I have been feeling amazing lately. Physically. Yeah, you heard me. No fatigue fog (sucks, sucks, sucks) No cognitive issues. (well, no more than my normal ditzy self) No bad numbness creeping down the side of my body and sending me into a panic attack (hate those)
Nothing. Except a common cold. Seriously??? I feel great and you throw me a freakin cold???? I don't have time for that shit. I really don't. And it's the first day of winter break. A day I love. The high fiving with the teen boyos when I pick them up from exams. The dramatic turning off the alarm for next 3 weeks ritual. Watching old Christmas movies. Drinking hot cocoa. Not getting dressed...... You get my picture.
It's rather humorous. You throw me MS. Give me symptoms and issues all the time at the drop of a hat. Then out of the blue you make me feel great. And boom the next morning you give me a cold.
The ugly red nose, snuffling, Vicks Vapor Rub smelling kind of cold.
But, I still feel better than MS makes me. So take that MS. :)
I was diagnosed with relapsing-remitting Multiple Sclerosis in December 2008. This is my blog about my life living with the roller-coaster world of MS with a little humor and advice thrown in!
Tuesday, December 17, 2013
Monday, December 9, 2013
Always Have Sweat Pants
Isn't it nice when you have a great week? You feel good. The future looks good etc. That has been my week and I hope it keeps on going.
I don't know about everyone else but December is always a busy month. Having kids means December explodes with events, parties, exams, practices. You name it. My days are spent driving, dropping off and picking up. My gas is already double than normal months.
And you know what? I love it. Wouldn't trade it. EVER. Even when I blew up because both of my teens was running in a 5k Saturday morning and youngest zombie realized he had no sweat pants. None. Nothing even close. That morning. 30 minutes before we had to be there. And it was 20 degrees outside. (I really don't know if that's accurate but, it was freakin cold) Seriously?? How could he (I) miss that???
Who the hell doesn't have a pair of sweats laying around??? And he's the youngest. He should have 10 years worth of hand me downs from 2 brothers.
I offered a pair of my warmest yoga pants. Crap, their black no one will notice I said. You would have thought I was asking him to wear my panties the way he reacted.
So, I jumped in my car and verbally blistered both boys about responsibility, thinking ahead, I'm not going to always be able to come to the last minute rescue....(yeah, right)
blah blah blah and drove to corner drugstore. They have crappy sweat pants all freakin year except Saturday.
Onward to Wal-Mart. I'm really on a roll by then.
Pay $20 for a pair of sweatpants. Told youngest they were a Christmas gift and don't expect anything else. (Hey, they all know without enough coffee I will turn into psycho Mom)
Later this week an acquaintance told me she was thrilled to see my boys at the run and how nice and polite they were and so helpful and how much $$ was raised........
Made me feel like an asshole Mom. Teen boys don't think ahead. Maybe it was my fault for not checking his closet. So, maybe I should back it up and get him the matching sweatshirt for Christmas.........
I don't know about everyone else but December is always a busy month. Having kids means December explodes with events, parties, exams, practices. You name it. My days are spent driving, dropping off and picking up. My gas is already double than normal months.
And you know what? I love it. Wouldn't trade it. EVER. Even when I blew up because both of my teens was running in a 5k Saturday morning and youngest zombie realized he had no sweat pants. None. Nothing even close. That morning. 30 minutes before we had to be there. And it was 20 degrees outside. (I really don't know if that's accurate but, it was freakin cold) Seriously?? How could he (I) miss that???
Who the hell doesn't have a pair of sweats laying around??? And he's the youngest. He should have 10 years worth of hand me downs from 2 brothers.
I offered a pair of my warmest yoga pants. Crap, their black no one will notice I said. You would have thought I was asking him to wear my panties the way he reacted.
So, I jumped in my car and verbally blistered both boys about responsibility, thinking ahead, I'm not going to always be able to come to the last minute rescue....(yeah, right)
blah blah blah and drove to corner drugstore. They have crappy sweat pants all freakin year except Saturday.
Onward to Wal-Mart. I'm really on a roll by then.
Pay $20 for a pair of sweatpants. Told youngest they were a Christmas gift and don't expect anything else. (Hey, they all know without enough coffee I will turn into psycho Mom)
Later this week an acquaintance told me she was thrilled to see my boys at the run and how nice and polite they were and so helpful and how much $$ was raised........
Made me feel like an asshole Mom. Teen boys don't think ahead. Maybe it was my fault for not checking his closet. So, maybe I should back it up and get him the matching sweatshirt for Christmas.........
Tuesday, December 3, 2013
Change In Climate
I don't know what it is about traveling north for the holidays. I'm not sure if it's the effing cold (15 degrees the morning we left) or the super darkness. But, all I wanted to do over Thanksgiving was stay in my toasty hotel room and stay under the covers.
