I'm talking about the blog look. I may get sick of it soon, but hey, I made it myself, and now that I have the hang of it, you probably won't ever recognize the joint when you come back. I'm not one of those women who take forever getting ready to go out, trying on every dress she owns. But I am like that with web design...I just hadn't subjected my blog to it before now.
I'm not sure if I'm keeping the bow thingie doos, because I'm really not all that frilly froo froo, but I thought they looked nice for now.
It was so easy to incorporate the background and logo I wish I had done it a long time ago.
If anyone else wants their blog dressed up, just leave a comment. Let me practice on you for free before I start charging for blogger templates on my site. LOL Hey, graphic design has been my life. Ya gotta make a buck somehow.
Let me know what you think of the new look and if I should can the bows.
Tomorrow is my birthday, so be nice. :D
My story of being a hypochondriac, an MS patient, and a guinea pig. NOTE: After 16 years on Fingolimod, I'm starting my self-designed study to taper off the drug while avoiding the now well-documented "rebound relapse" phenomenon. I'll be writing about my journey on SubStack and you can find it here: https://farewellfingolimod.substack.com/
Friday, January 30, 2009
Wednesday, January 28, 2009
Update on the new look and the website...
Okay, after totally freaking out because the new look I had chosen was keeping the blog from functioning correctly, I finally got everything straightened out and back to somewhat "normal" although I still have to add all my sidebar stuff back in, and I'm not really thrilled with the background image or the text layout/style, but this will have to do for now.
Was that a long enough sentence for you? Hope you weren't reading out loud because you probably had to take a few breaths. Sorry.
The website is still in my name but is being held hostage until I pay up. Funny thing about that is that my web host purchased it on my behalf and I can't sign into what is presumably my own account in order to renew.
Emails have been sent.
If anyone knows of a great site for free blogger templates that actually WORK and don't return error messages when you try to install them or break when you try to use them, by all means, POST A LINK. Please?
My best buddy and I have a design site where we do templates for BISI (www.BuyItSellIt.com) stores and Zen-Carts. I'm making a mental note that I need to add Blogger templates to the lineup since I was thoroughly disgusted with the lack of results that googling "Blogger templates" returned. Time to fill the niche.
:)
Was that a long enough sentence for you? Hope you weren't reading out loud because you probably had to take a few breaths. Sorry.
The website is still in my name but is being held hostage until I pay up. Funny thing about that is that my web host purchased it on my behalf and I can't sign into what is presumably my own account in order to renew.
Emails have been sent.
If anyone knows of a great site for free blogger templates that actually WORK and don't return error messages when you try to install them or break when you try to use them, by all means, POST A LINK. Please?
My best buddy and I have a design site where we do templates for BISI (www.BuyItSellIt.com) stores and Zen-Carts. I'm making a mental note that I need to add Blogger templates to the lineup since I was thoroughly disgusted with the lack of results that googling "Blogger templates" returned. Time to fill the niche.
:)
Does this template make my butt look big?
Yes, it's still just me, but in a new party dress.
I had to remove the old one because the background image was one I made and used the word "www.meandmyms.org" repeatedly throughout. Well, since the website died a horrible, painful death, I didn't want to be reminded of it daily.
You will notice all my wigamajigs are missing from the sidebar and I will work furiously one of these days to get them all added back in. I already worked furiously to save them and I'm sick of messing with it right this second.
The reason meandmyms.org exists no more is due to the fact that, although I got repeated reminders via email from some site I've never heard of that my domain name was about to expire, I couldn't figure out where the heck I bought the domain from so that I could renew it.
Being the professional procrastinator that I am, I successfully put off doing anything about it until one day I went to the site and some other graphic was up there, with a bunch of bogus "click me" links, pretending to be a site about MS.
There's a picture of this smiling college coed on it who seems to be mocking me whenever I go there. My blood is boiling over my site name being snatched up within seconds of expiration.
Oh well, let them try to sell the grammatically incorrect stupid site name to someone else! Hey, I know! Maybe all those russian spammers that had invaded the message board to post porno videos might want to buy it?? (part of the reason I wasn't in a big hurry to renew the domain).
I'll have to let my neuro know, tho, because he had admin privileges and had some pages of MS info hosted there. Oh well, maybe that coed will tell him where his pages went.
So, with that, a chapter in my MS life closes. The message board is officially dead.
But my blog is reborn. :-) And isn't she a cutie?? I google "free blogger templates" and visited a bunch of sites before finding this one over at:
(this is where I would have put the link but I closed that browser window and no longer remember where I got the template. oops. my bad. Perhaps they have their credit in the footer if you are interested in dolling up your blog too.)
Our Fingo Heads Yahoo Group is going strong, tho. Spammers can't get in, so we chit chat to our heart's content.
Now to figure out why all the little tabs on the left of the templates say "undefined".
Please pay no attention to the woman behind the curtain....
Back with news soon.
I had to remove the old one because the background image was one I made and used the word "www.meandmyms.org" repeatedly throughout. Well, since the website died a horrible, painful death, I didn't want to be reminded of it daily.
You will notice all my wigamajigs are missing from the sidebar and I will work furiously one of these days to get them all added back in. I already worked furiously to save them and I'm sick of messing with it right this second.
