It seems I have been away for about a week now so I figured it was about time to get back on here. I have a phone appointment in a little while with an MSer who is thinking about making the switch to Tysabri. That has caused me to go back and do some reading of ye olde blog from way back, I mean waaaaaaaaay back. Years back so I can remember what it was like for me in the beginning. I had even forgotten I started in October of 2008, thinking it was in November.
It's a good thing I went back and looked at things. I know this MSer will have some questions for me and I am afraid I will come off as a dolt because I don't remember all my Tysabri history. Now, it's just a part of my routine every month and I have been doing so much better for at least a solid year. What a difference this medicine has made in my life!
I know not everyone has the same symptoms as I do and the same reaction to every medicine. I do know that, for me, Tysabri has been a step in the right direction. I am much better mentally, emotionally, and physically now as compared to when I first started Tysabri. As I look at the changes in my life in the past 6 months: a diagnosis of Type 2 diabetes, a change in grades at school, and the death of my father, I see that I have had ups and downs but they are normal ups and downs. Yes, my depression did get worse but I seem to be coming out of the tunnel and into the light again.
So what's up? My mood has lifted, physically I am in less pain, and I am enjoying looking forward to the small, positive, good parts of life.
Showing posts with label Tysabri. Show all posts
Showing posts with label Tysabri. Show all posts
Monday, January 24, 2011
Tuesday, October 19, 2010
The good with the bad
Yesterday was a great day to have off for a doctor and a Tysabri appointment. It was a lovely Fall day and I had a pleasant ride to and from both appointments. Nothing to really report on the MS front but the bad news is that my guy is leaving the practice in two weeks. Major bummer.
I'll be moved over to the existing neurologist but I don't really understand him well when he speaks. I guess I'll just need to focus really hard when I see him from now on. The other new neuro coming in knows nothing about Tysabri so she isn't an option for me, according to my guy.
Yesterday was also my 2 year anniversary of Tysabri infusions. I was grading papers when I looked down and saw that my IV had come undone and blood was gushing out all over the floor and my hand. It was very messy but my white sweatshirt came out unscathed somehow.
I tried to pay my Tysabri bill but it was all messed up yet again. I just had received a bill for 1800 dollars and some change a few weeks back. I supposedly owe less than five hundred dollars but every time I call I get another story. So I try to pay yesterday and they tell me there is no balance. Go figure.
Oh, and I don't have the antibodies for the JC virus. Yippee.
Work today was okay. It was work but I came home and cleaned up a bit to be prepared for next Friday's 2nd annual Just Dance Extravaganza at my place. I need to have these social events a few times a year so that my apartment gets weeded out.
It's all good in the end.
I'll be moved over to the existing neurologist but I don't really understand him well when he speaks. I guess I'll just need to focus really hard when I see him from now on. The other new neuro coming in knows nothing about Tysabri so she isn't an option for me, according to my guy.
Yesterday was also my 2 year anniversary of Tysabri infusions. I was grading papers when I looked down and saw that my IV had come undone and blood was gushing out all over the floor and my hand. It was very messy but my white sweatshirt came out unscathed somehow.
I tried to pay my Tysabri bill but it was all messed up yet again. I just had received a bill for 1800 dollars and some change a few weeks back. I supposedly owe less than five hundred dollars but every time I call I get another story. So I try to pay yesterday and they tell me there is no balance. Go figure.
Oh, and I don't have the antibodies for the JC virus. Yippee.
Work today was okay. It was work but I came home and cleaned up a bit to be prepared for next Friday's 2nd annual Just Dance Extravaganza at my place. I need to have these social events a few times a year so that my apartment gets weeded out.
It's all good in the end.
Monday, August 23, 2010
Infused
I sit perched on the edge of my recliner writing in my journal with my free-from-Staples red pen. I'm watching E! while chewing on a Dunkin' Donuts cookie and occasionally sipping my small caramel frappe. Yep, I'm plugged into my IV; it's hooked into my left hand, taped above the Silly Bandz on my wrist.
It's infusion day for my Tysabri, the liquid gold medicine for my multiple sclerosis. I'm at the infusion center where I'll be for about two hours while my medicine and then some saline will drip into my veins. This medicine seems to be keeping me in remission which is a wonderful thing. It's also wonderful that I have insurance, a good neurologist that was willing to prescribe this, and an infusion center about 50 minutes from my house.
I'm a lucky girl.
I am lucky. I have a good job and I live in a beautiful area, one small block from gorgeous Lake Ontario. I have great insurance with low prescription co-pays. I work in tandem with great medical providers. I am lowering my blood sugars. I have a handful of close friends that I can count on. I have a blog that I adore and people who read it.
What's not to like?
It's infusion day for my Tysabri, the liquid gold medicine for my multiple sclerosis. I'm at the infusion center where I'll be for about two hours while my medicine and then some saline will drip into my veins. This medicine seems to be keeping me in remission which is a wonderful thing. It's also wonderful that I have insurance, a good neurologist that was willing to prescribe this, and an infusion center about 50 minutes from my house.
I'm a lucky girl.
I am lucky. I have a good job and I live in a beautiful area, one small block from gorgeous Lake Ontario. I have great insurance with low prescription co-pays. I work in tandem with great medical providers. I am lowering my blood sugars. I have a handful of close friends that I can count on. I have a blog that I adore and people who read it.
What's not to like?
Wednesday, July 28, 2010
Another number
Yesterday I went to see the diabetes nurse educator. It was a great visit and I learned the basics of diabetes and how to test my blood sugar levels. The first reading there was 354. That's a bit too high but it could be worse. Since then I have been testing twice a day and my numbers have been in the 200's. That's an improvement but there's still lots more room to go.
The DNE also doubled my Metformin to 2000 mg and added in Glipizide 5 mg twice a day. More pills to take but if it makes me healthier I am all for it. If you could see my "pill bottle shelves" you might be amazed that someone so short has enough room to ingest all the meds lined up there.
My new numbers I actually DO need to focus on are 100 and 140. If I could get my blood sugar levels there I would be doing a fabulous job. 100 is the number (or somewhere around there) where I should generally be and less than 140 about two hours after a meal. It's something to shoot for in the near future.
Today was my Tysabri infusion and I went in in kind of a funk. I had a headache but after the infusion I came right home and tumbled into bed for a two-hour nap. Thankfully tomorrow is a day with no doctors or nurses. I can sleep in and get my exercise done before a relaxing shower.
I wanted to pick up another Geneen Roth book today but I was just too wiped out to make it to the book store. I think I might look them up on Amazon and order them from there.
Tomorrow I have dinner out with some friends and Saturday is another BBQ with other friends. Some fun times ahead.
Still trying to focus on conscious eating. I discovered that there are some things in my apartment that I don't really like eating at all and I threw them away. How cool is that? I also find it difficult to eat in silence. I crave having the idiot box on while I eat. I guess some bad habits are hard to break. Thank goodness I am working on making some good ones.
The DNE also doubled my Metformin to 2000 mg and added in Glipizide 5 mg twice a day. More pills to take but if it makes me healthier I am all for it. If you could see my "pill bottle shelves" you might be amazed that someone so short has enough room to ingest all the meds lined up there.