Depression was my best friend this week. Maybe it was a combination of my frozen, stiff muscles or that I was at my husband's family. I haven't been in a number of years and I don't see me going again any time soon. The spasticity and stiffness in my leg muscles was so bad that I got in the hotel hot tub. Something I never ever do. (I think all those foaming bubbles are harboring nasty bacteria or some kind of social diseases).
Now that I'm home to 50 & 60 degree weather I'm back to normal. Go figure.
Depression was my best friend this week. Maybe it was a combination of my frozen, stiff muscles or that I was at my husband's family. I haven't been in a number of years and I don't see me going again any time soon. The spasticity and stiffness in my leg muscles was so bad that I got in the hotel hot tub. Something I never ever do. (I think all those foaming bubbles are harboring nasty bacteria or some kind of social diseases).
Now that I'm home to 50 & 60 degree weather I'm back to normal. Go figure.
Friday, November 15, 2013
Super Hero MS Vision?
What is with my MS vision lately??? Although that sounds rather Super Hero-ish I don't think it is. I went early today to do some grocery/Christmas shopping at Sam's and Wal-mart. When I walked in to both stores the brightness or something about the lights almost dropped me to my knees.
Am I a vampire?? no, that's the sun. Is the bright fluorescent lighting messing with my head?? Maybe all the wide-open space?
Whatever it is when I go to those stores of that type my vision gets rather swirly and I just want to cover my eyes. Throw in some vertigo and instant panic and my shopping mood comes to a halt.
Maybe it's not MS. Maybe it's just me. Maybe I have some kind of allergy to discount shopping.
If anyone else with MS has this issue then whew! I feel better. I would google this symptom but I'm not a fan of all thousands of other ailments it might say I have!!
Saturday, November 9, 2013
My Target Military Meltdown
After my teen fool incident yesterday (yes, he came home and apologized and found his Star Wars pen in the bushes.. see last post) I felt some retail therapy was in order. Maybe some some special Christmas gifts for the teen fool. Lol. I can't stay mad at them long. They are so darn funny and cute!
I needed to mail my Christmas gifts to my sweet oldest baby boy overseas. He's in the Navy and if I don't send it this week he won't get it til February. (Lesson learned the hard way last year) I wanted to pick up one more thing. Maybe something Christmasy.
Well, there I am in Target when I am struck by the Christmas spirit in the form of a glittery snowball. That played music!! That had a little 2013 stamped into the base! That suddenly reminded me that my Navy baby will not be back home until next July just briefly. Yes. I will get this for him. So he will hear a little Christmas tune and think of cold weather and snow. And maybe he will think of his family and especially his Mom who cries every week and misses him so much and OMG I have lost it completely in Target. In the Christmas Dept.
I haven't heard his sweet voice in months. We have been able to email about once every two weeks and that's it.
To everyone who witnessed the crazy blonde clutching two snow globes while crying and pretending she wasn't. Who was wiping the snot on her sleeve because she didn't have any tissues on her. I am sorry for my messy display.
I needed to mail my Christmas gifts to my sweet oldest baby boy overseas. He's in the Navy and if I don't send it this week he won't get it til February. (Lesson learned the hard way last year) I wanted to pick up one more thing. Maybe something Christmasy.
Well, there I am in Target when I am struck by the Christmas spirit in the form of a glittery snowball. That played music!! That had a little 2013 stamped into the base! That suddenly reminded me that my Navy baby will not be back home until next July just briefly. Yes. I will get this for him. So he will hear a little Christmas tune and think of cold weather and snow. And maybe he will think of his family and especially his Mom who cries every week and misses him so much and OMG I have lost it completely in Target. In the Christmas Dept.
I haven't heard his sweet voice in months. We have been able to email about once every two weeks and that's it.
To everyone who witnessed the crazy blonde clutching two snow globes while crying and pretending she wasn't. Who was wiping the snot on her sleeve because she didn't have any tissues on her. I am sorry for my messy display.
And to all my fellow Military Moms out there, Thank you for understanding. It sucks.
Teen Fools
Teen Fool
Let me start by saying I love my teens. Surprisingly they don't drive me crazy. Yet. I've been on guard waiting, watching for them to turn into teen fools. You know, belligerent, forgetful, obnoxious, smelly etc. ie. Fools. My oldest did that somewhat so I am prepared.
My 14& 15 are either delayed in that department or heaven forbid not going to become teen fools.......HaHa That's a good one. I'm delusional. Of course they will. It's just a matter of time.
My 15 year old didn't want to turn in Dr. note this morning from being sick yesterday. To me it's a $110 piece of paper saying he didn't feel good yesterday so don't turn us in to the truancy dept.....
Why didn't he want to turn it in? Good question. Who the hell knows. He said he'd do it Monday. Nope, I said "you'll do it today and then you won't have to worry about it".
He got pissed and slammed out the door. Threw his new cereal box toy pen in the bushes. (who knew that teens still love those cheap toys in cereal??)