The reason meandmyms.org exists no more is due to the fact that, although I got repeated reminders via email from some site I've never heard of that my domain name was about to expire, I couldn't figure out where the heck I bought the domain from so that I could renew it.
Being the professional procrastinator that I am, I successfully put off doing anything about it until one day I went to the site and some other graphic was up there, with a bunch of bogus "click me" links, pretending to be a site about MS.
There's a picture of this smiling college coed on it who seems to be mocking me whenever I go there. My blood is boiling over my site name being snatched up within seconds of expiration.
Oh well, let them try to sell the grammatically incorrect stupid site name to someone else! Hey, I know! Maybe all those russian spammers that had invaded the message board to post porno videos might want to buy it?? (part of the reason I wasn't in a big hurry to renew the domain).
I'll have to let my neuro know, tho, because he had admin privileges and had some pages of MS info hosted there. Oh well, maybe that coed will tell him where his pages went.
So, with that, a chapter in my MS life closes. The message board is officially dead.
But my blog is reborn. :-) And isn't she a cutie?? I google "free blogger templates" and visited a bunch of sites before finding this one over at:
(this is where I would have put the link but I closed that browser window and no longer remember where I got the template. oops. my bad. Perhaps they have their credit in the footer if you are interested in dolling up your blog too.)
Our Fingo Heads Yahoo Group is going strong, tho. Spammers can't get in, so we chit chat to our heart's content.
Now to figure out why all the little tabs on the left of the templates say "undefined".
Please pay no attention to the woman behind the curtain....
Back with news soon.
Friday, January 16, 2009
Weird Question of the Day
Okay, I just have to know...
Have any of you out there in cyber land ever pulled a muscle in your mouth? I warned you it was a weird question.
I was eating some peanut butter off a spoon because right now (for SB diet Phase I) I can't have bread (and probably not peanut butter either but I didn't bother to check) and I was all out of eggs and it's too cold to go buy more, hence the peanut butter covered spoon. Anyhow, I was licking away when, in the underside of my tongue to the floor of my mouth, I got this terrible charlie horse feeling.
Never having had a cramp in my tongue, I tried to say "Owwwww!" but that hurt, so I settled for doing this little hopping dance while poking furiously at the offending muscle (or mouth part) and trying to relieve it of the pain by massaging it.
What a mess. Peanut butter all over my finger, the spoon summarily dropped on the coffee table, abandoned and smearing it's sticky contents around. Hopping in pain and trying to figure out just what had happened to my mouth, the only thing I can come up with is that I got a charlie horse while trying to lick the peanut butter off the spoon.
Now, I KNOW I'm out of shape, but come ON! My mouth muscles are the one set of muscles I give a strenuous workout daily. Whether eating or "flapping my jaws" as John so delicately puts it, my mouth is in constant motion.
The pain has subsided, sort of. It still feels "tender" for lack of a better word. Like the pain is right there, waiting to be felt again if I move something wrong.
The peanut butter spoon is now abandoned in the sink and I'm not saying, eating or drinking anything until this feels normal again. The only thing I'm doing is sticking my tongue out every once in a while to see if it still hurts that bad (I'm a glutton for pain, what can I say?)
Anyhow. I really don't know what that was, but it hurt like the Dickens. Probably like the Charles Dickens (or maybe his horse, get it? Charlie horse? booo hisss I'll be here all week, don't forget to tip your waitress)
Anyhow, post a comment if you ever pulled your tongue before. :-P Don't post a comment if all you've done is pulled your finger.
Have any of you out there in cyber land ever pulled a muscle in your mouth? I warned you it was a weird question.
I was eating some peanut butter off a spoon because right now (for SB diet Phase I) I can't have bread (and probably not peanut butter either but I didn't bother to check) and I was all out of eggs and it's too cold to go buy more, hence the peanut butter covered spoon. Anyhow, I was licking away when, in the underside of my tongue to the floor of my mouth, I got this terrible charlie horse feeling.
Never having had a cramp in my tongue, I tried to say "Owwwww!" but that hurt, so I settled for doing this little hopping dance while poking furiously at the offending muscle (or mouth part) and trying to relieve it of the pain by massaging it.
What a mess. Peanut butter all over my finger, the spoon summarily dropped on the coffee table, abandoned and smearing it's sticky contents around. Hopping in pain and trying to figure out just what had happened to my mouth, the only thing I can come up with is that I got a charlie horse while trying to lick the peanut butter off the spoon.
Now, I KNOW I'm out of shape, but come ON! My mouth muscles are the one set of muscles I give a strenuous workout daily. Whether eating or "flapping my jaws" as John so delicately puts it, my mouth is in constant motion.
The pain has subsided, sort of. It still feels "tender" for lack of a better word. Like the pain is right there, waiting to be felt again if I move something wrong.
The peanut butter spoon is now abandoned in the sink and I'm not saying, eating or drinking anything until this feels normal again. The only thing I'm doing is sticking my tongue out every once in a while to see if it still hurts that bad (I'm a glutton for pain, what can I say?)