My new numbers I actually DO need to focus on are 100 and 140. If I could get my blood sugar levels there I would be doing a fabulous job. 100 is the number (or somewhere around there) where I should generally be and less than 140 about two hours after a meal. It's something to shoot for in the near future.
Today was my Tysabri infusion and I went in in kind of a funk. I had a headache but after the infusion I came right home and tumbled into bed for a two-hour nap. Thankfully tomorrow is a day with no doctors or nurses. I can sleep in and get my exercise done before a relaxing shower.
I wanted to pick up another Geneen Roth book today but I was just too wiped out to make it to the book store. I think I might look them up on Amazon and order them from there.
Tomorrow I have dinner out with some friends and Saturday is another BBQ with other friends. Some fun times ahead.
Still trying to focus on conscious eating. I discovered that there are some things in my apartment that I don't really like eating at all and I threw them away. How cool is that? I also find it difficult to eat in silence. I crave having the idiot box on while I eat. I guess some bad habits are hard to break. Thank goodness I am working on making some good ones.
Tuesday, July 13, 2010
Diving in...
I worked out again today with Beto (the instructor) doing a new Zumba workout. By the time I was finished I had sweat rolling off me and a big smile plastered on my face. I actually wanted to work out this afternoon! Can you believe that? A year ago the thought would never have entered my mind.
After showering (and dressing) I went off to Wal-Mart. Time to buy a new scale. I got on it and weighed the same as I did at the doctor's office on Thursday. This being despite the fact that I drank a ton of water and a last forbidden frappe today. And it's a little humid; I just feel fatter than normal in my clothes.
At the post office I got some great news in the mail. I've been dueling verbally with the insurance company and my Tysabri infusion center. I have been getting charged each month for the infusions when I should have only paid a set amount long ago. Yesterday the infusion center talked to the insurance company and the insurance people admitted that they had a mistake! I got all new EOBs today showing I owe much less than what they said I did. Awesome news for me.
Well, it's time for me to leave for the Weight Watchers meeting. I have to start somewhere and there's nowhere to go but down with my weight!
After showering (and dressing) I went off to Wal-Mart. Time to buy a new scale. I got on it and weighed the same as I did at the doctor's office on Thursday. This being despite the fact that I drank a ton of water and a last forbidden frappe today. And it's a little humid; I just feel fatter than normal in my clothes.
At the post office I got some great news in the mail. I've been dueling verbally with the insurance company and my Tysabri infusion center. I have been getting charged each month for the infusions when I should have only paid a set amount long ago. Yesterday the infusion center talked to the insurance company and the insurance people admitted that they had a mistake! I got all new EOBs today showing I owe much less than what they said I did. Awesome news for me.
Well, it's time for me to leave for the Weight Watchers meeting. I have to start somewhere and there's nowhere to go but down with my weight!
Sunday, July 4, 2010
Happy 4th and Happy July!
Today is America's birthday and my first post for July. I'm watching some made-for-TV movie, okay more like listening to it while I type away. I've had one solid week off from school and I have done nothing more than to read and sleep the time away with an occasional trip out and about to run errands.
I did have my latest Tysabri infusion on Friday, a sort of pre-4th of July celebration. After my infusion I went out with my colleague and friend, Mary, and we enjoyed a fattening lunch at Friendly's, along with a trip to Kohl's for some bloomers and other things for me, and a trip to the store I covet, Hobby Lobby. I was picking up some stickers and marked down papers to create my luau scrapbook of my last 5th grade class's (what else?) luau.
I have had two school dreams/frightmares in the last few days. Usually I don't have those until sometime late in August. I am reading some novels I'll be using in class so maybe that's prompted the dreams. Of course, this reading is in between my summer fun reading of magazines and chick lit.
Have I mentioned that I might have diabetes? If I did already, I apologize. My memory of the past is crystal clear but I can tell you the same story twice in ten minutes and not realize it. My last blood test (from a few months ago) showed a high glucose level so I am going on Tuesday to have a second test done for my A1C level. That will be the clincher as to whether I am diabetic or not. I have had issues that mimic diabetes for a few months so I am not entirely surprised by this new journey to a diagnosis (or not).
I don't drink much at work because I can't get to the bathroom on my own schedule.I do, however, drink a lot at home. I also pee a lot and wake up at night to urinate as well. I also noticed at work a few months ago some problems with my eyesight getting blurry at times. I also keep getting UTIs which can be another sign of diabetes. So if I am a type-2 diabetic, it will not come as a complete surprise out of left field. It just means I really need to get my $hit together as far as eating and exercise goes.
Let's face it, it's not healthy to be a good 75 pounds overweight and I know that. I also know that I adore the new McD's caramel frappe and fresh cut pineapple (no, not together). I enjoy Zumba when I do it but I also enjoy my frequent naps. It's all a matter of balance. Eat less and move more and maybe IF I am diabetic I can make it go away by getting control of my body.
Maybe I'll need to change the title of the blog or start a new one... I am dealing well with the MS and am in remission. I have dealt with a lot of messy stuff but there is more still to deal with. If there weren't, I wouldn't be overweight. But right this moment I feel blessed to be alive, to be as healthy as I am, and to live in this great country.
Happy birthday America, land that I love!
I did have my latest Tysabri infusion on Friday, a sort of pre-4th of July celebration. After my infusion I went out with my colleague and friend, Mary, and we enjoyed a fattening lunch at Friendly's, along with a trip to Kohl's for some bloomers and other things for me, and a trip to the store I covet, Hobby Lobby. I was picking up some stickers and marked down papers to create my luau scrapbook of my last 5th grade class's (what else?) luau.
I have had two school dreams/frightmares in the last few days. Usually I don't have those until sometime late in August. I am reading some novels I'll be using in class so maybe that's prompted the dreams. Of course, this reading is in between my summer fun reading of magazines and chick lit.
Have I mentioned that I might have diabetes? If I did already, I apologize. My memory of the past is crystal clear but I can tell you the same story twice in ten minutes and not realize it. My last blood test (from a few months ago) showed a high glucose level so I am going on Tuesday to have a second test done for my A1C level. That will be the clincher as to whether I am diabetic or not. I have had issues that mimic diabetes for a few months so I am not entirely surprised by this new journey to a diagnosis (or not).
I don't drink much at work because I can't get to the bathroom on my own schedule.I do, however, drink a lot at home. I also pee a lot and wake up at night to urinate as well. I also noticed at work a few months ago some problems with my eyesight getting blurry at times. I also keep getting UTIs which can be another sign of diabetes. So if I am a type-2 diabetic, it will not come as a complete surprise out of left field. It just means I really need to get my $hit together as far as eating and exercise goes.
Let's face it, it's not healthy to be a good 75 pounds overweight and I know that. I also know that I adore the new McD's caramel frappe and fresh cut pineapple (no, not together). I enjoy Zumba when I do it but I also enjoy my frequent naps. It's all a matter of balance. Eat less and move more and maybe IF I am diabetic I can make it go away by getting control of my body.
Maybe I'll need to change the title of the blog or start a new one... I am dealing well with the MS and am in remission. I have dealt with a lot of messy stuff but there is more still to deal with. If there weren't, I wouldn't be overweight. But right this moment I feel blessed to be alive, to be as healthy as I am, and to live in this great country.
Happy birthday America, land that I love!