Now he's texting me saying he doesn't know why it was a big deal (it wasn't. He made it a big deal.) And that maybe he shouldn't go on overnight camping trip tonight. His attempt at reverse psychology? Silly boy. I've got years of that ahead of him. What a twit. I think I'll call his bluff on that one. That will make him think a little and maybe just maybe the almighty Mom is a tad on to him.
Hmmmmm. I don't have girls so I'm putting this one in the "Drama" category.
Or better yet Let The TEEN FOOL games begin..........
My 14& 15 are either delayed in that department or heaven forbid not going to become teen fools.......HaHa That's a good one. I'm delusional. Of course they will. It's just a matter of time.
My 15 year old didn't want to turn in Dr. note this morning from being sick yesterday. To me it's a $110 piece of paper saying he didn't feel good yesterday so don't turn us in to the truancy dept.....
Why didn't he want to turn it in? Good question. Who the hell knows. He said he'd do it Monday. Nope, I said "you'll do it today and then you won't have to worry about it".
He got pissed and slammed out the door. Threw his new cereal box toy pen in the bushes. (who knew that teens still love those cheap toys in cereal??)
Now he's texting me saying he doesn't know why it was a big deal (it wasn't. He made it a big deal.) And that maybe he shouldn't go on overnight camping trip tonight. His attempt at reverse psychology? Silly boy. I've got years of that ahead of him. What a twit. I think I'll call his bluff on that one. That will make him think a little and maybe just maybe the almighty Mom is a tad on to him.
Hmmmmm. I don't have girls so I'm putting this one in the "Drama" category.
Or better yet Let The TEEN FOOL games begin..........
Wednesday, October 30, 2013
Cold Snap
I just came home from sunny warm Florida this weekend to an unexpected cold snap in the old Tennessee Valley. Brrrrrr. Not a fan.
I know heat aggravates most MS'ers but cold weather is my personal nemesis. It makes my muscles tighten and makes my body hurt. Like brittle snap hurt.
So, fall/winter are not my fav seasons physically. Luckily with my shiny new attitude this week (I'm sure will be gone by Friday) I am taking a couple of hot yoga classes which really make my muscles smile and then it's couch/resty time (curse you fatigue) with my favorite heating blanket and Netflix.
I know this is only the beginning of cold weather but I will do everything not to let it touch me. And if I look like a layered bag lady then so be it.
After my diagnosis 5 years ago MS has been a re-learning of my own body. MY body. My own body that I knew so well. And now I don't.
But that's ok. I'm getting the hang of the "new" me. I don't try and push through the pain, fatigue, numbness. It will only bite me in the ass and put me in bed for days. I store up my energy. Use it when it is most important.
I know heat aggravates most MS'ers but cold weather is my personal nemesis. It makes my muscles tighten and makes my body hurt. Like brittle snap hurt.
So, fall/winter are not my fav seasons physically. Luckily with my shiny new attitude this week (I'm sure will be gone by Friday) I am taking a couple of hot yoga classes which really make my muscles smile and then it's couch/resty time (curse you fatigue) with my favorite heating blanket and Netflix.
I know this is only the beginning of cold weather but I will do everything not to let it touch me. And if I look like a layered bag lady then so be it.
After my diagnosis 5 years ago MS has been a re-learning of my own body. MY body. My own body that I knew so well. And now I don't.
But that's ok. I'm getting the hang of the "new" me. I don't try and push through the pain, fatigue, numbness. It will only bite me in the ass and put me in bed for days. I store up my energy. Use it when it is most important.
Saturday, October 12, 2013
Pain In My Neck
Does anyone have that one MS symptom that keeps coming back over and over that sends you over the edge?? This week for me it is the pain (literally) that starts in my neck and radiates up the side of my face to my cheek and down my left arm to the tip of my thumb. And while most symptoms are annoying to me this one absolutely kills me. It's a burning, stinging pain in the neck with numbness and shock waves that go to my hand. Such a pain. I never know if ice or heat is better. Heat feels better but who knows which is better.
Wrapping my hand with a elastic bandage feels good too. Since my arm and hand are numb they feel cold. And the compression helps with the tingling and jarring shock waves.
Well, that's my whining for the week. :)
Wrapping my hand with a elastic bandage feels good too. Since my arm and hand are numb they feel cold. And the compression helps with the tingling and jarring shock waves.
Well, that's my whining for the week. :)
Saturday, October 5, 2013
Just Be Nice
My boys school has a new slogan called Just Be Nice. JBN is posted everywhere. I think it's one of the better slogans in life to teach and pass on to our kids. In fact, I felt like I should incorporate some JBN in my life.
Does it seem like everytime you turn around someone is telling you about their sister-in-law just got diagnosed with MS. Or someone thinks they have MS and corners you with all their symptoms to see what you think. Does every 3rd person have MS now??? Or think they do???