Anyhow. I really don't know what that was, but it hurt like the Dickens. Probably like the Charles Dickens (or maybe his horse, get it? Charlie horse? booo hisss I'll be here all week, don't forget to tip your waitress)
Anyhow, post a comment if you ever pulled your tongue before. :-P Don't post a comment if all you've done is pulled your finger.
Was that all a dream? and The Incredible Shrinking Woman
Here it is, another week later and I'm wondering if I just dreamed it all. But for my documenting it here on my blog, it could all have very well been a dream. I'm wondering how much of it was just me being on super high body alert for any possible changes that could signal a relapse.
Then again, I was dropping stuff more often than my usual acceptable level of clumsiness permits.
It's just that nobody from the clinical trial ever called me back and now I can't even trick myself into recreating the symptoms that led me to call them in the first place.
I feel absolutely normal. Well, as normal as I've ever felt which is not to say I actually know what "normal" is. Just normal for me.
I guess maybe by having the trial people ignore me, my brain just said "well if THEY don't think it's worth worrying about, why should I?"
Or maybe it's the diet?...
I started the South Beach Diet on the 5th and I've lost 6lbs so far and feel so much better. I don't have that up and down relationship with carbs and sugar that I was having before. It would zap all my strength after lunch and force me to the recliner for an unavoidable afternoon nap.
I also am not suffering as much from Dunlaps Disease (where my gut "dun lapped" over my pants top, also known as the "Muffin Top Phenomenon").
I only started out at 130, and I know a bunch of you reading this HATE me for thinking that is a Weight Problem, but to me it's all a matter of practicality.
I have no Fat Clothes. And the pants I do own are not the least bit stretchy. When we wrestle, they pin me every time. I can't win. I don't have the strength to struggle with them anyhow.
When you have to pull your pants up to mid-thigh, then jump up and down while inching them higher and then do squats in order to stretch them a little to get over Mt. Buttocks, it's time to cry "Uncle" and call in the big guns.
The big guns are either a) new pair of 5 bedroom/3 bath pants with room for a blossoming butt to grow, or b) join Biggest Loser.
Since I hadn't quite elevated to Biggest Loser status and I don't have two pennies to rub together to spring for a new wardrobe, I decided it was time to "Step away from the table! Come out with your hands up and put the fork down! Your pants DON'T have you surrounded!!"
In our family, for Christmas gift giving, we draw names on Thanksgiving. Then we don't buy for everyone, we only have to get one gift. Except my eldest brother and my Mom both ignore that rule and get everyone something. My brother, when confronted this Christmas with his blatant disregard for The Rule, pronounced candidly that he does it Because He Can! (and that it buys him love). I do love him, but don't tell him or the gift wagon might pack up and move on.
Anyhow, the reason I went so far off topic is what I'm finally getting around to...
We have to make wish lists for Christmas so our Secret Santa knows what we want (for under $25). On my list I had:
But, once again, I digress. My brother passed out his gifts to everyone and I tore into mine.
It was the South Beach Diet book. Well, I knew I'd put on 20 lbs. since I quit smoking, but I thought the baggy shirts (which covered the undoneness of my pants) were cleverly concealing that fact. I was sort of hurt.
"How did you know I wanted a diet book?" I asked, thinking maybe Mom had ratted me out or something. He couldn't possibly have NOTICED I NEEDED to diet.
"It was on your list, stupid."
Okay, he didn't actually say "stupid" but I felt it, so therefore he must have implied it. I had completely forgotten that it was on my list. That was soooo last month and my memory works about this well: 1. I get up and go to get or do something in the other room. 2. I get to the other room and look around, wondering why I am there, and how I got there, with a nagging thought trapped in some vacuum packed area of my mind screaming words I can't understand about something I urgently need to do or get. 3. I shrug and wander back to the computer. 4. I realize what it was I needed to do or get and go do or get it before the thought becomes vacuum packed for freshness again.
For this very reason I have been accused of using the smoke alarm as a timer for my cooking.
Adding "diet book" to my Christmas list was something I'd forgotten as soon as my fingers had left the keyboard.
I read it from cover to cover over the next 2 days and got myself all psyched up and ready to shed those pounds.
Then I realized there was too many Christmas dinner leftovers and a still frozen Marie Callender's Dutch Apple pie in the freezer that cost me seven bucks and I sure wasn't going to waste (waist?) that. Not even if it meant wearing the big luxurious bathrobe (my brother also gave me for Christmas) 24/7.
The diet began officially on 1/5. The Monday after all the holidays were officially over.
I have never eaten this much salad or broccoli or cauliflower in my entire life.
Then I learned that the one juicy peach I was having instead of the 3 scoops of ice cream with the chocolate sauce, Cool Whip and Trail Mix was actually forbidden in Phase I. I must have skimmed right over the NO FRUIT rule.
Well, sorry Dr. Agatston, you write a mean diet book, but you'll take that peach from me when you pry the pit from my big fat hand. (might not be too hard given my increased weakness lately, but neve rmind about that). I cheat with a peach and it's a whole lot better for me than Death By Chocolate.
That's probably why it's only 6 lbs. I've lost and not 10, but I'm in no hurry. This is my first diet ever. Until I had my first child at 21 I never broke 100 lbs. Then, during my whole smoking career, I never broke 120, and mostly hung out around 110.