Friday, April 2, 2010
Not an April Fool
It's an absolutely gorgeous day here where I live. High 80s but no oppressive humidity, with blue skies and that yellow orb most people call the sun. It's been a long, lonely winter without that orb.
We're still rolling along with Weeble's Wobblers, my MS Walk team. So far I have raised $1620 on my own and my teammates are doing their part too. Our team goal, set by me before I started to fundraise, was $1200 so we have already surpassed that. Go Team Weeble. Thanks to everyone who has joined the team or supported us in some way.
Today was my appointment with my primary care doctor. It's been over a year since I've been there since I have been doing so well. It was great to step on the scale and actually be lighter, more than 20 pounds lighter! Woohoo!
We discussed my MS (under control), my mental health (totally under control), and everything else that was left over health-wise. He's pleased with how things are going and he ran some bloodwork which I'll be interested in seeing the results of when it comes back. He also sponsored me for the MS Walk with a generous donation. Turns out that his medical doctor partner's mom had MS and died from complications of it, according to him. The partner's dad started a small local MS Resource group whose walk I have done before. That walk is a 3-mile walk inside a local mall. That was a great time.
So here I am with Good Friday off, it was a beautiful day, I had a great appointment and I have the weekend and then Monday off for my Tysabri. Life feels right, like a comfy sweater that slips on and keeps you warm and cozy. Except I am wearing shorts and sandals and I feel like a super star.
I hope this post finds you in good spirits and wishing you all a wonderful weekend whether you celebrate anything or not.
We're still rolling along with Weeble's Wobblers, my MS Walk team. So far I have raised $1620 on my own and my teammates are doing their part too. Our team goal, set by me before I started to fundraise, was $1200 so we have already surpassed that. Go Team Weeble. Thanks to everyone who has joined the team or supported us in some way.
Today was my appointment with my primary care doctor. It's been over a year since I've been there since I have been doing so well. It was great to step on the scale and actually be lighter, more than 20 pounds lighter! Woohoo!
We discussed my MS (under control), my mental health (totally under control), and everything else that was left over health-wise. He's pleased with how things are going and he ran some bloodwork which I'll be interested in seeing the results of when it comes back. He also sponsored me for the MS Walk with a generous donation. Turns out that his medical doctor partner's mom had MS and died from complications of it, according to him. The partner's dad started a small local MS Resource group whose walk I have done before. That walk is a 3-mile walk inside a local mall. That was a great time.
So here I am with Good Friday off, it was a beautiful day, I had a great appointment and I have the weekend and then Monday off for my Tysabri. Life feels right, like a comfy sweater that slips on and keeps you warm and cozy. Except I am wearing shorts and sandals and I feel like a super star.
I hope this post finds you in good spirits and wishing you all a wonderful weekend whether you celebrate anything or not.
Thursday, March 4, 2010
Tysabri tomorrow
Just a quick one to let you know I am off to get my next Tysabri infusion tomorrow. Yeah for Ty!
I also need to get my scrapbooking stuff together because Saturday is National Scrapbooking Day and I am going. It's at a local hotel and I am spending the day scrapping with some friends. It's about time I did something fun for myself!
Wishing everyone a wonderful weekend because today is my Friday.
Weebs
PS: Still looking for people to sponsor or join Team Weeble. Check out my Facebook page if we're friends IRL. I appreciate any help we can get. :)
I also need to get my scrapbooking stuff together because Saturday is National Scrapbooking Day and I am going. It's at a local hotel and I am spending the day scrapping with some friends. It's about time I did something fun for myself!
Wishing everyone a wonderful weekend because today is my Friday.
Weebs
PS: Still looking for people to sponsor or join Team Weeble. Check out my Facebook page if we're friends IRL. I appreciate any help we can get. :)
Monday, October 12, 2009
Happy anniversary to me!
Today makes 13 infusions and one year of successful Tysabri treatment! Woo Woo!!
I lucked out and had school off thanks to Queen Isabella so I didn't have to take any more time off for this month. I did take Friday off as a whole day for a different medical appointment. I also had another med checkup today after my Tysabri.
It was a busy day, all in all.
How do I like the Tysabri? I love it. The worst part is having to take off time to have it infused. The best part is that it's once a month, four seconds worth of an IV stick, I get to watch good cable, and I feeeeeeeeeeel better.
I feel so much better than I did a year ago. Last year I had terribly weak and painful arms. I had horrid fatigue and issues with severe depression. I was losing my train of thought as I was teaching. I was, in a word, a mess.
Now I feel like I am living a different life. Tysabri has been in me for a year now working its magic. I am still tired and I need a lot of sleep but I go to bed early to get up early. I take my Provigil and that helps keep me puttering along during the day. I take my morning med menagerie and off to work I go with some pep in my step.
I am mostly on top of my paper work and my grades. More on top of things than usual, I'd say. I'm happy most of the time. I smile. I joke and laugh with the kids. I don't let things stress me out as much. I do have some issues with my eyesight lately but they are pretty much benign. I sometimes lose clarity and everything blurs together. If I work my eyeballs right then I can see enough to get by until all is clear again. This only lasts for a short while so it's not worth a call to the neuro yet. I'm keeping watch on it, tongue in cheek.
So happy anniversary to me and to Tysabri. It's been a wild ride.
I lucked out and had school off thanks to Queen Isabella so I didn't have to take any more time off for this month. I did take Friday off as a whole day for a different medical appointment. I also had another med checkup today after my Tysabri.
It was a busy day, all in all.
How do I like the Tysabri? I love it. The worst part is having to take off time to have it infused. The best part is that it's once a month, four seconds worth of an IV stick, I get to watch good cable, and I feeeeeeeeeeel better.
I feel so much better than I did a year ago. Last year I had terribly weak and painful arms. I had horrid fatigue and issues with severe depression. I was losing my train of thought as I was teaching. I was, in a word, a mess.
Now I feel like I am living a different life. Tysabri has been in me for a year now working its magic. I am still tired and I need a lot of sleep but I go to bed early to get up early. I take my Provigil and that helps keep me puttering along during the day. I take my morning med menagerie and off to work I go with some pep in my step.
I am mostly on top of my paper work and my grades. More on top of things than usual, I'd say. I'm happy most of the time. I smile. I joke and laugh with the kids. I don't let things stress me out as much. I do have some issues with my eyesight lately but they are pretty much benign. I sometimes lose clarity and everything blurs together. If I work my eyeballs right then I can see enough to get by until all is clear again. This only lasts for a short while so it's not worth a call to the neuro yet. I'm keeping watch on it, tongue in cheek.
So happy anniversary to me and to Tysabri. It's been a wild ride.
Tuesday, September 15, 2009
Tidbits
School is going smashingly well. I adore my little fifth graders and the year is off to a great start. I know I have been neglecting ye olde blog and its readers but I beg your forgiveness.
I have a Tysabri treatment tomorrow and next month will be one year on Ty. I really think this stuff is working for me. Yippee.
A *huge* shout out to B.J.M. who bought and brought me the new Dan Brown novel. Another yippee!
Wishing everyone a fab September,
Weebs
I have a Tysabri treatment tomorrow and next month will be one year on Ty. I really think this stuff is working for me. Yippee.
