I have been away from this blog for way too long. And in my head, my reasoning was a good one. Things have been going great for me! My MS is really, really being controlled by the miracle poison, uh, I mean, drug, Tysabri. I'm back to full duty at work, which means when we do a search warrant I can be the first one in! Now if I can just convince someone to refuse to answer the door so I can bust it down.....
So, since everything has been so good, I felt like I didn't really have anything to write about. And then a friend mentioned to me that he thought I should still be writing, in case someone was going through what I went through just a year ago. Maybe they would want to hear that things really can get better. I need to remember that 2 years ago I was using a walker....now I'm busting down doors (all legally, of course).
And, well, the timing really couldn't be better. It was two years ago that I was dizzy and thinking that I had an ear or sinus infection. My diagnosis anniversary is next week....
I have been on Tysabri for a year now. In fact, I am getting my semi-annual MRI later this morning to make sure everything is still good. Frankly, I don't think I need the MRI to tell me that. I can go by what I feel, and I have gotten very good at listening and reading my body. For example, I can walk a pretty straight line! I haven't tipped over in a very long time. I still like my naps, but if you know me, you know that I liked them long before MS.
So, I may have a picture or two of my brain in the next day or so, for a couple of reasons....one, so I can see if my favorite lesion is still with me, and two, so I can prove to some of you that I actually have one (a brain, that is).
I'll be back soon and more frequently....Get ready.
Monday, April 9, 2012
Tuesday, March 22, 2011
Knowledge is Power....
Usually. In this case, it just gives me more to be concerned with.
Tomorrow, I start my new MS treatment, Tysabri. It's an infusion that I will get every 4 weeks at the Barrett Center at UC. I have read through all of the information I got from my doctor, including the big-worded medication guide given out by the pharmaceutical company. Here is what sticks out:
"Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML)."
Those 2 sentences are the first thing written on every piece of literature and it's always in big, bold letters. I am starting to think it's like the signs on the road when the bridge is out, "Bridge out in 1000ft", "Turn around, Bridge out", and finally, "Last chance..."
With the course of my MS, I sort of feel like the bridge is out. New lesions on every MRI, new symptoms, and it's not been a year yet. If I don't do something more aggressive now, my quality of life is sure to continue to spiral downward. I would like to dance at my 40th birthday party in September.
So, now that I knew a lot about the really big, bad side effect, I started to think about the benefits. No one has gotten PML in the first year of Tysabri treatment. It is supposed to significantly cut down the number of relapses. There is a small possibility that it may help some of the symptoms I already have. And, most people get no new lesions while on the treatment.
For me, it was kind of obvious. The benefits definitely outweigh the risks.
But, that doesn't mean I'm not nervous to get the first treatment over with. And I'm hoping that I don't start with my hypochondriac-ness and think every twinge I feel is something terrible lurking in the corner of my brain.
I did let everyone know what to look for just in case I start with a weird reaction or side effect. One thing is yellowing of the skin and eyes. The other is if I start acting really wacky. I have gotten responses that ranged from, "How will we know?", "More wackier than usual?", "I think I'll just watch for the yellow eyes...".
I also have been threatened not to die on my friend's couch tomorrow night, post-infusion.
With friends like these.....I'm a lucky chick.
Tomorrow, I start my new MS treatment, Tysabri. It's an infusion that I will get every 4 weeks at the Barrett Center at UC. I have read through all of the information I got from my doctor, including the big-worded medication guide given out by the pharmaceutical company. Here is what sticks out:
"Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML)."
Those 2 sentences are the first thing written on every piece of literature and it's always in big, bold letters. I am starting to think it's like the signs on the road when the bridge is out, "Bridge out in 1000ft", "Turn around, Bridge out", and finally, "Last chance..."
With the course of my MS, I sort of feel like the bridge is out. New lesions on every MRI, new symptoms, and it's not been a year yet. If I don't do something more aggressive now, my quality of life is sure to continue to spiral downward. I would like to dance at my 40th birthday party in September.
So, now that I knew a lot about the really big, bad side effect, I started to think about the benefits. No one has gotten PML in the first year of Tysabri treatment. It is supposed to significantly cut down the number of relapses. There is a small possibility that it may help some of the symptoms I already have. And, most people get no new lesions while on the treatment.
For me, it was kind of obvious. The benefits definitely outweigh the risks.
But, that doesn't mean I'm not nervous to get the first treatment over with. And I'm hoping that I don't start with my hypochondriac-ness and think every twinge I feel is something terrible lurking in the corner of my brain.
I did let everyone know what to look for just in case I start with a weird reaction or side effect. One thing is yellowing of the skin and eyes. The other is if I start acting really wacky. I have gotten responses that ranged from, "How will we know?", "More wackier than usual?", "I think I'll just watch for the yellow eyes...".
I also have been threatened not to die on my friend's couch tomorrow night, post-infusion.
With friends like these.....I'm a lucky chick.
Wednesday, March 2, 2011
Ahhh, Normalcy....