I gave up cigarettes a year and a half ago going cold turkey and what do I get rewarded with? 20 new lbs, and none of it in the right spots to make me "curvaceous". Mainly it was more of a frumpy look I was apparently going for. New Age Dough Boy.
So. That's where I am. 6lbs less of me than when I was writing stuff before Christmas. Does my writing seem lighter to you? How about from this angle? Does this sentence make my butt look big? Or is it just my big butt that makes my butt look big?
Hopefully, next time I write it will be from a pair of my pants that no longer has me in a bear hug, and a stomach that stays put behind them.
Man, what I wouldn't give for a Dunkin Donut's double chocolate donut right about now.
Time to go scramble some eggs. (blech)
Until next time... try and stay relapse-free and vacuum packed for freshness, would ya?
Then again, I was dropping stuff more often than my usual acceptable level of clumsiness permits.
It's just that nobody from the clinical trial ever called me back and now I can't even trick myself into recreating the symptoms that led me to call them in the first place.
I feel absolutely normal. Well, as normal as I've ever felt which is not to say I actually know what "normal" is. Just normal for me.
I guess maybe by having the trial people ignore me, my brain just said "well if THEY don't think it's worth worrying about, why should I?"
Or maybe it's the diet?...
I started the South Beach Diet on the 5th and I've lost 6lbs so far and feel so much better. I don't have that up and down relationship with carbs and sugar that I was having before. It would zap all my strength after lunch and force me to the recliner for an unavoidable afternoon nap.
I also am not suffering as much from Dunlaps Disease (where my gut "dun lapped" over my pants top, also known as the "Muffin Top Phenomenon").
I only started out at 130, and I know a bunch of you reading this HATE me for thinking that is a Weight Problem, but to me it's all a matter of practicality.
I have no Fat Clothes. And the pants I do own are not the least bit stretchy. When we wrestle, they pin me every time. I can't win. I don't have the strength to struggle with them anyhow.
When you have to pull your pants up to mid-thigh, then jump up and down while inching them higher and then do squats in order to stretch them a little to get over Mt. Buttocks, it's time to cry "Uncle" and call in the big guns.
The big guns are either a) new pair of 5 bedroom/3 bath pants with room for a blossoming butt to grow, or b) join Biggest Loser.
Since I hadn't quite elevated to Biggest Loser status and I don't have two pennies to rub together to spring for a new wardrobe, I decided it was time to "Step away from the table! Come out with your hands up and put the fork down! Your pants DON'T have you surrounded!!"
In our family, for Christmas gift giving, we draw names on Thanksgiving. Then we don't buy for everyone, we only have to get one gift. Except my eldest brother and my Mom both ignore that rule and get everyone something. My brother, when confronted this Christmas with his blatant disregard for The Rule, pronounced candidly that he does it Because He Can! (and that it buys him love). I do love him, but don't tell him or the gift wagon might pack up and move on.
Anyhow, the reason I went so far off topic is what I'm finally getting around to...
We have to make wish lists for Christmas so our Secret Santa knows what we want (for under $25). On my list I had:
- A one touch can opener so I could throw my hand crank one (which has been known to cause me to creatively make up never before heard swear word combinations).
- A bathroom scale. (so I can throw away the one that had the clear plastic window with the pointer painted on it broken years ago so my weight is a rough guestimate due to John using a Sharpie and drawing a little arrow where he thought the pointer should be onto the metal that surrounds the hole where the window once was.)
- A diet book.
- Probably something else I can't remember.
But, once again, I digress. My brother passed out his gifts to everyone and I tore into mine.
It was the South Beach Diet book. Well, I knew I'd put on 20 lbs. since I quit smoking, but I thought the baggy shirts (which covered the undoneness of my pants) were cleverly concealing that fact. I was sort of hurt.
"How did you know I wanted a diet book?" I asked, thinking maybe Mom had ratted me out or something. He couldn't possibly have NOTICED I NEEDED to diet.
"It was on your list, stupid."
Okay, he didn't actually say "stupid" but I felt it, so therefore he must have implied it. I had completely forgotten that it was on my list. That was soooo last month and my memory works about this well: 1. I get up and go to get or do something in the other room. 2. I get to the other room and look around, wondering why I am there, and how I got there, with a nagging thought trapped in some vacuum packed area of my mind screaming words I can't understand about something I urgently need to do or get. 3. I shrug and wander back to the computer. 4. I realize what it was I needed to do or get and go do or get it before the thought becomes vacuum packed for freshness again.
For this very reason I have been accused of using the smoke alarm as a timer for my cooking.
Adding "diet book" to my Christmas list was something I'd forgotten as soon as my fingers had left the keyboard.
I read it from cover to cover over the next 2 days and got myself all psyched up and ready to shed those pounds.
Then I realized there was too many Christmas dinner leftovers and a still frozen Marie Callender's Dutch Apple pie in the freezer that cost me seven bucks and I sure wasn't going to waste (waist?) that. Not even if it meant wearing the big luxurious bathrobe (my brother also gave me for Christmas) 24/7.
The diet began officially on 1/5. The Monday after all the holidays were officially over.