A *huge* shout out to B.J.M. who bought and brought me the new Dan Brown novel. Another yippee!
Wishing everyone a fab September,
Weebs
Sunday, August 16, 2009
Happy birthday
Happy belated birthday to my blog, Happy belated birthday to my blog, Happy belated birthday to my blog, Happy belated biiiiiiiiiiiiiiiiirthday to my blog!
I went back today to look up when I started ye olde blog and it was at the beginning of last August. So somehow in all my summer slothiness I missed my 1st birthday. So here I am celebrating a little bit late but you have to admit my cake looks fabulous. There's plenty of cake for all of you and the best part is it contains no calories.
I reread all of my August entries and thought to myself, "D@mn, I used to write well!" I'm not quite sure what happened to me along the way but I feel like you're not getting the best of me anymore. Maybe the slow corroding of my brain is eating away at my humor cells.
I do notice I am not complaining about going back to school and being afraid of it like I was last year. I am not in as much pain as I was so I will place the thanks for that squarely on Tysabri. A few more infusions and it will be my Tysabri year anniversary. Tomorrow is infusion number eleven or twelve but because we get them every 4 weeks you have more than 12 infusions in a calendar year.
I'm looking forward to my Tysabri as always because I get to watch real cable TV. Afterwards I am going out to lunch at Applebee's with a colleague of mine so that will be nice too. I may even sneak a drink in there at lunch. Then again I may just have water. That will save some calories and some money. Money is always running low at this time of the summer.
Everyone always says teachers have such a plum job getting summers off. It is great, don't get me wrong, but we don't get paid in the summer so you have to save money all year long so you can get through your summer. We have to be good financial planners although I am in some serious debt. Serious debt. But I live with it and try to live within my means and pay it down.
Anyway, thanks for reading and commenting and telling me things in person or on Facebook. It means a lot to me to have people who still read even after a whole year. Thank you!
Weeble Girl 8-D
Tuesday, August 4, 2009
Neuro appointment
A quickie:
Drove out to see the neuro today, err rather his N.P. or his P.A or something else with initials. I get the funny guy who speaks good English; that was my choice when I first went there. The other doctor is good but when he speaks my hearing is on a pause-delay system and by the time I understood what he's said, he's on to talking about something new.
So I go to see funny guy and I don't really have much to report. I talked about the urgency issues for #1 and #2. He suggested Ditropan (sp?) for issues with number one but I told him I'd rather hold off on more meds for now.
He suggested I actually take the fish oil that I store in the freezer and that will help me with my leg cramp issues. The more I do physically, the more I cramp.
I told him I noticed that I walk slower but that's just the nature of this beast. I can walk, heck I could even do something akin to a run if absolutely needed (it just wouldn't be pretty or feel good).
We shot the chit for a while as we usually do and then he brought up the oral meds coming out within the next year or two. He told me flat out that they would not be suggesting or allowing any of their patients to start on the oral meds right away. He said that he is hearing their efficacy rate to be around 45%, which he says is lower than anything out on the market already. They are coming with some hefty possible side effects like heart problems and lymphoma. Then again Tysabri, my current med, comes with the possible side effect of PML and death.
So I won't be switching from Tysabri any time soon. I will watch what happens with the oral meds for the first few years and then see what happens. Maybe down the road I won't need to take time off each month for an infusion. Maybe I'll just pop a(nother) pill and that will be all I need to fight off MS, plus all the symptom meds.
Either way, in the meantime I'll still be seeing the kinda cute initialy guy. I have another appointment in six months and we're not doing any new MRIs unless something comes up between now and then.
Sounds like I am doing okay for being on summer vacation, folks. Now if we can just make it through setting up my new room at school in early September and make it through the whole school year we'll be doing swell. It would be the bees' knees, baby.
Drove out to see the neuro today, err rather his N.P. or his P.A or something else with initials. I get the funny guy who speaks good English; that was my choice when I first went there. The other doctor is good but when he speaks my hearing is on a pause-delay system and by the time I understood what he's said, he's on to talking about something new.
So I go to see funny guy and I don't really have much to report. I talked about the urgency issues for #1 and #2. He suggested Ditropan (sp?) for issues with number one but I told him I'd rather hold off on more meds for now.
He suggested I actually take the fish oil that I store in the freezer and that will help me with my leg cramp issues. The more I do physically, the more I cramp.
I told him I noticed that I walk slower but that's just the nature of this beast. I can walk, heck I could even do something akin to a run if absolutely needed (it just wouldn't be pretty or feel good).
We shot the chit for a while as we usually do and then he brought up the oral meds coming out within the next year or two. He told me flat out that they would not be suggesting or allowing any of their patients to start on the oral meds right away. He said that he is hearing their efficacy rate to be around 45%, which he says is lower than anything out on the market already. They are coming with some hefty possible side effects like heart problems and lymphoma. Then again Tysabri, my current med, comes with the possible side effect of PML and death.
So I won't be switching from Tysabri any time soon. I will watch what happens with the oral meds for the first few years and then see what happens. Maybe down the road I won't need to take time off each month for an infusion. Maybe I'll just pop a(nother) pill and that will be all I need to fight off MS, plus all the symptom meds.
Either way, in the meantime I'll still be seeing the kinda cute initialy guy. I have another appointment in six months and we're not doing any new MRIs unless something comes up between now and then.
Sounds like I am doing okay for being on summer vacation, folks. Now if we can just make it through setting up my new room at school in early September and make it through the whole school year we'll be doing swell. It would be the bees' knees, baby.
Sunday, June 21, 2009
Thank you, thank you, thank you and other tidbits
I do appreciate so many of you coming back time after time to read and sometimes comment. I know I have been a super slacker since I went back to work but there are some of you committed readers that keep coming back, no matter how little I post.
This is the final week of school for the 2008-2009 academic year. Yippee! A full day tomorrow and then two half-days with students. Thursday is a full day with no students. I suspect that will be the day I am sweating the most as I pack up the rest of my classroom to move next door. Yep, I am moving one room away which is a real pain in my azz but I understand completely the need for it. It's still a gigantic pain in my rear though.
I received a phone call today from a colleague who told me the phone tree was activated. Apparently something is going on in my building as everyone in the middle school is supposed to go to the high school for a 7:30 meeting. Why we have to meet at the high school for a meeting just for our building, I don't get. That makes no sense as students arrive at 7:45 off the buses at the middle school. As you might imagine there are a lot of rumors going around but it seems like nothing good can come from a meeting called over the weekend. Time will tell.
My sister was home for the weekend as her best friend was getting married and she was the maid of honor. I didn't see her but I did talk to her for a while on the phone and she supposedly returned the one awesome CD I burned last summer. Since then I can't get the CD burner thingie to work right so I have been waiting to get back my one accomplishment so I can listen to it in the car.
My brother checked in from Poland as he's traveling throughout Europe on a month long R & R after serving in Iraq and using his leave to come home to see my dad as he went through his heart surgeries this late January/early February. My brother is having a wonderful time and he deserves it completely.
My dad had another heart surgery right after I went back to work in May and he's having another one this Wednesday. If you're one of those who believe in prayer, feel free to add him to your list.
I have another Ty infusion on Tuesday afternoon. I think that may be why I have had four colds since I have been back to work. I didn't make the connection until someone pointed it out in a comment a while back; methinks it was Denver Refashionista who made the connection and comment.