Well, it seems I'm finally back to "normal". Finished my 5 days of steroids, and my week or so of using a cane. I'm actually kind of glad I had my first real relapse. Now all the mystique is gone and I don't have to worry about when it's going to hit me, or what it's going to feel like. The one thing I was definitely not ready for, was the weird exhaustion. I had maybe been a little more tired when I was first diagnosed, and I knew I needed to make sure I got my rest (you will get no arguing out of me when it comes to taking naps...) but this was a lot different. I had trouble getting up my stairs to my bedroom. I haven't had that happen yet. Luckily it was the weekend and I spent time just resting. By Monday, I was back at regular work with regular hours and, while I took a nap before dinner, I was almost back to my normal laziness. By the end of the week, you wouldn't know anything was wrong with me except for the occasional stumbling, and then you would just think I was tipsy.
Then I had my follow-up with my neurologist. He agreed that I am back to my pre-relapse self. My walk is still off, but honestly, I'm not really expecting that to ever get back to normal. I kind of thought we would stay the way things are, but he had other plans. Since it's not even been a year since I was diagnosed, and I have been on Betaseron since June, and since every time i get a MRI, I come up with new lesions, my doctor thought I should consider something else. Tysabri. He told me some of the risks and I read about them also. Going with what I know from him and what I read, I think, for me, the benefits outweigh the risks. I can't keep getting new lesions and new symptoms. I just can't. If I do, my disability will most likely continue, which won't be good for me and my job, or just me personally. As my bff, Renee (the mighty smart Microbiologist, who was able to read about the medicine and tell me what the big words meant) said, "Your brain is already being attacked...." Um, thank you?
Tomorrow I meet with the infusion specialist and will get all the inside scoop. Should be interesting, and I hope only mildly frightening.
Then I had my follow-up with my neurologist. He agreed that I am back to my pre-relapse self. My walk is still off, but honestly, I'm not really expecting that to ever get back to normal. I kind of thought we would stay the way things are, but he had other plans. Since it's not even been a year since I was diagnosed, and I have been on Betaseron since June, and since every time i get a MRI, I come up with new lesions, my doctor thought I should consider something else. Tysabri. He told me some of the risks and I read about them also. Going with what I know from him and what I read, I think, for me, the benefits outweigh the risks. I can't keep getting new lesions and new symptoms. I just can't. If I do, my disability will most likely continue, which won't be good for me and my job, or just me personally. As my bff, Renee (the mighty smart Microbiologist, who was able to read about the medicine and tell me what the big words meant) said, "Your brain is already being attacked...." Um, thank you?
Tomorrow I meet with the infusion specialist and will get all the inside scoop. Should be interesting, and I hope only mildly frightening.
Tuesday, February 8, 2011
Day 3 of Infusion
And apparently, the third time actually is a charm when sticking me for the new IV, cause it took 3 times. Finally, she got a good one, unfortunately it's in the vein by my thumb and wrist on my right hand, so it makes doing certain things mighty tricky.
I'm having a mental issue with deciding whether or not I have to get my cane back out. My balance hasn't been this bad since the beginning. It's just really hard for me to go back to that. I had always had some balance issues, but it's always been controllable. It's not so much right now.
And of course, now that I have the steroids coursing through my body, a new set of questions comes up - will the steroids work? When will the inflammation go down? Will my balance get back to normal?
Good thing I'm an inquisitive one. I think the questions are just going to keep piling up.
I'm having a mental issue with deciding whether or not I have to get my cane back out. My balance hasn't been this bad since the beginning. It's just really hard for me to go back to that. I had always had some balance issues, but it's always been controllable. It's not so much right now.
And of course, now that I have the steroids coursing through my body, a new set of questions comes up - will the steroids work? When will the inflammation go down? Will my balance get back to normal?
Good thing I'm an inquisitive one. I think the questions are just going to keep piling up.
Have they made a "Mary Alert" yet?
'cause clearly on Sunday I needed one. I had to make a quick trip to the bank, to switch some money around to cover for my large co-pay for my medicine. Now on any other day, I know my way to my bank. Today, I turned left off of my street and it totally confused me. I finally got to an intersection and actually said outloud "Mary, where are you?". I finally made it to the bank, just by going the really really long way. I'm guessing this is some sort of the multiple sclerosis fog I have been hearing about. Can't wait til it starts to hug me too!
but once I was safely home, I laid on the couch and enjoyed the superbowl in a very controlled environment, watched over by my cats. Now if only I can teach them to bring me snacks while I'm laid up.
but once I was safely home, I laid on the couch and enjoyed the superbowl in a very controlled environment, watched over by my cats. Now if only I can teach them to bring me snacks while I'm laid up.
Monday, February 7, 2011
Infusion, confusion
Saturday, I get up at a decent hour to clean my house before the home health nurse gets here to start my IV, even though I have it on pretty good authority that they don't really care too much as long as you don't have bed bugs, which, thankfully I do not. I also wanted to take a shower before the iv, cause it's kinda hard to take one with it in. The nurse was nice,but had to stick me twice. Then broke the news that they would have to come back and change it on Monday, some crazy rule about only having it in for 3 days. Oh well. The nurse stayed with me throuhout my infusion to make sure I didn't have a reaction. The good thing was that "Wipeout" was on. I gotta admit that I kinda enjoyed laughing at people getting hit in the face and wiping out, and not just because I was hooked up to crazy medicine.