As a peer for the National MS Society I actually get a lot of emails from people who think they have MS. I understand if you have scary ailments and the internet suggests MS. But please go see a Dr and get a firm diagnosis of what you have. Don't try and diagnose your self.
Who on earth would want to go through the stress and anxiety of NOT KNOWING what is wrong with them. I know testing can take a while and their are A LOT of diseases and problems out there.
Getting a firm MS diagnosis can give you the determination to start taking disease modifying meds and taking care of your self while moving forward.
With so many people asking me if I think they have MS or someone they know maybe has it I have really had to pull out my Just Be Nice card.
Does it seem like everytime you turn around someone is telling you about their sister-in-law just got diagnosed with MS. Or someone thinks they have MS and corners you with all their symptoms to see what you think. Does every 3rd person have MS now??? Or think they do???
As a peer for the National MS Society I actually get a lot of emails from people who think they have MS. I understand if you have scary ailments and the internet suggests MS. But please go see a Dr and get a firm diagnosis of what you have. Don't try and diagnose your self.
Who on earth would want to go through the stress and anxiety of NOT KNOWING what is wrong with them. I know testing can take a while and their are A LOT of diseases and problems out there.
Getting a firm MS diagnosis can give you the determination to start taking disease modifying meds and taking care of your self while moving forward.
With so many people asking me if I think they have MS or someone they know maybe has it I have really had to pull out my Just Be Nice card.
Wednesday, September 25, 2013
Fall. Love It or Leave It
Ahhh, Fall is in the air. Well, for us in the South that means the temps are starting to dip below 85. And a nippy 65 at night. Brrrrr Not a cool weather kinda Gal.
Fall to me signifies the season changing and for some of us with MS that is an apprehensive time of year. Weather and temp changes mess with my head.
The coolness makes numb areas hurt and the brightness outside is different and makes my vision squirrley. (Not a medical term to be sure)
And my biggest baddest MS flare-up was in the fall (and well into winter) so it makes me a little nervous. Psychological? Probably.
Fall to me signifies the season changing and for some of us with MS that is an apprehensive time of year. Weather and temp changes mess with my head.
The coolness makes numb areas hurt and the brightness outside is different and makes my vision squirrley. (Not a medical term to be sure)
And my biggest baddest MS flare-up was in the fall (and well into winter) so it makes me a little nervous. Psychological? Probably.
Tuesday, September 17, 2013
A Cold or a Zombie?
The Voodoo got me. Remember I was just talking about trying to stay germ/sick free?? Well, Friday I get the crud. You know, the crud. You don't know whether to call it a cold, sinus issues, flu etc. It's the "I feel crummy and need a personal nurse" crud.
Tissues surround me. My perfume of the week is Vicks Mentholatum rub.
Sleeping off and on all day and night. Freezing then sweating. Stuffed up nose which immediately starts running just to stuff up again. Laying down. Getting up then just laying down again. That's me.
I'm a horrible sick person. I'm miserable. And I'm sure that I feel worse than anyone else could ever. (kind of like a man...)
Add in some daytime no-drowsy that wear off after 2 hours and I'm pretty sure I resemble a zombie. A not showered, icky, hideous looking zombie.
And, (I'm whispering this) this had better not trigger a flare up. Shhhhhhhhh
Sunday, September 8, 2013
MS Voodoo
Do you tend to be cautious or superstitious about doing anything that seems similar to what your were doing when you had your last big "flare up"?
Case in point. I've been asking (nagging) my husband to go on a cruise. He finally told me the reason he keeps saying no. He said "don't you remember the last cruise?" Yeah, I remember having a pretty good time. At least on the ship. He just looks at me as if I have 3 heads. He said "we got off the ship and on the drive home you started feeling sick.Fever, chills, severe headache etc. Within a few days you had numbness in your face that traveled over the next few days down the entire left side of your body."
Oh yeah. I remember now. I tend to shut out that chunk of time...
That was October 2008. By December 2008 I was diagnosed with MS.
It scared me and totally terrified my husband. We were living in a new town. Had 3 boys at new schools. No friends or family around.
So I guess I'm banned from cruises the rest of my life. But, then I started thinking of all the small things I do or avoid because I'm scared it will stir up the MS pot.
I'm worried about germs. I know that a little bug or virus can get an exacerbation started. I'm constantly washing my hands and using hand gel. I work with kids so I'm extremely paranoid. And I won't babysit my niece's and nephews if their sick.
If I get too tired and shaky I panic a little. If I can I lay down immediately until it gets better.
Ever since that big bad attack I have anxiety attacks. Big ones, little ones you name it. I have spent 5 years trying to make rhyme or reason of them. They come an go with such randomness their hard to keep up with. I guess I'm stuck with that part forever. Most of the time they hit me when I'm feeling no anxiety what so ever. But I work hard to keep stress to a minimum. Hopefully that helps. It's like some wires are messed up in my brain or something. Um, yup there actually are.