I had another interesting phone call yesterday. In a roundabout way one of my students made a connection for me with someone in the town I live in. The little girl told this person her teacher had MS and unbeknownst to her she was telling someone else who had MS! This other woman called me up and we had a nice conversation about MS in the education world. She's "in the closet" so to speak about her condition because she doesn't have tenure and a secure position. I'm very "out of the closet" as I tell my students and my co-workers and bosses are all aware of my MS. I also have the luxury of tenure and a full-time position.
I know many people feel they do not have the security to tell their coworkers and/or bosses about their MS. I absolutely get that and understand it. To each their own. I just hope that I can continue to be a resource for this woman who reached out to me yesterday.
This is the final week of school for the 2008-2009 academic year. Yippee! A full day tomorrow and then two half-days with students. Thursday is a full day with no students. I suspect that will be the day I am sweating the most as I pack up the rest of my classroom to move next door. Yep, I am moving one room away which is a real pain in my azz but I understand completely the need for it. It's still a gigantic pain in my rear though.
I received a phone call today from a colleague who told me the phone tree was activated. Apparently something is going on in my building as everyone in the middle school is supposed to go to the high school for a 7:30 meeting. Why we have to meet at the high school for a meeting just for our building, I don't get. That makes no sense as students arrive at 7:45 off the buses at the middle school. As you might imagine there are a lot of rumors going around but it seems like nothing good can come from a meeting called over the weekend. Time will tell.
My sister was home for the weekend as her best friend was getting married and she was the maid of honor. I didn't see her but I did talk to her for a while on the phone and she supposedly returned the one awesome CD I burned last summer. Since then I can't get the CD burner thingie to work right so I have been waiting to get back my one accomplishment so I can listen to it in the car.
My brother checked in from Poland as he's traveling throughout Europe on a month long R & R after serving in Iraq and using his leave to come home to see my dad as he went through his heart surgeries this late January/early February. My brother is having a wonderful time and he deserves it completely.
My dad had another heart surgery right after I went back to work in May and he's having another one this Wednesday. If you're one of those who believe in prayer, feel free to add him to your list.
I have another Ty infusion on Tuesday afternoon. I think that may be why I have had four colds since I have been back to work. I didn't make the connection until someone pointed it out in a comment a while back; methinks it was Denver Refashionista who made the connection and comment.
I had another interesting phone call yesterday. In a roundabout way one of my students made a connection for me with someone in the town I live in. The little girl told this person her teacher had MS and unbeknownst to her she was telling someone else who had MS! This other woman called me up and we had a nice conversation about MS in the education world. She's "in the closet" so to speak about her condition because she doesn't have tenure and a secure position. I'm very "out of the closet" as I tell my students and my co-workers and bosses are all aware of my MS. I also have the luxury of tenure and a full-time position.
I know many people feel they do not have the security to tell their coworkers and/or bosses about their MS. I absolutely get that and understand it. To each their own. I just hope that I can continue to be a resource for this woman who reached out to me yesterday.
Sunday, June 14, 2009
Sick AGAIN
Can I say that I am under the weather yet again with my fourth cold since I went back to work on May 1st? Yes, I can say it. It's the truth. I am sniffling and snuffling.
Why does this keep happening? Maybe if I took all my supplements and my multivitamin every day instead of once a month I may be feeling better. Better living through chemistry is one of my top sayings.
I have one more full week of school and then three more days the next week, two of which will be half days. I am trying really hard to hang in there but I did take a day off this past week. That is going to hurt me in the pocketbook as I have no more sick time available after taking 5 months off to recuperate from a rough bout with some MS symptoms. I wish now that I had buckled down and gone to work so I could take a day off this week. Of course, I think about taking time off every week. That's just me, the tired slacker.
I keep trying to move my bedtime up and I swear there are days when I go to bed at 7:45 which has got to be earlier than some of the kiddos in my class. I moved my wake up time back a teensy bit to 5:38ish. I am still tired.
The good news is that I don't come home from work every single day needing a nap like I did before my sick leave. That may be the Tysabri working its liquid gold medicine throughout my body. Now I come home and nap maybe once a week. The rest of the time I flop on my bed and read for an hour or so to decompress and rest my mind.
I better go as it is almost 8 p.m. and my bedtime. This darned cold will not get the best of me. I can't let it.
Why does this keep happening? Maybe if I took all my supplements and my multivitamin every day instead of once a month I may be feeling better. Better living through chemistry is one of my top sayings.
I have one more full week of school and then three more days the next week, two of which will be half days. I am trying really hard to hang in there but I did take a day off this past week. That is going to hurt me in the pocketbook as I have no more sick time available after taking 5 months off to recuperate from a rough bout with some MS symptoms. I wish now that I had buckled down and gone to work so I could take a day off this week. Of course, I think about taking time off every week. That's just me, the tired slacker.
I keep trying to move my bedtime up and I swear there are days when I go to bed at 7:45 which has got to be earlier than some of the kiddos in my class. I moved my wake up time back a teensy bit to 5:38ish. I am still tired.
The good news is that I don't come home from work every single day needing a nap like I did before my sick leave. That may be the Tysabri working its liquid gold medicine throughout my body. Now I come home and nap maybe once a week. The rest of the time I flop on my bed and read for an hour or so to decompress and rest my mind.
I better go as it is almost 8 p.m. and my bedtime. This darned cold will not get the best of me. I can't let it.
Sunday, May 17, 2009
Sunday, Sunday
Ah the weekend is ending and Monday is coming quickly. This always happens on Sundays. It's sort of a calendar thing. It repeats over and over again.
I have done some work on Monday's plans and I am already anticipating the four day weekend that is to come at the end of the week ahead. Four days to sleep in and do little errands. Yippee. I am also looking forward to Friday off for my next Tysabri infusion. I don't have to take a day off without pay so that works out wonderfully for me. This will be infusion number nine or ten; I'm not sure which.
I haven't been writing on here much because work does indeed suck most of the life out of me. Plus, how many ways can I say the day was rotten? Although this last week did have that one spectacular bonus day where my two biggest unruly offenders were gone from the classroom. That truly made for a wonderful day. Were there still some problems? Yes, of course but they were minimal compared to a regular day.
Tomorrow all the unrulies are expected to be back, although one may end up in ISS for the day due to Friday's incidents. A girl can dream, as awful as that may sound. I don't dislike this student but I very much dislike his behavior. I suspect most of his classmates dislike it as well but there are some who see him as the " cool" kid. I just wonder if he's trying out for the Future Inmates of America program. Sigh...
I haven't been writing about MS a lot either because I seem to be doing okay. I am noticing some fatigue as the week goes on and I am napping some days after work. I am working hard at school so I can leave as early as possible. That allows me to get home and nap and get some dinner before it's too late. I'm going to bed somewhere between 8:30 and 9:15 p.m. My alarm goes off around 5:20 a.m. and I seem to be getting out of bed without a lot of problems. Would I like to sleep longer? You betcha but I get up and drag myself into the shower.
So the sleep is good, the getting up is okay, and getting through the day is sometimes a challenge but I am doing it. One day at a time is what I seem to focus on. It's much more palatable that way, taken in twenty-four hour increments.