New Lesions
I found out last Thursday that my MRI showed that I had new lesions in my neck. My neck and spine have previously been untouched, but this shows that my MS is still active. But my doc is jumping on it fast and will schedule 5 days of iv Solu-medrol to hopefully take the inflammation down. Good thing I was at the grocery when he called, I picked up a few extra groceries so I could use my forced laziness to not leave my house too often while the IV is in. On the flip side of that, my house is actually clean, so if anyone wants to visit. I will be kinda bored.
so on Friday when the pharmacy called to set up my infusion to begin on Saturday, I instantly became non-dizzy and could walk a semi-street line, I actually thought to myself, "Do I really need this? 5 days?"
Then the next morning, I woke up and stumbled into the wall. 5 days it is.
One of my best friends always says we are all on our own journey. I guess this is mine. Although, I would like to learn how to journey around the walls once in awhile.
so on Friday when the pharmacy called to set up my infusion to begin on Saturday, I instantly became non-dizzy and could walk a semi-street line, I actually thought to myself, "Do I really need this? 5 days?"
Then the next morning, I woke up and stumbled into the wall. 5 days it is.
One of my best friends always says we are all on our own journey. I guess this is mine. Although, I would like to learn how to journey around the walls once in awhile.
Wednesday, February 2, 2011
Sometimes I like to sing the names of my medications....
To some of my favorite '80's songs. Today, waiting on Lisa to pick me up for my second MRI of the week, I was enjoying my Ativan cocktail while humming the chorus of "Xanadu". I think it fits quite well. Sing it with me "Ativan.....Ativa-an". See? Not bad. Earlier in the night, say oh about 3 am when I couldn't sleep AT ALL, my mood was a little different and I really thought I would be singing to the tune of "Amadeus, Amadeus". See what you think about this "Ativan, ativan, ativan, ativan, ativan, ativan, ativan, ativan, at-at-at-ativan oh, rock me ativan!"
It was a long night.
I really thought I wasn't one to get nervous over things like this, it was just an MRI. But when the last one didn't take because of my muscle spasms on the inside, that I can't even feel, messes it up, I guess I realize I'm at a new level. It's a strange sensation to wish that the scans show something is wrong, or something new has raised it's ugly head. I am kind of tried of being frustrated and thinking people look at me like there is nothing wrong with me. Or when I stumble getting up from a chair, or walk into a wall. First thought seems to be, what is she drinking! And while I may have a glass of wine on occasion, it's not usually before work.
I have been doing a lot of praying lately because of some work crossroads that I possibly will have to face. About 4am this morning, I realized that while I may have said I was frustrated, I think I'm really scared. Wacky things are going on and I'm just trying to deal with them the best I can. I start to feel like I shouldn't ask people to help me, cause what if that's just the last time they got for me.
I don't wanna be a bother. I get that from my Aunt.
I'm gonna get in bed and read now. Tomorrow could be a whole other adventure, especially if the doctor calls.
It was a long night.
I really thought I wasn't one to get nervous over things like this, it was just an MRI. But when the last one didn't take because of my muscle spasms on the inside, that I can't even feel, messes it up, I guess I realize I'm at a new level. It's a strange sensation to wish that the scans show something is wrong, or something new has raised it's ugly head. I am kind of tried of being frustrated and thinking people look at me like there is nothing wrong with me. Or when I stumble getting up from a chair, or walk into a wall. First thought seems to be, what is she drinking! And while I may have a glass of wine on occasion, it's not usually before work.
I have been doing a lot of praying lately because of some work crossroads that I possibly will have to face. About 4am this morning, I realized that while I may have said I was frustrated, I think I'm really scared. Wacky things are going on and I'm just trying to deal with them the best I can. I start to feel like I shouldn't ask people to help me, cause what if that's just the last time they got for me.
I don't wanna be a bother. I get that from my Aunt.
I'm gonna get in bed and read now. Tomorrow could be a whole other adventure, especially if the doctor calls.
Monday, January 31, 2011
Sigh....
Big day for me today! MRI of my brain, neck and spine. I wake up on time, mainly because I didn't sleep well at all. Got dresses, took my ativan. Fun drug, by the way. Kept me calm, comfortable and basically carefree! Happy-ish. The main issue that I had with my symptoms is the tightening of my leg muscles and my brain's refusal to let me relax them. And then there is the little issue of my muscle spasms. Uncontrolled, of course. So if I happen to walk by and hit or kick you, chances are you can blame that on the muscle spasms. Chances are....
So now, I get to blame the spasms on going back on Wednesday to finish the MRI. Apparently, even though I thought I was being still, the spasms inside made a lot of the pictures blurry.
I wanna be sedated.....
So now, I get to blame the spasms on going back on Wednesday to finish the MRI. Apparently, even though I thought I was being still, the spasms inside made a lot of the pictures blurry.
I wanna be sedated.....
Tuesday, January 25, 2011
Another MRI? So soon?
I'm really, really looking forward to Monday! No, really! My doctor gave me Ativan to get through my very long MRI of my brain, neck and spine. I haven't taken Ativan before, and I'm not opposed to new medications. It's no Nyquil, of course....