I have never eaten this much salad or broccoli or cauliflower in my entire life.
Then I learned that the one juicy peach I was having instead of the 3 scoops of ice cream with the chocolate sauce, Cool Whip and Trail Mix was actually forbidden in Phase I. I must have skimmed right over the NO FRUIT rule.
Well, sorry Dr. Agatston, you write a mean diet book, but you'll take that peach from me when you pry the pit from my big fat hand. (might not be too hard given my increased weakness lately, but neve rmind about that). I cheat with a peach and it's a whole lot better for me than Death By Chocolate.
That's probably why it's only 6 lbs. I've lost and not 10, but I'm in no hurry. This is my first diet ever. Until I had my first child at 21 I never broke 100 lbs. Then, during my whole smoking career, I never broke 120, and mostly hung out around 110.
I gave up cigarettes a year and a half ago going cold turkey and what do I get rewarded with? 20 new lbs, and none of it in the right spots to make me "curvaceous". Mainly it was more of a frumpy look I was apparently going for. New Age Dough Boy.
So. That's where I am. 6lbs less of me than when I was writing stuff before Christmas. Does my writing seem lighter to you? How about from this angle? Does this sentence make my butt look big? Or is it just my big butt that makes my butt look big?
Hopefully, next time I write it will be from a pair of my pants that no longer has me in a bear hug, and a stomach that stays put behind them.
Man, what I wouldn't give for a Dunkin Donut's double chocolate donut right about now.
Time to go scramble some eggs. (blech)
Until next time... try and stay relapse-free and vacuum packed for freshness, would ya?
Friday, January 9, 2009
No new is good news?
I called the trial nurse on Wednesday morning, I think it was, to tell her I thought I was relapsing. Maybe it was due to the fact that I claimed it was "so mild I was debating if it was all in my head at times", but I haven't heard a single peep in the way of a reply. Last I was told was "I'll pass this info on to the neurologist and we will discuss what to do."
That must be one helluva meeting if they are all still talking about it.
I suspect the info got shuffled around or the Post-It fell off the computer screen or something. They just forgot about me. Good thing I'm not having a severe attack. Geeze.
Maybe they figure if I'm saying there's no way I want to take steroids that there's not anything they would have done otherwise, so why bother. But you would think that for the study's sake they would want to give me a once over, cursory exam in person, wouldn't you?
And a bit of good news... I never had to call about the HSV because what I thought was the prodrome like syndrome of tingling/stinging sensation never materialized into anything. Whew.
I have been known, in the past, to be able to talk my body right out of having a HSV relapse, so maybe that's what that was.
The MS thing, although I never did talk myself out of it, seems to have plateaued. The itching is subsiding and my hands, although they still tingle slightly, are grasping better (or at least not worse).
The overall fatigue is still with me. Not the floor jack feeling in my arms, thankfully, but I'm like a walking zombie all day. I'm so utterly exhausted I'm just cruising on auto pilot.
I'll post back if they ever decide to call. So far I'm hoping that no phone call means "don't sweat the small stuff".
At least that's how I'm taking it and I'm going to try to quit worrying.
I think I'll go take (another) nap. Yawn.
That must be one helluva meeting if they are all still talking about it.
I suspect the info got shuffled around or the Post-It fell off the computer screen or something. They just forgot about me. Good thing I'm not having a severe attack. Geeze.
Maybe they figure if I'm saying there's no way I want to take steroids that there's not anything they would have done otherwise, so why bother. But you would think that for the study's sake they would want to give me a once over, cursory exam in person, wouldn't you?
And a bit of good news... I never had to call about the HSV because what I thought was the prodrome like syndrome of tingling/stinging sensation never materialized into anything. Whew.
I have been known, in the past, to be able to talk my body right out of having a HSV relapse, so maybe that's what that was.
The MS thing, although I never did talk myself out of it, seems to have plateaued. The itching is subsiding and my hands, although they still tingle slightly, are grasping better (or at least not worse).
The overall fatigue is still with me. Not the floor jack feeling in my arms, thankfully, but I'm like a walking zombie all day. I'm so utterly exhausted I'm just cruising on auto pilot.
I'll post back if they ever decide to call. So far I'm hoping that no phone call means "don't sweat the small stuff".
At least that's how I'm taking it and I'm going to try to quit worrying.
I think I'll go take (another) nap. Yawn.
Thursday, January 8, 2009
I was wondering what I should blog about...
...when my body decided to respond with it's first MS attack since starting the trial. Sheesh! Guess I should have thought up something on my own sooner. I'll know not to go on hiatus again, that's for sure.
And to top that off, I'm going for the real drama and digging deep by having a HSV attack concurrently. Hence the reason I'm writing this at 4:30ish a.m.
I guess my body felt I had deprived my readers of any real interesting Fingolimod related MS news for too long. It all sounds way more dramatic than it is, tho, trust me.
I knew my winning streak would eventually have to come to an end. Nobody ever said Fingolimod cures MS no matter how much I had convinced myself that it had cured mine.
It all started a short while before Christmas. It could have been a week before or just a couple days. Anyhow, it wasn't any big major thing that slammed me to the floor and made me drag out the calendar to circle the date in red or anything. In fact, the symptoms have been so mild that I had to pick a day out of a hat to claim that's When It All Started. I picked Dec. 22 since I like that date and I had said "a few days before Christmas" when reporting this to my study nurse.