Cold weather does a bad number on my body. I know heat is usually the culprit for MS'rs but my nemesis is the cold. It makes my body hurt so bad that I think my bones are going to break. And the winter glare messes with my vision. I spent quite a bit of time in and out of hospitals in the winter time while the Dr's tried to get my MS under control. So I try to stay out of the cold.
So I catch myself from staying away from the "bad things" that in my warped little lesion filled head might make me "MS sick".
Is that like OCD??? Hopefully I don't start counting the times I turn a door knob to ward of MS...............
Wednesday, September 4, 2013
Tecfidera Side Effects
I've been on Tecfidera a few months now and I can honestly say the side effects are by far better than Copaxone was. Of course, Tecfidera being oral is the number one plus. No more shots, injection site lumps, pain, burning etc...
My only side effects have been flushing. Where my face gets red and hot and feels like a sunburn. And itching. Only on my hands and forearms. And they always come at the same time. Early in the morning. But only a few times a week. No Biggie. I can handle this. Now, cross my fingers it works!!
My only side effects have been flushing. Where my face gets red and hot and feels like a sunburn. And itching. Only on my hands and forearms. And they always come at the same time. Early in the morning. But only a few times a week. No Biggie. I can handle this. Now, cross my fingers it works!!
Saturday, August 31, 2013
Read a Book Why Don't Ya
After my last few rants I feel cleansed. That's the beauty of blogging for me. Let it all out and I feel like I just took a yoga class and got a massage. Beats therapy or counseling any day. (trust me)
I have felt great these last few days. No drugged feeling fatigue Yay! Even with the humidity worse than Florida and very little sunshine.
It could be the combination of my rants as well as I've read several good books this week.
Believe it or not even though I'm from the south I wear shoes (well, not if I don't have to.) and I read. A lot. I'm a voracious reader. I just wanted to say voracious. (snicker) I love that word and don't get to ease it into conversation very often.
Reading takes me away. Minimizes my issues whether they are physical or mental.
There is nothing more satisfying than getting swept up in a book and immersing yourself with the characters.
Great way to take you mind off MS stuff.
Thursday, August 29, 2013
I'm Fine. Thanks For Asking
I am to a point in my MS life that when certain people ask how I'm feeling I say with a big southern smile "Fine. Thanks for asking!"
I have several family(ish) members who always ask "How are you feeling"? "The new medicine working"? or "You look good. That new medicine must be working".
Now this isn't intended for the kind people who genuinely care how I'm feeling and ask me that. Some of them are scared and like to be reassured.
This is for people close to me who a) Should know what MS is by now and know what it does or b) Who don't care or don't know what their talking about and should not even ask.
Now I or my husband have told these close to us people how MS works. After a number of years we get tired of wasting our breath and have just stopped.
We try to break it down into a simple explanation for those who don't get it, don't look it up, or are just plain stupid and don't give a shit. There I said it.
And we only give it to people who ask. Never will I be one of those who let's their ailments take over all conversations or force feed my disease on others.
And if you don't truly want to "get it" don't ask. Seriously. It won't hurt my feelings. To be honest, I don't want to talk about it with you.
I'm so glad you think I "look good" or "don't look sick". I work very hard to look that way. And I mean very hard.
You don't realize that I've been in a brain fog and cognitive sludge for the past 4 days and am having trouble remembering what your name is. You don't realize part of my face and leg are numb and I'm hoping it doesn't go any farther as I'm chatting with you. You don't realize the anxiety attack that comes from nowhere and drops you to your knees. You don't realize that I have had severe fatigue (not just need a nap tired. Your not EVEN CLOSE) for the last 48 hours and have been laying down to muster up enough strength to make it to whatever event is most important to me. You don't know the worry that my husband and myself have after seeing more lesions show up on my last MRI. And that's ok.
I have a handle on it and am adapting. It's all good.
I recently had someone close who asked "Is the new medicine (Tecfidera) working yet"? "Is it making you feel better"? I replied "It's hard to say. It doesn't really make you feel better. It hopefully will make my future flare ups not as long or severe and further apart". To which she replied "same thing."
Um, no it's not.
So, It's just easier to say "I'm Fine. Thanks for asking" to those folks. Or punch them in the mouth. Which is what I would like to do some days.
I can just blame it on my MS meds "not working".................
Saturday, August 24, 2013
Migraine Hell and Teenage Drivers
So my crummy day yesterday ended with me not getting a call back from neuro or GP for what I now know is a migraine. My first and hopefully last one.
With feeling like my head would explode and Scottie being out of town I went to extreme measures. I had my 15 year old son( very new driver. And I mean very new) drive me the mile to the closest Doc In A Box. At that point I didn't care if my cat drove me.
Five minute wait time a shot in my butt and two prescriptions and I was out the door. I had relief within an hour.