I spent 2 hours at the neurologist's office today, discussing why I may be starting an episode...dizzy, funny eyes, twitching and muscle issues. And hearing my doctor tell me that he doesn't know what the next few years hold for me. I'm not mad with him, just frustrated with how many times I (and anyone with MS) has to hear the words, "I'm not sure", "It's too early to tell", "It's different for everyone".
But life is about growth. And I am learning to trust God with things I can't control. Definitely, multiple sclerosis is one of those things.
I spent 2 hours at the neurologist's office today, discussing why I may be starting an episode...dizzy, funny eyes, twitching and muscle issues. And hearing my doctor tell me that he doesn't know what the next few years hold for me. I'm not mad with him, just frustrated with how many times I (and anyone with MS) has to hear the words, "I'm not sure", "It's too early to tell", "It's different for everyone".
But life is about growth. And I am learning to trust God with things I can't control. Definitely, multiple sclerosis is one of those things.
Friday, December 3, 2010
A much needed smack on the head...
I'm still trying to figure out quite a bit about MS. And the paranoia has definitely set in. How do you know if something that happens is a weird coincidence or the start of a relapse? I had this conversation with my doctor a few months ago and he seemed to calm me down, but it is back.
The evidence:
A) A few days ago, I started with a bit of a dizzy spell that has hung on somewhat. This is how everything began. Also, just about everyone I know has had some sort of a sinus infection and that can cause dizziness. I, too, have been sneezing lately, but not enough to warrant a call to my family doctor.
B) The right side of my tongue is feeling kind of funny. Also one of my first symptoms. And, while shopping last night, I saw some artichoke hearts at the store yesterday. Artichokes were in the meal I had the day my tongue went numb. Coincidence?? Um, I'm not sure.
C) I am super tired! But I never was one to turn down a nap, and I have been known to sleep, and sleep, and sleep.... MS or not. This could also just mean that I am lazy....
D) I stared at my friend for an unusually long time because I couldn't think of the word "Winter". Not only could I not think of that word, but I couldn't remember any words. This was one of the issues I had in the hospital. But on the other hand, I'm not exactly brilliant, so it may just be nothing.
Even when I put all those things together, I don't have a good answer. And neither does the doctor. It could be the start of a relapse. It may actually be a relapse, but since I'm on some good medicine, it may not get any worse.
So, my conclusion is:
STOP THINKING ABOUT IT! STOP TALKING ABOUT IT!
Um, OK, Mary....You don't have to hollar at me (or yourself) like that!
Here is what I am saying, and I think it can pertain to a lot of things -
Stop stressing about (insert problem here). Worrying isn't going to add a day to your life.
Be appreciative of what you have, even if it is a problem, because problems usually teach you something. And they let you know you are alive.
And as a bonus.....Be thankful for who you have in your life because you never know when they will be gone.
Try not to use the words, "I'll do that later." Later may not come.
Until exhibits A through D really hit me in the head, I'm not going to stress about it. I'm going to be happy that I have something to blame my crooked walk on (other than my 2 left feet). I am also going to be happy that at my sister's wedding next week I can dance however I want, cause I have lesions and they have sucked the talent right out of me!
And after last night, which was full of shopping and back-drafting laughter that I had not done in a few months, looks like my cup maybe just about up to it's beginning level of 3/4ths full.
The evidence:
A) A few days ago, I started with a bit of a dizzy spell that has hung on somewhat. This is how everything began. Also, just about everyone I know has had some sort of a sinus infection and that can cause dizziness. I, too, have been sneezing lately, but not enough to warrant a call to my family doctor.
B) The right side of my tongue is feeling kind of funny. Also one of my first symptoms. And, while shopping last night, I saw some artichoke hearts at the store yesterday. Artichokes were in the meal I had the day my tongue went numb. Coincidence?? Um, I'm not sure.
C) I am super tired! But I never was one to turn down a nap, and I have been known to sleep, and sleep, and sleep.... MS or not. This could also just mean that I am lazy....
D) I stared at my friend for an unusually long time because I couldn't think of the word "Winter". Not only could I not think of that word, but I couldn't remember any words. This was one of the issues I had in the hospital. But on the other hand, I'm not exactly brilliant, so it may just be nothing.
Even when I put all those things together, I don't have a good answer. And neither does the doctor. It could be the start of a relapse. It may actually be a relapse, but since I'm on some good medicine, it may not get any worse.
So, my conclusion is:
STOP THINKING ABOUT IT! STOP TALKING ABOUT IT!
Um, OK, Mary....You don't have to hollar at me (or yourself) like that!
Here is what I am saying, and I think it can pertain to a lot of things -
Stop stressing about (insert problem here). Worrying isn't going to add a day to your life.
Be appreciative of what you have, even if it is a problem, because problems usually teach you something. And they let you know you are alive.
And as a bonus.....Be thankful for who you have in your life because you never know when they will be gone.
Try not to use the words, "I'll do that later." Later may not come.
Until exhibits A through D really hit me in the head, I'm not going to stress about it. I'm going to be happy that I have something to blame my crooked walk on (other than my 2 left feet). I am also going to be happy that at my sister's wedding next week I can dance however I want, cause I have lesions and they have sucked the talent right out of me!
And after last night, which was full of shopping and back-drafting laughter that I had not done in a few months, looks like my cup maybe just about up to it's beginning level of 3/4ths full.