I started getting itchy on my neck. I know MS is different for everyone, but I think I probably have some of the weirdest symptoms possible. When a new attack starts, I get itchy. Real itchy. Either on my scalp, or someplace along my spine. Thankfully not many attacks have me itching between my shoulder blades where it's so hard to reach. Small favors, eh?
Anyhow, my neck was itching. Right at the base of my skull on the left side of my spine. I would scratch it and forget it -- kind of like all my losing Lotto tickets. But then a few days later I awoke with Weird Symptom #2. Painful tenderness under my breasts.
If any of you women out there have had tender boobs at That Time of the Month, then you know what I mean. They hurt to move, let alone wear a bra. Before I got into this study, my breasts hurt like that pretty much non-stop for months, maybe years. I don't remember, I just know I was miserable in my own private hell that way. It's not like someone can say "Hey Jeri!! I haven't seen you in a while! How've you been??" and I can answer "Oh great! Except for the fact that my boobs hurt so bad I feel like I've taken a bunch of punches to the chest from Evander Holyfield or something." No, pain like that you suffer alone, elbows out to protect against accidental contact with anything that might bring that pain more sharply into focus briefly.
And the tenderness can't be due to my "time of the month" unless a) my time lasted FOR months at a time, or b) I was having ghost pains to female parts I no longer possess since having a hysterectomy (they sure like to use "y" in medical terminology a lot, don't they?).
I'm suspecting there are lymph glands in that area, just beneath the bottom of the breast and circling up to under your arm (where I know for SURE there are lymph nodes). And I suspect that the simmering inflammation I had experienced for years with my MS prior to this study was the reason for the constant pain which miraculously disappeared when I started the FTY720.
Until now. Well, really, until 5 days ago when I started back on the Fish Oil I had stopped. I was taking it for quite a while until I ran out and neglected to buy more a couple months ago. I read something the other day about how Omega 3 is a better anti inflammatory than Ibuprofen, so I decided to snitch some of John's capsules.
He bought the stuff off the TV ad that claims to be better than regular Fish Oil and you can get 3 bottles for the price of one or some such crap. All I know is I heard him arguing with the people on the phone about how they charged his credit card for a hundred bucks and sent him 3 more bottles before he was even finished with the first 3. I felt sorry for the verbal beating the person on the other end of the line was taking, but I had no need to ... they were GOOD! Before he ever got off the phone he had settled for removing $50 from the credit card charge and sending a couple more bottles (I guess he forgot how he didn't need the 3 he just got with no prompting).
John can spare a bottle is my point.
After 3 days of the Fish Oil, my breast tenderness was GONE. Now, there's no way to ever know for sure if it would have just gone away spontaneously with no action on my part or not (kind of like the big debate about MS drugs working or not) but nonetheless (I just wanted to type that because I like to run mywordsalltogether like that) it quit.
So there I was, my neck itching on and off, and my boobs hurting. Big MS attack. Ooooo, scary, right? I didn't think so either. So I convinced myself for the past couple of weeks that it was all in my head since so many things are, given I'm a professional hypochondriac and all.
Not so. A new symptom arose, and another old one made a guest appearance.
The old one is the burning, fire-like, don't-know-if-I'm-on-fire-or-standing-in-ice feeling. At a certain *volume* it's not an unpleasant feeling and can keep me feeling warm when it's chilly out, but that's usually only the case when it's first beginning or finally going away. Most of the time it's OH-MY-GOD-THIS-HURTS intensity, which is not as pleasant. Right now it's still vague and interesting.
The new one is issues with my arms. My arms have been pretty much left alone by the MS for the past 10 years, mercifully. So when I've been having trouble even turning a door knob lately, I kind of had to take notice and quit blowing off the whole "is it an attack or isn't it?" issue.
It's really subtle, tho. Like my grasp is a little weaker. I find myself grabbing a doorknob and, with what I think is my usual grip, trying to turn it. My hand slides around it like it's coated with a nonstick surface or something. I get the door open every time, it's just something that made me go "huh" for a second or two.
Then, while holding a bottle of Zephyrhills water I can feel it slide down. Darn, has everything in my world become slippery?? I've dropped a few things but I'm especially vigilant when drinking my coffee in the morning. I really don't want to test out whether or not my lap is numb first thing in the morning by dropping a mug of Folgers on it.
I mentioned all this to my mother, since she's my guru of hypochondria and the one who taught me everything I know. Well, that's not true really. She's not a hypochondriac but more of a Master Worrier.
Anyhow, she got that concerned look on her face and tipped her nose in the air so she could inspect me through her bifocals, like she was going to see something different. Then she started making sure to ask as casually as possible how I was "feeling" every day during our ritual phone calls.
I sometimes feel just fine, but then other times, like when I'm trying to fall asleep, I notice my arms feel like I've been used as a floor jack for a monster truck all day. Extreme muscle fatigue after doing nothing more beyond hoisting Folgers and Zephyrhills to my lips that day. For Cripe's sake (whoever Cripe is) I haven't even been picking up a fork as much lately since I started this South Beach diet on the 1st. (I'll blog that later). How can my arms be so utterly exhausted?
