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.

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.