Monday, November 29, 2010
D for "delightful"
The long weekend is over.
There isn't much pumpkin pie left.
I have done a bit of Christmas shopping.
And my Vitamin D level is low.
I mean, really, really low. And just so everyone knows, I cannot just drink some extra milk. But I do appreciate you suggesting it for me. Holy cow! I would have to drink a lot of milk to make up for the 50,000 IU of Vitamin D I now have to take.
So, why is it so low? There have been debates about the correlation between Multiple Sclerosis and low Vitamin D levels. And there have been studies that say Vitamin D can prevent or slow the progression of MS. I'm just kinda happy that I found something that says why I may have gotten MS.
Of course, I could have a low level because I am Irish and only get sunburned, so I stay out of the sun as much as possible. Another reason could be that I spent the last 5 years of my life working on patrol at night and sleeping during the day. Maybe that made me more prone to get MS. I didn't realize that all those days cuddled in my bed with the curtains drawn caused my brain to be cookin' some lesions! No wonder my retinas are so sensitive to light. I wear my sunglasses at night.....
I started my prescription Vit D on Saturday. I'm really enjoying the long list of medications I am taking. The most important information I check on them when I first get them filled is the list of side affects.
Pretty much if it doesn't say "weight gain", I will have no problem taking it.
There isn't much pumpkin pie left.
I have done a bit of Christmas shopping.
And my Vitamin D level is low.
I mean, really, really low. And just so everyone knows, I cannot just drink some extra milk. But I do appreciate you suggesting it for me. Holy cow! I would have to drink a lot of milk to make up for the 50,000 IU of Vitamin D I now have to take.
So, why is it so low? There have been debates about the correlation between Multiple Sclerosis and low Vitamin D levels. And there have been studies that say Vitamin D can prevent or slow the progression of MS. I'm just kinda happy that I found something that says why I may have gotten MS.
Of course, I could have a low level because I am Irish and only get sunburned, so I stay out of the sun as much as possible. Another reason could be that I spent the last 5 years of my life working on patrol at night and sleeping during the day. Maybe that made me more prone to get MS. I didn't realize that all those days cuddled in my bed with the curtains drawn caused my brain to be cookin' some lesions! No wonder my retinas are so sensitive to light. I wear my sunglasses at night.....
I started my prescription Vit D on Saturday. I'm really enjoying the long list of medications I am taking. The most important information I check on them when I first get them filled is the list of side affects.
Pretty much if it doesn't say "weight gain", I will have no problem taking it.
Friday, November 19, 2010
"Funny the way it is..."
I really need to get back in the habit of updating this more often, for no other reason than it is cathartic for me. And I love a good catharsis every once in awhile.... And, maybe someone will read it and get a kick out of it, or realize they aren't the only one with wacky stuff going on.
I expected to leave my neurologist's office full of snark, but with my new attitude, I was all smiley! He told me my balance is getting better. Not perfect yet, but I mentioned that he didn't know me PL (Pre-Lesions) and that it wasn't that great to begin with. He upped one of my medicines that should help with the muscle twitches. I think it does, but maybe I have just gotten used to them. Either way, they don't bother me as much, so it's a winning situation for me.
I left the office with an appointment for another MRI to see how my brain is doing (go ahead and insert your jokes here). They got me in just a few days after my visit. Apparently they are all fans of working very expeditiously.
I know a lot of people do not like MRI's but they really don't bother me too much even though they are noisy and you can get a little claustrophobic. They let me pick what music I wanted to listen to. I haven't had that option before. So, since I just try to zone out during the test, I picked Dave Matthews Band. It's kinda hard for me to understand what he is singing, so combining his mumbling with the noise of the machine, I was still able to just zone out...
They gave me a CD of the images they took of my brain. Isn't it cute? Check out my eyes! You can't tell in this picture, but they are blue with orange splashes.
Of course when I got to a computer, I tossed the CD in and tried to see if my lesions are better or not. After looking at over 600 images, I realized that I am not a doctor and even though I know what the lesions look like, I don't know if they are new or old, bigger or smaller. So I will wait for him to call me back.
He did. And it wasn't all bad. The other lesions I have seem to be "quiet". I felt like I should have been whispering when I was on the phone with him so they wouldn't "wake up". But what this meant was that the medicine I am on seems to be doing it's job. However.....
 |
| Here is a new lesion... |
 |
| Here is a new lesion... |
 |
| And here is a new lesion... |
In keeping with the whole "can't really tell you much about this disease" thing, it is unknown when the new lesions popped up. I didn't start my shots until 2 months after I was diagnosed and I wasn't on the full dose for 6 weeks - it doesn't really start to work for at least a month. What the new lesions mean, though, is that the disease is still active. But since my new symptoms are controlled, I am just going to continue on what I have been doing and, barring any odd episodes, I'll have another MRI in a year
I can live with that.
So, doc...will you change anything on my work restrictions??
He kind of did. He said I have a "neurological condition" and that it caused some "gait unsteadiness". "Climbing or careful balancing might be more difficult" for me. And he said I probably shouldn't chase bad guys over rooftops. Not a problem. Heights are not my favorite thing. And if I encounter a incident that requires me to carefully balance on a
tight rope between buildings, I'm gonna have to call for backup.