With some sleep, that muscle fatigue fades.
Then I awoke yesterday and my left hand had a charlie horse in it and both hands tingled slightly.
Okay, I get the message. This has GOT to be a new MS attack. And of course my left hand is worse than my right because Murphy and his stupid Laws probably dictate somewhere that if you are left-handed then bad things affect your left side more.
So I made the call. Yesterday morning I called my trial coordinator and told her of my new, not so exciting, symptoms. She asked me to rate the attack from mild to severe and I told her it was extremely mild. So mild as to have had me convinced for the 2 weeks prior that it was all in my head. Well, if the lesion is on my brain, then it technically IS all in my head, but you know what I mean.
She said she would report it to the neuro and get back with me. Nobody has called yet.
That was before I got up earlier at the crack of Let the Cat Out so She'll Shut Up and discovered I'm starting to have a herpes outbreak. Oh YAY! I get to find out what Fingolimod, active MS, and active Herpes all have in common and I'm hoping the punchline isn't "it's gonna kill ya".
I made it through that one Herpes outbreak I had that was prompted by learning the news of the herpes virus related deaths in the fingo study back in Feb 08. Now I guess we have to experiment with herpes, and MS being active while on Fingo. Blessedly, even tho I'm scared crazy about it, both the MS attack and the herpes attack seem to be very mild. Quite possibly due to being on the Fingo in the first place.
I mean, if I have to wonder if I'm having a relapse or not, as compared to before, when I was dragging myself around on one or two canes and not needing to wonder if it's really an MS attack or not, then I guess this Fingolimod is still good stuff! Even tho it apparently didn't CURE my MS <-- a fact over which I'm more than a little miffed (that's too cute a word to mean what it means, isn't it? Sounds like a poodle's reaction or something. Fluffy was miffed.)
I knew the time had to eventually come for my high flying, invincibility cloak of wellness to drop to the floor and unveil the MS monster again, but this time he doesn't seem any more terrifying than Fluffy the Poodle.
I'll be sure to let you all know how it goes. I'll have to wait another 4 hours or so to inform the trial nurse that I'm now having a herpes outbreak too. I bet a get a call back THEN!
And to top that off, I'm going for the real drama and digging deep by having a HSV attack concurrently. Hence the reason I'm writing this at 4:30ish a.m.
I guess my body felt I had deprived my readers of any real interesting Fingolimod related MS news for too long. It all sounds way more dramatic than it is, tho, trust me.
I knew my winning streak would eventually have to come to an end. Nobody ever said Fingolimod cures MS no matter how much I had convinced myself that it had cured mine.
It all started a short while before Christmas. It could have been a week before or just a couple days. Anyhow, it wasn't any big major thing that slammed me to the floor and made me drag out the calendar to circle the date in red or anything. In fact, the symptoms have been so mild that I had to pick a day out of a hat to claim that's When It All Started. I picked Dec. 22 since I like that date and I had said "a few days before Christmas" when reporting this to my study nurse.
I started getting itchy on my neck. I know MS is different for everyone, but I think I probably have some of the weirdest symptoms possible. When a new attack starts, I get itchy. Real itchy. Either on my scalp, or someplace along my spine. Thankfully not many attacks have me itching between my shoulder blades where it's so hard to reach. Small favors, eh?
Anyhow, my neck was itching. Right at the base of my skull on the left side of my spine. I would scratch it and forget it -- kind of like all my losing Lotto tickets. But then a few days later I awoke with Weird Symptom #2. Painful tenderness under my breasts.
If any of you women out there have had tender boobs at That Time of the Month, then you know what I mean. They hurt to move, let alone wear a bra. Before I got into this study, my breasts hurt like that pretty much non-stop for months, maybe years. I don't remember, I just know I was miserable in my own private hell that way. It's not like someone can say "Hey Jeri!! I haven't seen you in a while! How've you been??" and I can answer "Oh great! Except for the fact that my boobs hurt so bad I feel like I've taken a bunch of punches to the chest from Evander Holyfield or something." No, pain like that you suffer alone, elbows out to protect against accidental contact with anything that might bring that pain more sharply into focus briefly.
And the tenderness can't be due to my "time of the month" unless a) my time lasted FOR months at a time, or b) I was having ghost pains to female parts I no longer possess since having a hysterectomy (they sure like to use "y" in medical terminology a lot, don't they?).
I'm suspecting there are lymph glands in that area, just beneath the bottom of the breast and circling up to under your arm (where I know for SURE there are lymph nodes). And I suspect that the simmering inflammation I had experienced for years with my MS prior to this study was the reason for the constant pain which miraculously disappeared when I started the FTY720.
Until now. Well, really, until 5 days ago when I started back on the Fish Oil I had stopped. I was taking it for quite a while until I ran out and neglected to buy more a couple months ago. I read something the other day about how Omega 3 is a better anti inflammatory than Ibuprofen, so I decided to snitch some of John's capsules.