So, I know you have your circle of supposed MS caregivers. But in cases like this I recommend whatever can get you relief the quickest is you best route. Even if it means having your teenager ignore stop signs to get you help.......
My awesome son stepping up to help his Mom!! And no, I won't let him drive again for a while!!
With feeling like my head would explode and Scottie being out of town I went to extreme measures. I had my 15 year old son( very new driver. And I mean very new) drive me the mile to the closest Doc In A Box. At that point I didn't care if my cat drove me.
Five minute wait time a shot in my butt and two prescriptions and I was out the door. I had relief within an hour.
So, I know you have your circle of supposed MS caregivers. But in cases like this I recommend whatever can get you relief the quickest is you best route. Even if it means having your teenager ignore stop signs to get you help.......
My awesome son stepping up to help his Mom!! And no, I won't let him drive again for a while!!
Friday, August 23, 2013
Not a Rainbow and Unicorn MS Kind of Day
I try not to be an MS whiner. You know, everyone has an MS friend or acquaintance whose sole purpose in life is to constantly wear that "I'm hanging in there" martyr look on their face. Sorry but they do. So much you turn around when you see them because you just don't want to hear about it. And I have MS! What a bad person I am....
I try to keep all my symptoms inside. Don't want to talk about it. If you ask I'll say fine. I hate going into boring detail about my problems. .
But, today I am going to whisper in your ear what is bothering me.
Yesterday that pain in my neck started. Literally. I have a burning pain that starts in my neck and shoots over to about mid shoulder blade. I have had this since it came about at my last bad flare up in 2008. It feels like someone is stabbing me. It burns and if left alone without help will creep up my neck into my face and back down through my left arm to the tip of my thumb. It is a burning ice pick stabbing kind of pain. My neuro says it's a residual thing from the bad flare. As in, it probably won't go away. Super. So, a panic ensues a little that what if an exacerbation is coming on and then I end up with a fireball of anxiety.
Throw a headache from yesterday that turned in to a migraine that has lasted well into today and here I am.
Of course it's a Friday. What concerned Neurologist with a bitch demon for a nurse (who thinks every patient is trying to score a round of steroids.Seriously??) or a primary care Dr will ever call you back on a Friday???
Not in my neck of the woods they don't. I'll be lucky to get a call back late Tues afternoon asking 'what problem are you having again"?
So, my choices are taking that ineffective Naproxen in which in my opinion is like taking an expensive tic tac. Going to yoga to stretch out the muscle that's causing so much pain (Did that yesterday and the day before) vomiting from the Migraine (did that already too) Does anyone yet sense my dissatisfaction with my circle of caregivers?? Or go around the corner to the Doc in a Box and explain while although I have MS my caregivers who are no where to be found and if you could just give me some relief without thinking I'm a meth head or druggie I would greatly appreciate it.
So there. I am not always sunshine and unicorns about my MS.
I try to keep all my symptoms inside. Don't want to talk about it. If you ask I'll say fine. I hate going into boring detail about my problems. .
But, today I am going to whisper in your ear what is bothering me.
Yesterday that pain in my neck started. Literally. I have a burning pain that starts in my neck and shoots over to about mid shoulder blade. I have had this since it came about at my last bad flare up in 2008. It feels like someone is stabbing me. It burns and if left alone without help will creep up my neck into my face and back down through my left arm to the tip of my thumb. It is a burning ice pick stabbing kind of pain. My neuro says it's a residual thing from the bad flare. As in, it probably won't go away. Super. So, a panic ensues a little that what if an exacerbation is coming on and then I end up with a fireball of anxiety.
Throw a headache from yesterday that turned in to a migraine that has lasted well into today and here I am.
Of course it's a Friday. What concerned Neurologist with a bitch demon for a nurse (who thinks every patient is trying to score a round of steroids.Seriously??) or a primary care Dr will ever call you back on a Friday???
Not in my neck of the woods they don't. I'll be lucky to get a call back late Tues afternoon asking 'what problem are you having again"?
So, my choices are taking that ineffective Naproxen in which in my opinion is like taking an expensive tic tac. Going to yoga to stretch out the muscle that's causing so much pain (Did that yesterday and the day before) vomiting from the Migraine (did that already too) Does anyone yet sense my dissatisfaction with my circle of caregivers?? Or go around the corner to the Doc in a Box and explain while although I have MS my caregivers who are no where to be found and if you could just give me some relief without thinking I'm a meth head or druggie I would greatly appreciate it.
So there. I am not always sunshine and unicorns about my MS.
Tuesday, August 20, 2013
My Numb Leg On Vacation
A couple of weeks ago I was in Florida. I know all you MS'ers are gasping. "Florida?? In the summer??? With MS??"
Yes. I love Florida and I love the heat. Of course my MS doesn't but I had the attitude of who cares? F.U. MS. I'm going to have some fun.