Now if I can just get the city doctor to agree....
Monday, October 25, 2010
It's been awhile...
I have been absent from my story for a bit. The written story, anyway. The story has still been with me and a few chapters have been added. So, let's do some catching up...
My brain is still frayed! I'm still giving myself a shot every other day, and I'm up to the full dose. It's really not so bad. The side affects have subsided, and I think the medicine actually warded off a relapse or 2. But really, who knows? Did I have a dizzy spell because of the lesions are because I had a head cold? Or was it because my niece made me roll down the hill over and over? The answer is similar to the question of how many licks does it take to get to the center of a Tootsie Roll Tootsie Pop....The world may never know.
I kinda got side tracked a few days after my last post. Things were going pretty well, I was back to work and spent a nice weekend with my family and best friend. When I got home Sunday afternoon, my door was unlocked. Very, very strange. I always lock my door. I went inside and my couch was moved. Surely the cats didn't get together and move it. I walked to the kitchen....the back door window was broken and all the cabinets were opened. I actually thought to myself, "Wow, that was a weird storm that blew through my house." I blame my inability to see what had actually happened on the lesions.
When I went upstairs to my bedroom and found my bed overturned, every item from every drawer on the floor, I kinda figured it wasn't the cats or a storm. I had become a side of the crime triangle...the victim of a burglary. Well, this is zero good.
If I had written about this right after it happened, you would have read a lot of angry words, some boo-hooing, and why me's? But none of that really does any good. I was mad, I'm sure I cried, and I know I said, "Seriously? Haven't I had enough of a bad year?" But, getting back to my whole "glass 3/4ths full" thing, I will focus on the good parts. I had a friend who dropped everything and came right over, took me to dinner and helped me cover my back door. Other friends and family who helped me clean up. And all of my cats were still in the house. So, once I was able to not jump at every noise in my house or sneak through the house looking like Rambo (that's right, come on in while I'm home...), I got over it. Still, 4 months later and I'm not sure I have everything back where it belongs! Of course, I'm not sure everything was where it belonged in the first place.....
Fast forward to August....I'm not going to go into everything. Frankly, it's still too raw to really talk about, but.... My dad had cancer and got a not so good report. We dealt with it, got through that one.
Then came September....Dad got a his calcium level a little whacked out. Ok, a lot whacked out. Ended up in the hospital. To make a very fast happening story a little faster (just to get it over with), he died on 9/11. He was a fire fighter so the day was appropriate and he did know how to make entrances and exits.
It was the worst thing ever. Still is. My glass has a bit of a leak in it.
Anyway, all this goes back to the question I asked earlier "Hasn't the year been bad enough?". I will never ask that question again. You get what you can deal with, and I suppose one day I will know why my 39th year had to be so bad. One good thing that has come of it is that you are looking at 1 chick who will not complain about turning 40 next September!
So tomorrow, the snarkiness will come back because I have an appointment to the neurologist and he will tell me things like, "Oh, it's too early to tell still." and "I'm not sure yet." But honestly, it's ok. I have learned a lot of lessons so far this year. How to walk with a cane, how to give myself a shot, how to say good-bye.....
Hmmm, shots don't seem so bad anymore. So, appreciate the people around you. Let them know you love them. Don't take anything for granted. Things can change in a second. Make sure you are ready.
My brain is still frayed! I'm still giving myself a shot every other day, and I'm up to the full dose. It's really not so bad. The side affects have subsided, and I think the medicine actually warded off a relapse or 2. But really, who knows? Did I have a dizzy spell because of the lesions are because I had a head cold? Or was it because my niece made me roll down the hill over and over? The answer is similar to the question of how many licks does it take to get to the center of a Tootsie Roll Tootsie Pop....The world may never know.
I kinda got side tracked a few days after my last post. Things were going pretty well, I was back to work and spent a nice weekend with my family and best friend. When I got home Sunday afternoon, my door was unlocked. Very, very strange. I always lock my door. I went inside and my couch was moved. Surely the cats didn't get together and move it. I walked to the kitchen....the back door window was broken and all the cabinets were opened. I actually thought to myself, "Wow, that was a weird storm that blew through my house." I blame my inability to see what had actually happened on the lesions.
When I went upstairs to my bedroom and found my bed overturned, every item from every drawer on the floor, I kinda figured it wasn't the cats or a storm. I had become a side of the crime triangle...the victim of a burglary. Well, this is zero good.
If I had written about this right after it happened, you would have read a lot of angry words, some boo-hooing, and why me's? But none of that really does any good. I was mad, I'm sure I cried, and I know I said, "Seriously? Haven't I had enough of a bad year?" But, getting back to my whole "glass 3/4ths full" thing, I will focus on the good parts. I had a friend who dropped everything and came right over, took me to dinner and helped me cover my back door. Other friends and family who helped me clean up. And all of my cats were still in the house. So, once I was able to not jump at every noise in my house or sneak through the house looking like Rambo (that's right, come on in while I'm home...), I got over it. Still, 4 months later and I'm not sure I have everything back where it belongs! Of course, I'm not sure everything was where it belonged in the first place.....