It looks like Tysabri is doing its job along with my merry band of daily meds. And so it goes.
I have done some work on Monday's plans and I am already anticipating the four day weekend that is to come at the end of the week ahead. Four days to sleep in and do little errands. Yippee. I am also looking forward to Friday off for my next Tysabri infusion. I don't have to take a day off without pay so that works out wonderfully for me. This will be infusion number nine or ten; I'm not sure which.
I haven't been writing on here much because work does indeed suck most of the life out of me. Plus, how many ways can I say the day was rotten? Although this last week did have that one spectacular bonus day where my two biggest unruly offenders were gone from the classroom. That truly made for a wonderful day. Were there still some problems? Yes, of course but they were minimal compared to a regular day.
Tomorrow all the unrulies are expected to be back, although one may end up in ISS for the day due to Friday's incidents. A girl can dream, as awful as that may sound. I don't dislike this student but I very much dislike his behavior. I suspect most of his classmates dislike it as well but there are some who see him as the " cool" kid. I just wonder if he's trying out for the Future Inmates of America program. Sigh...
I haven't been writing about MS a lot either because I seem to be doing okay. I am noticing some fatigue as the week goes on and I am napping some days after work. I am working hard at school so I can leave as early as possible. That allows me to get home and nap and get some dinner before it's too late. I'm going to bed somewhere between 8:30 and 9:15 p.m. My alarm goes off around 5:20 a.m. and I seem to be getting out of bed without a lot of problems. Would I like to sleep longer? You betcha but I get up and drag myself into the shower.
So the sleep is good, the getting up is okay, and getting through the day is sometimes a challenge but I am doing it. One day at a time is what I seem to focus on. It's much more palatable that way, taken in twenty-four hour increments.
It looks like Tysabri is doing its job along with my merry band of daily meds. And so it goes.
Sunday, April 26, 2009
Ramblings
Work aka School
I went to school on Friday and worked for about four hours. I got my computer and copier passwords restored and looked up some information for my going back to work on Friday. Right this moment it's freaking me out so I imagine that on Thursday evening I'm going to be needing every bit of Xanax I can get my hands on.
I saw the kids for a few minutes as it was a half day for conferences (I'm sooooooo sad I missed P-T conferences. NOT!) Then I went to work in between my sub's two conferences for the afternoon. I organized some papers, threw some stuff out, cleaned a teensy bit, and sent out more papers for copies. I also started writing up my Friday lesson plans. My FRIDAY plans. Oh my gosh, those 5 months went quickly. If you're a praying sort, please pray for me. I know it will be FINE when I get there and drop the Iron Curtain but it seems so nerve-wracking rightatthismoment.
Weather
It's been hotter than normal here which is something my body no longer really enjoys. Yesterday, I slept on and off through 6 p.m. and avoided most of the heat. It was supposed to be in the 80s and my MS just last year started to turn on me when it got warmer. Then again I was awake at 3 a.m. and went grocery shopping. Yes, that was 3 in the morning. There were three teenagery types in the store plus me and no waiting in line. Yippee.
Today was only about 60 degrees according to my car. Tolerable. Tomorrow is supposed to be mid-80s. Are you kidding me? This is the end of April and it's central NY where it just snowed two weeks ago. Two weeks ago.
Social gathering aka Food Party
Today I attended a Tastefully Simple (aka Sinful because their stuff is so yummy) party. It's basically a chance for a gaggle of women to get together and eat their brains out as they taste test 22 different items. (Yes, that was twenty-two items! Yummo) My favorite was the almond cake with blackberry preserves mixed in. That was heaven in a bite.
My least fave was the blue cheese dip. I just can't get into blue cheese. Never have and most likely never will. I also wasn't a big fan of their taco type items. Sorry BJM, I know you like that stuff.
Drum roll............ I also partook of a wine slushie at the fiesta. This was the first bit of alcohol in a long time. It was pretty good even though I am not much of a wine drinker (or any other kind of drinker either).
I had a fun time with BJM and some of her family and friends. I pretty much knew everyone and I ordered some things that will require either mixing and/or baking. Bet you thought I couldn't do that, did you? I can, I just don't.
Other stuff
I do have Tysabri #8 coming up on Tuesday so I can sneak that in right before I have to go back to work. That's one less day I'll have to take off without pay for now so I'm delighted. I hope I will only have to take one day off in May to get it done and June should find us out of school before that next one is due.
I have no idea what else to say so this is it.
I went to school on Friday and worked for about four hours. I got my computer and copier passwords restored and looked up some information for my going back to work on Friday. Right this moment it's freaking me out so I imagine that on Thursday evening I'm going to be needing every bit of Xanax I can get my hands on.
I saw the kids for a few minutes as it was a half day for conferences (I'm sooooooo sad I missed P-T conferences. NOT!) Then I went to work in between my sub's two conferences for the afternoon. I organized some papers, threw some stuff out, cleaned a teensy bit, and sent out more papers for copies. I also started writing up my Friday lesson plans. My FRIDAY plans. Oh my gosh, those 5 months went quickly. If you're a praying sort, please pray for me. I know it will be FINE when I get there and drop the Iron Curtain but it seems so nerve-wracking rightatthismoment.
Weather
It's been hotter than normal here which is something my body no longer really enjoys. Yesterday, I slept on and off through 6 p.m. and avoided most of the heat. It was supposed to be in the 80s and my MS just last year started to turn on me when it got warmer. Then again I was awake at 3 a.m. and went grocery shopping. Yes, that was 3 in the morning. There were three teenagery types in the store plus me and no waiting in line. Yippee.
Today was only about 60 degrees according to my car. Tolerable. Tomorrow is supposed to be mid-80s. Are you kidding me? This is the end of April and it's central NY where it just snowed two weeks ago. Two weeks ago.
Social gathering aka Food Party
Today I attended a Tastefully Simple (aka Sinful because their stuff is so yummy) party. It's basically a chance for a gaggle of women to get together and eat their brains out as they taste test 22 different items. (Yes, that was twenty-two items! Yummo) My favorite was the almond cake with blackberry preserves mixed in. That was heaven in a bite.
My least fave was the blue cheese dip. I just can't get into blue cheese. Never have and most likely never will. I also wasn't a big fan of their taco type items. Sorry BJM, I know you like that stuff.
Drum roll............ I also partook of a wine slushie at the fiesta. This was the first bit of alcohol in a long time. It was pretty good even though I am not much of a wine drinker (or any other kind of drinker either).
I had a fun time with BJM and some of her family and friends. I pretty much knew everyone and I ordered some things that will require either mixing and/or baking. Bet you thought I couldn't do that, did you? I can, I just don't.
Other stuff
I do have Tysabri #8 coming up on Tuesday so I can sneak that in right before I have to go back to work. That's one less day I'll have to take off without pay for now so I'm delighted. I hope I will only have to take one day off in May to get it done and June should find us out of school before that next one is due.
I have no idea what else to say so this is it.
Friday, April 17, 2009
Me vs. medication and insurance
I just finished taking my nightly cocktail of 5 different medications which in turn becomes seven and a half pills. My neuro upped my Requip at the beginning of the month to help with my restless leg twitches so I take a pill and a half now. It's a good thing I just took it because my legs are starting to bounce and those muscles are ready to kick it up and do a cha cha cha in my calves.