Fun I did. I swam in a cool (festive and temperature wise) pool every day. That really seemed to help. But, when I laid
beside the pool for a while I could feel my toes going numb then on up my leg to my hip. It was creepy to feel it. Usually I'm busy and don't notice it until it's already numb. But, just laying there and feeling it work it's way up was so weird.
For some reason I didn't worry. I just let it do it's thing every day. Then I went home and it was better.
I'm not saying to go lay in the heat and see what happens. I'm just sharing what happened to me and I didn't let it get to me. That's all.
Think I'll start taking pictures of just my numb leg on vacations. Kind of like that traveling gnome guy.....
Saturday, August 17, 2013
Tecfidera at Two Months
I have been so bad in the blogging department lately huh?!!
Well, it's been roughly 2 months since I started on Tecfidera (BG-12) and I can honestly say it's been great. Great in the sense that it's just a pill. Great in the sense that the side effects have been minimal at best. A little flushing or itching is all. And that has been rare so far.
I guess that's why I've been lax in the blogging department. I'm finally back on an MS med which gives peace of mind if not physical relief. (Only the next MRI will be able to tell that) Plus, without the shots and side effects I feel like a normal me again. It (MS) just isn't on my mind 24/7 like before. I mean, I still have days of numbness, cognitive issues, anxiety, muscle spasms among other things. But, they are becoming second nature and I don't stress nearly as much when I have them as they used to.
Summer has been full of baseball, pool time, reading etc. Other than the humidity that can lay me flat it has been exactly that. Another summer. Another fun filled time with my family.
Get in tune with your body. So long as a flare-up (exacerbation) is not coming on then try to ignore those pesky other symptoms that like to annoy you and try to ruin your day. Don't let them. Live your life.
Wednesday, June 12, 2013
Sometimes Life Gets In The Way
So sorry for the long hiatus. But, sometimes life gets in the way. I won't bore you with the details. Mom, wife, jobs, etc. You do the math.
I received my Tecfidera medicine today via Fed Ex. It is crazy but it has been 1 year and 1 month exactly since I had to quit Copaxone due to a bad reaction. Don't ask. Bad. I am nervous and excited at the same time. Nervous that Tecfidera will work and the side effects won't be too bad. Excited that I will now have the peace of mind being on an MS disease modifying med. That's the way I am. If I'm taking something that supposedly keeps my MS symptoms to a minimum and flare ups at bay then I can put MS in the back seat and get on with my life. I think lately that is what has happened with me. MS has been back up front in the driver seat. Not a fan. Anyway, there is an amazing MS blogger that gives such great insight and detail to all things MS.
Please read his blog and I hope it makes you feel good like it does me!!
Wheelchair Kamikaze: Tecfidera (BG 12) And PML: Over the last month or so, there’s been a rising crescendo of concern among MS patients about the possible link between the newly approve...
Thursday, March 28, 2013
BG-12 Approval
Great news today!!!! BG-12 was finally FDA approved yesterday!! Not sure on when it will be available but ironically I have Dr. appt with Neuro on Monday and was dreading it. I knew he was going to make me start taking my second choice of drug therapy if BG-12 wasn't out yet.
So, for all of you fellow MS'er who have been waiting with me for quite a while on the new disease modifying therapy BG-12 it's here!!
So, for all of you fellow MS'er who have been waiting with me for quite a while on the new disease modifying therapy BG-12 it's here!!
Saturday, March 16, 2013
What If?
I hope everyone enjoyed their MS Awareness Week!!! My guys are so sweet they wore MS T-shirts and orange ribbons to school and work this week.
Getting information on MS "out there" is one of the reasons that we have made such progress in the last 10 years on research and disease modifying drugs for Multiple Sclerosis.
I usually take this time and concentrate on updating my MS blogs, profiles, and getting together either online or in person with fellow MS patients. I am an advocate and MS Peer with the National MS Society. I also love our local MS Chapters Walk and I work on that.
But, like some of you as much as I love my work with supporting MS I get a little down this time of year. I feel more exposed with my personal diagnosis with MS and feel uncomfortable with the attention. There are a lot of people in my life that have no idea that I have MS. It's not that I'm withholding that information it's just that it doesn't come up.
Then there is the added stress of worrying more this time of year with "I wonder how I will be next year?" or "How much longer til my next flare up?", "Will I need a wheelchair in my lifetime?" Especially when I am in contact with fellow patients who are already experiencing these things.
So, I kind of have to kick myself and get over it. It's normal to feel this way and with all the kick ass new meds on the horizon hopefully these questions for all of us will be no or never.
Have a fabulous week!!
Tuesday, March 12, 2013
MS Awareness Week
It's MS Awareness Month and this week is MS Awareness Week. My guys wear orange ribbons to school and work this week and amazingly not everyone knows what the orange ribbon is for. And that's why they wear them. To educate people who don't know.
Our local MS chapter is having it's annual MS Walk in April. It's a wonderful event and gets quite a few people out to support MS.