Fast forward to August....I'm not going to go into everything. Frankly, it's still too raw to really talk about, but.... My dad had cancer and got a not so good report. We dealt with it, got through that one.
Then came September....Dad got a his calcium level a little whacked out. Ok, a lot whacked out. Ended up in the hospital. To make a very fast happening story a little faster (just to get it over with), he died on 9/11. He was a fire fighter so the day was appropriate and he did know how to make entrances and exits.
It was the worst thing ever. Still is. My glass has a bit of a leak in it.
Anyway, all this goes back to the question I asked earlier "Hasn't the year been bad enough?". I will never ask that question again. You get what you can deal with, and I suppose one day I will know why my 39th year had to be so bad. One good thing that has come of it is that you are looking at 1 chick who will not complain about turning 40 next September!
So tomorrow, the snarkiness will come back because I have an appointment to the neurologist and he will tell me things like, "Oh, it's too early to tell still." and "I'm not sure yet." But honestly, it's ok. I have learned a lot of lessons so far this year. How to walk with a cane, how to give myself a shot, how to say good-bye.....
Hmmm, shots don't seem so bad anymore. So, appreciate the people around you. Let them know you love them. Don't take anything for granted. Things can change in a second. Make sure you are ready.
Monday, June 21, 2010
I got chills....
They're multiplyin'.....
But so far, nothing's losing control, thankfully.
I gave myself my 3rd dose this afternoon. Didn't take anything before hand, because I wanted to see what it would do. And, about 4 hours later, I'm feeling a little achy. Nothing too terrible, but I wanted to jot it down in my journal. Goes something like this:
But so far, nothing's losing control, thankfully.
I gave myself my 3rd dose this afternoon. Didn't take anything before hand, because I wanted to see what it would do. And, about 4 hours later, I'm feeling a little achy. Nothing too terrible, but I wanted to jot it down in my journal. Goes something like this:
Dose 3. Achy.
I like to keep it kind of simple, you know.
Do you know what achy means??? That's right! I will be taking some NyQuil soon. And I just bought the mixed berry flavor today. I also picked up some Advil, so before anyone thinks I have a "problem", on Wednesday, I will take the Advil before my dose to try to ward off the symptoms.
And since I'm only on 1/4th of a dose, working my way up to a whole dose, I bought the big bottle of Advil.
Friday, June 18, 2010
Which came first....
The side effects or my hypochondriac-ism??
Dose number one was deep within my system by about 7pm last night. At around 7:30pm, I started feeling a little weird. Tired, achy and I think my head was hot. So by 9pm, I was home, in bed with NyQuil also coursing through my system. By 9:45pm I was fast asleep and missed who won Iron Chef....
So, what caused it?? I had a busy day. Pool therapy in the morning, then I did laundry, followed by a bit of work. I rushed home and got my medicine, then rushed out to meet Renee for dinner. That was a big day. I very easily could have been wiped out by that. Or, it was the medicine. Of course, since I have been accused many times of being a hypochondriac by my siblings, it is possible that just because the nurse told me that it was possible to have flu-like symptoms, I would have them.
So, I'm going to wait to decide....Next dose is Saturday evening.
Dose number one was deep within my system by about 7pm last night. At around 7:30pm, I started feeling a little weird. Tired, achy and I think my head was hot. So by 9pm, I was home, in bed with NyQuil also coursing through my system. By 9:45pm I was fast asleep and missed who won Iron Chef....
So, what caused it?? I had a busy day. Pool therapy in the morning, then I did laundry, followed by a bit of work. I rushed home and got my medicine, then rushed out to meet Renee for dinner. That was a big day. I very easily could have been wiped out by that. Or, it was the medicine. Of course, since I have been accused many times of being a hypochondriac by my siblings, it is possible that just because the nurse told me that it was possible to have flu-like symptoms, I would have them.
So, I'm going to wait to decide....Next dose is Saturday evening.
Thursday, June 17, 2010
Oh, happy day....
No, seriously. Happy day! My medication came today! And, as an added bonus, Laurel, the nurse was able to fit me in to show me how to mix up the liquid gold that I will be injecting into my belly. But wait, it keeps getting better! Work let me leave early to meet Laurel, and then....I know, how much better can this get?? I had dinner with Renee! And it was happy hour, so the appetizers were half off! I'm so ok with this MS stuff!! (At least for now....)
So, doing the math, it was exactly 2 months ago today that I was diagnosed with MS. How cool that it was today that I got started on my medicine? I don't believe in accidents....unless you count the time I had a sneezing fit and sort of hit my cruiser into a parked car. That was totally an accident.....
I'm trying to get this episode of my blog out before any adverse symptoms from the medicine start. If I wait too long, this may have a whole different tone to it!
All the equipment they gave me is very cool. Syringes, little vials of medicine, needles, even an auto injector. After practicing giving the shot 4 times, twice with just the syringe and twice with the auto thing, I decided that just giving it with the syringe would be a little easier for me. Luckily I was a vampire before I became a cop, so I have some experience with needles. Of course, I only took blood out, I never put anything in before.