He bought the stuff off the TV ad that claims to be better than regular Fish Oil and you can get 3 bottles for the price of one or some such crap. All I know is I heard him arguing with the people on the phone about how they charged his credit card for a hundred bucks and sent him 3 more bottles before he was even finished with the first 3. I felt sorry for the verbal beating the person on the other end of the line was taking, but I had no need to ... they were GOOD! Before he ever got off the phone he had settled for removing $50 from the credit card charge and sending a couple more bottles (I guess he forgot how he didn't need the 3 he just got with no prompting).
John can spare a bottle is my point.
After 3 days of the Fish Oil, my breast tenderness was GONE. Now, there's no way to ever know for sure if it would have just gone away spontaneously with no action on my part or not (kind of like the big debate about MS drugs working or not) but nonetheless (I just wanted to type that because I like to run mywordsalltogether like that) it quit.
So there I was, my neck itching on and off, and my boobs hurting. Big MS attack. Ooooo, scary, right? I didn't think so either. So I convinced myself for the past couple of weeks that it was all in my head since so many things are, given I'm a professional hypochondriac and all.
Not so. A new symptom arose, and another old one made a guest appearance.
The old one is the burning, fire-like, don't-know-if-I'm-on-fire-or-standing-in-ice feeling. At a certain *volume* it's not an unpleasant feeling and can keep me feeling warm when it's chilly out, but that's usually only the case when it's first beginning or finally going away. Most of the time it's OH-MY-GOD-THIS-HURTS intensity, which is not as pleasant. Right now it's still vague and interesting.
The new one is issues with my arms. My arms have been pretty much left alone by the MS for the past 10 years, mercifully. So when I've been having trouble even turning a door knob lately, I kind of had to take notice and quit blowing off the whole "is it an attack or isn't it?" issue.
It's really subtle, tho. Like my grasp is a little weaker. I find myself grabbing a doorknob and, with what I think is my usual grip, trying to turn it. My hand slides around it like it's coated with a nonstick surface or something. I get the door open every time, it's just something that made me go "huh" for a second or two.
Then, while holding a bottle of Zephyrhills water I can feel it slide down. Darn, has everything in my world become slippery?? I've dropped a few things but I'm especially vigilant when drinking my coffee in the morning. I really don't want to test out whether or not my lap is numb first thing in the morning by dropping a mug of Folgers on it.
I mentioned all this to my mother, since she's my guru of hypochondria and the one who taught me everything I know. Well, that's not true really. She's not a hypochondriac but more of a Master Worrier.
Anyhow, she got that concerned look on her face and tipped her nose in the air so she could inspect me through her bifocals, like she was going to see something different. Then she started making sure to ask as casually as possible how I was "feeling" every day during our ritual phone calls.
I sometimes feel just fine, but then other times, like when I'm trying to fall asleep, I notice my arms feel like I've been used as a floor jack for a monster truck all day. Extreme muscle fatigue after doing nothing more beyond hoisting Folgers and Zephyrhills to my lips that day. For Cripe's sake (whoever Cripe is) I haven't even been picking up a fork as much lately since I started this South Beach diet on the 1st. (I'll blog that later). How can my arms be so utterly exhausted?
With some sleep, that muscle fatigue fades.
Then I awoke yesterday and my left hand had a charlie horse in it and both hands tingled slightly.
Okay, I get the message. This has GOT to be a new MS attack. And of course my left hand is worse than my right because Murphy and his stupid Laws probably dictate somewhere that if you are left-handed then bad things affect your left side more.
So I made the call. Yesterday morning I called my trial coordinator and told her of my new, not so exciting, symptoms. She asked me to rate the attack from mild to severe and I told her it was extremely mild. So mild as to have had me convinced for the 2 weeks prior that it was all in my head. Well, if the lesion is on my brain, then it technically IS all in my head, but you know what I mean.
She said she would report it to the neuro and get back with me. Nobody has called yet.
That was before I got up earlier at the crack of Let the Cat Out so She'll Shut Up and discovered I'm starting to have a herpes outbreak. Oh YAY! I get to find out what Fingolimod, active MS, and active Herpes all have in common and I'm hoping the punchline isn't "it's gonna kill ya".
I made it through that one Herpes outbreak I had that was prompted by learning the news of the herpes virus related deaths in the fingo study back in Feb 08. Now I guess we have to experiment with herpes, and MS being active while on Fingo. Blessedly, even tho I'm scared crazy about it, both the MS attack and the herpes attack seem to be very mild. Quite possibly due to being on the Fingo in the first place.
I mean, if I have to wonder if I'm having a relapse or not, as compared to before, when I was dragging myself around on one or two canes and not needing to wonder if it's really an MS attack or not, then I guess this Fingolimod is still good stuff! Even tho it apparently didn't CURE my MS <-- a fact over which I'm more than a little miffed (that's too cute a word to mean what it means, isn't it? Sounds like a poodle's reaction or something. Fluffy was miffed.)
I knew the time had to eventually come for my high flying, invincibility cloak of wellness to drop to the floor and unveil the MS monster again, but this time he doesn't seem any more terrifying than Fluffy the Poodle.
I'll be sure to let you all know how it goes. I'll have to wait another 4 hours or so to inform the trial nurse that I'm now having a herpes outbreak too. I bet a get a call back THEN!
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