying the day) should not have implications for days and days, but it does.
Anyone who has picked blueberries, or any other berries, knows that the motion for the picking can be tough on your back and generally, heat makes the berries sweeter. So, bloueberry picking is usually a hot, physically stressful passtime.
Last year, I went with a dear friend and picked berries not too far from our home. We picked about five pounds of berries in an hour or so. I suffered for it for days.
The blueberry farm is on a fairly steep hill leaving me on awkward footing. Furthermore, the best way to pick blueberries is to tie a bucket around your waist and roll the berries off the bush and into the bucket. This is awkward on anyone's back, but one of the major pain centers for me with my MS is my lower back. For years, we thought I had sciatica, not multiple sclerosis and my lower back has a tendancy to simply seize sometimes making walking or standing difficult. Just over an hour in the hot July sun and the awkward stance of blueberry picking led to one of those seizures. I could barely walk afterward.
Now, the upside of picking blueberries is that exercise, though painful and unpleasant, is one of the best things for fighting MS without medications. The healthier overall that I can keep my body, the fewer relapses I tend to have.
Another upside of picking blueberries is that they are way cheaper if you pick them yourself. This is important because I eat a lot of blueberries. Blueberries are a superfood, a tremendous antioxidant and great for my natural fighting MS diet.
So when the opportunity to go berry picking today arose, I was torn. The day is humid, but not overly hot. But the hill is still steep and I have to be able to walk tomorrow for work. So I skipped the berry picking. It left me frustrated and angry. Something so simple and such fun (chatting with a friend and enjoying the day) should not have implications for days and days, but it does.
Friday, July 3, 2009
Okay, so I'll try again
Two years ago, I tried to start a blog about my experience with multiple sclerosis and I failed miserably. Two years and a total of sixteen posts.
But with the encouragement of the Write Sisters, my local writing group, I've decided to try again. To be certain, my battle with MS is not as dramatic and terrifying as others that I have seen. My battle is largely conducted in secret with only my husband, my doctor and a few very close friends ever seeing the war I wage.
Sometimes, because I am so successful in waging this battle, it is easy for people around me to forget or never even know that I have a part of my body trying to destroy the rest of it. I notice more when I'm hot or tired or battling something as simple as a minor cold.
Yesterday, I noticed it in the dentist's chair. First, it was while I was waiting for the numbing shots to kick in. My hands were shaking badly enough that I needed to hold the remote with two hands to be able to turn channels on the television the dentist graciously provided.
then, as I sat for hours during the procedure, I noticed the need to ask for breaks, to run to the bathroom and stretch rather than staying in one position too long. When I got up from the chair, the limp was more pronounced than it usually is.
Today as I recover from the scaling and root planing, I realize I will recover more slowly than most people. It will require better pain management and a longer recovery time. And, just for a minute, I am reminded that my immune system and I are not friends and never will be again.
Most days, this blog will be about living a full life with MS. There are only a few things I don't do because of the illness, but there may be days I talk or whine about those as well. I hope you'll come along for the ride.
But with the encouragement of the Write Sisters, my local writing group, I've decided to try again. To be certain, my battle with MS is not as dramatic and terrifying as others that I have seen. My battle is largely conducted in secret with only my husband, my doctor and a few very close friends ever seeing the war I wage.
Sometimes, because I am so successful in waging this battle, it is easy for people around me to forget or never even know that I have a part of my body trying to destroy the rest of it. I notice more when I'm hot or tired or battling something as simple as a minor cold.
Yesterday, I noticed it in the dentist's chair. First, it was while I was waiting for the numbing shots to kick in. My hands were shaking badly enough that I needed to hold the remote with two hands to be able to turn channels on the television the dentist graciously provided.
then, as I sat for hours during the procedure, I noticed the need to ask for breaks, to run to the bathroom and stretch rather than staying in one position too long. When I got up from the chair, the limp was more pronounced than it usually is.
Today as I recover from the scaling and root planing, I realize I will recover more slowly than most people. It will require better pain management and a longer recovery time. And, just for a minute, I am reminded that my immune system and I are not friends and never will be again.
Most days, this blog will be about living a full life with MS. There are only a few things I don't do because of the illness, but there may be days I talk or whine about those as well. I hope you'll come along for the ride.
Saturday, October 27, 2007
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.
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.
Tuesday, August 14, 2007
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?
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?
Wednesday, July 4, 2007
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.
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.
Wednesday, June 27, 2007
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.
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.
Tuesday, June 26, 2007
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.
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.
Monday, June 25, 2007
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...."
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...."
Friday, June 22, 2007
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.
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