In the morning I take four-five other medications (5 when I'm working) which turns out to be 6 pills spread out over the morning.
I'm also supposed to take a multi-vitamin, Omega-3 fish oil capsules, and a heavy duty Vitamin D3 daily.
Hello my name is Weeble and I'm a pillaholic.
I take meds to go to sleep, to avoid pain, to help with depression and anxiety, to calm my legs, to lower my blood pressure, to wake up and stay alert. Name it and I probably have it covered. I also take Tysabri monthly instead of the daily Copaxone shots for two years and an almost year long attempt at Rebif three-times-a-week.
I try not to think about how much my insurance is paying for these various medications. I'm pretty sure my insurance has a cap on it of a million or two. I wonder how long I can keep up with the pill and Tysabri train before the train is no longer able to leave the station. Does anyone else out there with MS or other medical issues ever think about this stuff? What will I do if I eventually hit the top of my limit? I know it won't be this year or next but it could happen.
I'm already paying a lot out of pocket for Tysabri and I just got a bill from OT I had this past summer for $155. I know how much some of my meds cost compared to what I pay for them. Thankfully, we have good prescription benefits where I work. Knock on wood. But still...
Just some things that have been on my mind recently. I have been thinking that maybe I should consider participating in a drug trial. You might get a placebo and you might not but all the costs are covered including doctor visits and MRIs. For now, I will stick with Tysabri and my pills.
Anyone have any thoughts on any of this?
In the morning I take four-five other medications (5 when I'm working) which turns out to be 6 pills spread out over the morning.
I'm also supposed to take a multi-vitamin, Omega-3 fish oil capsules, and a heavy duty Vitamin D3 daily.
Hello my name is Weeble and I'm a pillaholic.
I take meds to go to sleep, to avoid pain, to help with depression and anxiety, to calm my legs, to lower my blood pressure, to wake up and stay alert. Name it and I probably have it covered. I also take Tysabri monthly instead of the daily Copaxone shots for two years and an almost year long attempt at Rebif three-times-a-week.
I try not to think about how much my insurance is paying for these various medications. I'm pretty sure my insurance has a cap on it of a million or two. I wonder how long I can keep up with the pill and Tysabri train before the train is no longer able to leave the station. Does anyone else out there with MS or other medical issues ever think about this stuff? What will I do if I eventually hit the top of my limit? I know it won't be this year or next but it could happen.
I'm already paying a lot out of pocket for Tysabri and I just got a bill from OT I had this past summer for $155. I know how much some of my meds cost compared to what I pay for them. Thankfully, we have good prescription benefits where I work. Knock on wood. But still...
Just some things that have been on my mind recently. I have been thinking that maybe I should consider participating in a drug trial. You might get a placebo and you might not but all the costs are covered including doctor visits and MRIs. For now, I will stick with Tysabri and my pills.
Anyone have any thoughts on any of this?
Wednesday, April 15, 2009
Me vs. Tysabri and other stuff
I called the insurance company this morning and was put on hold for 20 minutes after being switched from one place to another and originally got nowhere. Then I called back and tried some place new in insurance hell and got someone who still put me on hold but who did find an error in my latest EOB. Yippee for me!
This means I don't pay the March bill yet until I get a new EOB with the right figures on it. It also means that I may, repeat may, not have to pay anymore for the Tysabri. That would be great because otherwise I'll be paying $1065.73 for three infusions and that's a thousand dollars that were already being spent on other bills.
I'm still not quite sure what was wrong with the bill because "insurancespeak" is a language I don't know or seem to understand. All I know is that this drug is supposed to be covered and I am just trying to figure out how much I have to pay before insurance fully covers it. Let's all hope it's soon.
I know I'm lucky enough to have a job and good insurance and be allowed to receive Tysabri. I'm trying not to complain too much because I know lots of MSers (anecdotally) who don't have those items working in their favor. I just wish I could afford this medicine more easily.
Other stuff
My dad has his surgery scheduled for May 4th. Now they think he might not even need to stay overnight! Amazing, huh?
More other stuff
I wrote my letter to the superintendent today stating that I am coming back to work on May 1st. I only have two release notes from medical providers as I suspect the third is taking an extended vacation that coincides with Spring break. But, the letter is written and enveloped (I just made that word up! Wait, spell check didn't catch it, so it must be a real word. Major bummer.) and ready for tomorrow's mail.
More other other stuff
There's someone out there who sends me cards occasionally with a lottery scratch off ticket inside. You know who you are, silent reader. I just wanted to publicly say thanks for the cards and the support. I just won $8 thanks to you. I'm a winner!
More and more other stuff
It's a good thing I'm not seeing Mr. Skinny Pants Nutritionist any time soon. I am still under the wagon even though I keep saying I'm going to duct tape myself back to the wagon. It's like I drag myself up on the rope of good intentions and then fall back under the moving wheels. I have permanent wheel tracks squished over my big body.
When will I wrap my mind around the idea that being thin is okay and safe? I know I need to do this for health reasons but my mind wants to hold on to the weight for lots of personal reasons such as safety, a barrier between myself and others, and a way to keep myself pushed away from intimacy (which doesn't always mean $ex folks!). Maybe I need to explore this more in future posts.
That's all I've got for now. Weebs
This means I don't pay the March bill yet until I get a new EOB with the right figures on it. It also means that I may, repeat may, not have to pay anymore for the Tysabri. That would be great because otherwise I'll be paying $1065.73 for three infusions and that's a thousand dollars that were already being spent on other bills.
I'm still not quite sure what was wrong with the bill because "insurancespeak" is a language I don't know or seem to understand. All I know is that this drug is supposed to be covered and I am just trying to figure out how much I have to pay before insurance fully covers it. Let's all hope it's soon.
I know I'm lucky enough to have a job and good insurance and be allowed to receive Tysabri. I'm trying not to complain too much because I know lots of MSers (anecdotally) who don't have those items working in their favor. I just wish I could afford this medicine more easily.
Other stuff
My dad has his surgery scheduled for May 4th. Now they think he might not even need to stay overnight! Amazing, huh?
More other stuff
I wrote my letter to the superintendent today stating that I am coming back to work on May 1st. I only have two release notes from medical providers as I suspect the third is taking an extended vacation that coincides with Spring break. But, the letter is written and enveloped (I just made that word up! Wait, spell check didn't catch it, so it must be a real word. Major bummer.) and ready for tomorrow's mail.
More other other stuff
There's someone out there who sends me cards occasionally with a lottery scratch off ticket inside. You know who you are, silent reader. I just wanted to publicly say thanks for the cards and the support. I just won $8 thanks to you. I'm a winner!
More and more other stuff
It's a good thing I'm not seeing Mr. Skinny Pants Nutritionist any time soon. I am still under the wagon even though I keep saying I'm going to duct tape myself back to the wagon. It's like I drag myself up on the rope of good intentions and then fall back under the moving wheels. I have permanent wheel tracks squished over my big body.
When will I wrap my mind around the idea that being thin is okay and safe? I know I need to do this for health reasons but my mind wants to hold on to the weight for lots of personal reasons such as safety, a barrier between myself and others, and a way to keep myself pushed away from intimacy (which doesn't always mean $ex folks!). Maybe I need to explore this more in future posts.