It was time to do the real thing. I attached a couple things, pushed some stuff into a vial, mixed it up, put it in the syringe, put some ice on my belly and finally stalled for a bit and chatted with Laurel. Eventually, though, I had to do it. And, you know....it wasn't bad at all! It's a little needle and the ice numbed my skin so I really didn't feel it much. I think knowing what it is supposed to do for me makes me not mind all that stuff....it probably wouldn't matter if it did hurt.
So now I get to be proactive...I have taken my Advil and my night medicine and hopefully will sleep through the fever and flu-like stuff that 6 out of 10 people get. But, honestly, if it slows down more lesions and the disability part of it, I'll take the flu.
Besides, I love NyQuil, remember??
So, doing the math, it was exactly 2 months ago today that I was diagnosed with MS. How cool that it was today that I got started on my medicine? I don't believe in accidents....unless you count the time I had a sneezing fit and sort of hit my cruiser into a parked car. That was totally an accident.....
I'm trying to get this episode of my blog out before any adverse symptoms from the medicine start. If I wait too long, this may have a whole different tone to it!
All the equipment they gave me is very cool. Syringes, little vials of medicine, needles, even an auto injector. After practicing giving the shot 4 times, twice with just the syringe and twice with the auto thing, I decided that just giving it with the syringe would be a little easier for me. Luckily I was a vampire before I became a cop, so I have some experience with needles. Of course, I only took blood out, I never put anything in before.
It was time to do the real thing. I attached a couple things, pushed some stuff into a vial, mixed it up, put it in the syringe, put some ice on my belly and finally stalled for a bit and chatted with Laurel. Eventually, though, I had to do it. And, you know....it wasn't bad at all! It's a little needle and the ice numbed my skin so I really didn't feel it much. I think knowing what it is supposed to do for me makes me not mind all that stuff....it probably wouldn't matter if it did hurt.
So now I get to be proactive...I have taken my Advil and my night medicine and hopefully will sleep through the fever and flu-like stuff that 6 out of 10 people get. But, honestly, if it slows down more lesions and the disability part of it, I'll take the flu.
Besides, I love NyQuil, remember??
God has a real good sense of humor....
There are plenty of days that God makes me chuckle. Even with everything going on, I realize you have to laugh. Sometimes it's when I get called one of my new nicknames, like Grandma, Invalidy, or Crip (I'm starting my own segment of the gang, Crips...now I just need one of my nemesis' to start the Bloods, and we will be in business).
Then there are the times when the irony of a situation makes you shake your head. This is what happened the day I got to go back to work. My bff, Renee, was told by her doctor that she was not allowed to go to work. You see, she was getting on a horse and something popped in her knee. It's not like she was new to the horse scene, either. She has been riding for many years. But on this particular day, something went a bit wrong.
Actually, it went more than a little bit wrong....She tore her ACL. And now she has to have surgery on Tuesday. This is what the 2 of us look like together.
Aren't we adorable?? She's on crutches and I'm on a cane. 20 years we have known each other and we pretty much agreed that when one of us was weak, the other would be strong....But, I think this is kind of funny. Now after a few weeks of her driving me around, looks like I'll be able to return the favor.
I'll be impressed if we get through the next two months without Tim coming home to find us in a ball unable to get up by ourselves. The bright side to that is that I am sure we will be giggling....
Wednesday, June 16, 2010
Patients....Patience....
I always had trouble spelling those words...would always get them confused....Now, I'm one of those patients with not a lot of patience. I have no choice but to learn it....
I am finally allowed to start my MS medication. My doc gave me the choice of 2, Betaseron and Rebif. Those are the 2 with higher potency. He didn't want me with one of the other ones since I wasn't responding to all the other stuff as well as he had hoped. I chose Betaseron. It's been around the longest. The side effects don't seem quite as bad. And it's made from E-coli, not the ovaries of Chinese hamsters....
I got my training kit delivered to me yesterday, and the actual medicine will be here tomorrow. Unfortunately the training nurse can't get here until Monday to show me how to inject myself. This is where the patience part is coming in. I can not wait to start this stuff!!! It's not supposed to help any symptoms I already have, but is supposed to slow the progression of the disease.
I'm a little nervous about it, too. It's supposed to make you feel bad...actually, to quote my doctor, "It's going to be a little rough for a few months." Months? Really? Ok, fine. Let's get it going while I'm still only allowed to work 4 hours a day.
Come on, people! Let's hurry up and slow this stuff down!
I am finally allowed to start my MS medication. My doc gave me the choice of 2, Betaseron and Rebif. Those are the 2 with higher potency. He didn't want me with one of the other ones since I wasn't responding to all the other stuff as well as he had hoped. I chose Betaseron. It's been around the longest. The side effects don't seem quite as bad. And it's made from E-coli, not the ovaries of Chinese hamsters....
I got my training kit delivered to me yesterday, and the actual medicine will be here tomorrow. Unfortunately the training nurse can't get here until Monday to show me how to inject myself. This is where the patience part is coming in. I can not wait to start this stuff!!! It's not supposed to help any symptoms I already have, but is supposed to slow the progression of the disease.
I'm a little nervous about it, too. It's supposed to make you feel bad...actually, to quote my doctor, "It's going to be a little rough for a few months." Months? Really? Ok, fine. Let's get it going while I'm still only allowed to work 4 hours a day.
Come on, people! Let's hurry up and slow this stuff down!
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