That's all I've got for now. Weebs
Tuesday, April 14, 2009
Dad update
My dad was quite sick in January which is why I didn't post much then. I was too busy riding back and forth to the hospital and seeing my brother and sister who both came home from Iraq to see my dad.
Since he has been out of the hospital he has had to wear a special vest pretty much 24/7. The only time he doesn't wear it is in the shower when someone has to stand outside and make sure that he doesn't pass out while in the tub. The vest goes under his clothes and gongs if it comes undone or detects some problem with the set up of the vest making sleeping difficult. Last night it went off four times according to my mother and as one can imagine, who doesn't want to wake up at random times to a gong?
Last week my dad had a MUGA scan and it showed that some things weren't working up to full capacity. That means that some time in the next two weeks he is going back to the hospital for surgery to put in an automatic defibrillator. It's an overnight stay and then he comes home and can't use his left arm for much for 6 weeks. That makes him a little unhappy because it is almost golf season.
It should be a routine procedure and I'll update this when I have an operation date for him.
Off Topic Tysabri Rant
I think I need to call the insurance company because I am still paying for my Tysabri infusions and it's getting cheaper but still putting a strain on my budget. The first month for this year was a straight $500. The second month was $338.88. The third month which I just received an EOB on is something like $230. I don't know about you but this is a lot of extra money coming out of the same paycheck.
I've also had the car in the shop twice since January to the tune of about $1500 total. Where oh where is all this extra money to come from? My hot rich fantasy manlover?
Sigh, things could be much worse. I could have no job and no insurance. I really hate the idea of disability without medical coverage for two years. Thanks federal government for making me feel secure in that if I can't do my job, I can wait two years until you think you can kick in some insurance type monies my way. There are lots of people in this situation and lots that can't even afford Tysabri at all so I shall come to the end of my b!tching now.
Since he has been out of the hospital he has had to wear a special vest pretty much 24/7. The only time he doesn't wear it is in the shower when someone has to stand outside and make sure that he doesn't pass out while in the tub. The vest goes under his clothes and gongs if it comes undone or detects some problem with the set up of the vest making sleeping difficult. Last night it went off four times according to my mother and as one can imagine, who doesn't want to wake up at random times to a gong?
Last week my dad had a MUGA scan and it showed that some things weren't working up to full capacity. That means that some time in the next two weeks he is going back to the hospital for surgery to put in an automatic defibrillator. It's an overnight stay and then he comes home and can't use his left arm for much for 6 weeks. That makes him a little unhappy because it is almost golf season.
It should be a routine procedure and I'll update this when I have an operation date for him.
Off Topic Tysabri Rant
I think I need to call the insurance company because I am still paying for my Tysabri infusions and it's getting cheaper but still putting a strain on my budget. The first month for this year was a straight $500. The second month was $338.88. The third month which I just received an EOB on is something like $230. I don't know about you but this is a lot of extra money coming out of the same paycheck.
I've also had the car in the shop twice since January to the tune of about $1500 total. Where oh where is all this extra money to come from? My hot rich fantasy manlover?
Sigh, things could be much worse. I could have no job and no insurance. I really hate the idea of disability without medical coverage for two years. Thanks federal government for making me feel secure in that if I can't do my job, I can wait two years until you think you can kick in some insurance type monies my way. There are lots of people in this situation and lots that can't even afford Tysabri at all so I shall come to the end of my b!tching now.
Friday, April 3, 2009
MS and me
I was diagnosed with multiple sclerosis in early December of 2005. It took two neurologists to finally diagnose me correctly long after I had thought that MS was my diagnosis. The first neurologist couldn't find anything wrong with me even though I had lesions on my brain. He told me that there was no way I had multiple sclerosis. Maybe I should write and ask him for my money back.
The pictures above are not mine, but they are MRIs (magnetic resonance images) of a person who does have multiple sclerosis. I just searched through google images for an image that would be appropriate to go along with today's post. You can see the lesions or sclerosis (scars) on the brain. They show up as bright white spots. When I look at my own MRIs it seems like everything is lit up or nothing is so I can never tell my own lesions from what should be there. My new neuro's PA has to point them out to me and he does.
I have one lesion in my spine around C3-4 and a handful or more in my brain. The ones in my brain have lessened over time which is possible. Lesions can heal themselves (or remyelinate) but it doesn't mean that they will. I have had a decrease in my number of brain lesions so that means some of mine have remyelinated. My spinal lesion has been there since the 2005 diagnosis so that one appears to have staying power.
When I was originally diagnosed, after three days in the hospital and one botched LP (lumbar puncture aka spinal tap) and one done under fluoroscopy (X-ray guided) and a bazillion other tests, I went on Copaxone. Copaxone is a daily MS med that comes in injectable form. Yep, that means that you give yourself a shot every day and remind yourself every day that there is something going on in your body that can pretty much do whatever it wants to do. Two of my greatest fears are waking up blind in one eye or paralyzed on one or both sides. Sometimes MS manifests itself that quickly, one moment fine and the next with a big problem.
For some people there is a denial stage when they are first diagnosed. For me, it was more of a "Finally!" moment, one I had been searching for for one year. I presented with lots of various MS symptoms starting in December of 2004. Some symptoms started long before that, primarily fatigue which has been a problem of mine since high school. My first major symptoms were weakness, numbness, difficulty walking, nystagmus (eyes jumping from left to right), dizziness, and a weird variation of L'hermitte's sign which was like an electrical current passing through my entire body which would render me unable to move for about 15-30 minutes. All that and there was nothing wrong with me!
Those first two years of being diagnosed, and most definitely the first year, found me often online at a community called MSWorld.org. It was a place where I could go and ask questions of other MSers and feel like I belonged. No one in my family had had MS and my mom didn't even believe I had MS at first, even after the neurologist diagnosed me. (Not to mention that no one in my family came to see me in the hospital for three days and they lived 50 minutes away. I drove myself to and from the hospital.) That site was a godsend for me. I also found MS blogs that were another source of inspiration.
I no longer have to go to those sites every day like I did in the beginning. I am a person with MS, an MSer, but I am also a writer, a teacher, and a woman who is closing in on 40. MS isn't my whole life anymore but it does affect my life on a daily basis. I take a number of pills in the morning and at night to control my symptoms. Lately the pills haven't worked as well because I am often not able to sleep throughout the entire night and my legs have become more restless. I also am out of work on a medical leave that ends on 1 May. I worry about my cognitive skills that affect my writing on here. (You get the cleaned up and edited version.)
I also no longer take Copaxone daily. I switched to another medication called Rebif, a three-times-a-week injectable medication known as an interferon. I am now on a third injectable med called Tysabri. It comes in an IV infusion form once every four weeks. As I type I can look down at my right hand and see a slight bruise from a blown vein. On my left hand I have a much larger bruise on top of my hand where I had a successful infusion on Tuesday.
I have MS and it has me. I am a blogger with MS but I write about lots of things. If you have any questions about multiple sclerosis please ask me. I'll do my best to answer them. Thanks for reading.
PS: I need to send a shout out to my sister, CNS, who is going to make a monthly donation to the National MS Society. You rock, sissy. Ditto.
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