If you can, join your local chapter in this wonderful fund raiser. You can walk for yourself or walk with a team for someone. It's great fun and a great time to get together.
Friday, March 8, 2013
Vanderbilt Multiple Sclerosis Center
Was thrilled to see this article on National MS Society web page!!!
Vanderbilt receives designation as Center for Comprehensive MS Care
2
Feb 28, 2013
Congratulations Vanderbilt Multiple Sclerosis Center
Congratulations to Dr. Sriram and staff at the Vanderbilt Multiple Sclerosis Center for receiving designation as a Center for Comprehensive MS Care by the National MS Society.
Centers for Comprehensive Care are led by clinicians with demonstrated knowledge and experience in treating MS and offer and coordinate a full array of medical, mental health, and rehab services and have a strong collaborative relationship with the National MS Society.
Thursday, February 21, 2013
Depression and MS
I have read that over 50% of Multiple Sclerosis patients suffer from varying degrees of depression. Another article I read suggested that percentage was more along the lines of 80-90%. That's quite a bit and shouldn't be ignored.
If you have MS and notice that you interests in things has diminished it is time to assess your mental health. Mental health along with your physical health cannot be put to the side. Sometimes they even help each other. Losing interest in things you normally enjoy is usually a sign that you may be depressed. Along with aches, pains, not wanting to get out and sleeping more.
Sometimes someone close to you may notice the signs before you do. If so, your physician or neurologist should be contacted immediately. Depression can be helped but can get much worse if left alone.
After I was positively diagnosed with MS I went into a tailspin of depression along with denial for about a year. Luckily, my Dr caught on to what I was suffering with and put me on medication. It was rather trial and error but I eventually got the right medication and dosage to help me. And boy, did it help!! I still get season depression this time of year so I adjust my meds accordingly.
Nobody should have to suffer from depression. And, if you have had it you know how debilitating it can be.
MS has enough physical and mental challenges as it is. Being depressed can be helped and when it is you will find the strength mentally and physically to handle everything else.
I hope everyone is well and relapse free this week!!
Saturday, February 9, 2013
Winter Blues
Ugh! This winter weather has me singing the blues!! But, this week temperatures hit the 60's so I am semi-good with that.
I have been watching the news on the poor folks in New England. Gah. I can't even imagine being stranded with that much snow. But, some people love it. Kudos to them.
I wandered around my yard with the sun on my face and mentally planned what I was doing with my yard this year. I can start dragging all my flowers and plants out April 1st and start planting my garden.(only 49 days!)
Hobbies are a great way to keep you occupied and focused on something other than your health. I can't even begin to list the hobbies that I have heard from people who have MS. There are some awesome talented people out there!!!
I hope everyone is well and looking forward to spring as much as me. Hopefully no bad flare-ups for anyone! I've had some fatigue but that's about it. And I can certainly handle that.
Monday, January 28, 2013
Holistic Healing
So my fab primary care physician is big on adding some natural elements to my MS medicine cabinet. What the hay? Oh, well if he wants me to and it doesn't hurt anything I said why not. Here were some of his suggestions.
The Swank Diet Low fat, no red meat etc. (a little boring for me)
2 Tablespoons olive oil a day. Hopefully I can have it on Italian bread!
lecithin-not sure what this is
tumeric- again, I need to look this one up.
Anyway, I do a little research and check it out.
My main question is how do we know any of this is working???? HA
If anyone has any holistic approaches they want to add for MS let me know. It's always fun to hear of new things! lol
Wednesday, January 23, 2013
Brrrrr
Brrrrrrr.. I don't know about your geographical area but it is cold here!! I am definitely not a winter lover. Some MS'ers do much better in the cold than the heat but it is rather reversed for me. Heat makes me feel sooooo much better. I love hot baths, warm heated water to swim etc. Cold makes me physically ache. Ugh.
If you are enjoying your winter I salute you with a big cup of hot cocoa. If you are like me and counting down the days til April 1st. (No frost here after that date) Which by the way is 67 and counting. Hang in there.
If you are enjoying your winter I salute you with a big cup of hot cocoa. If you are like me and counting down the days til April 1st. (No frost here after that date) Which by the way is 67 and counting. Hang in there.
Tuesday, January 15, 2013
Primary Care Physician
Another rainy day! But , that's ok. It gave me a reason to go to my 3 month check-up in my pink rain boots! If it's going to rain it's only fair that I'm able to splash freely in puddles!
So, I hope everyone is having a relapse free new year. And, I certainly hope everyone is staying well and keeping germ free. As I'm sure most of you MS'ers know what havoc a virus can wreak on our bodies and possibly set off an exacerbation. With this particular bad flu ridden season it's best to go the extra mile in staying healthy.
Staying on top of your Dr appts. regularly is a good way to keep on top of our health. Sometimes a Dr catches something that we have ignored or just didn't see the signs.
I am glad to report my 3 month check-up was good. Please note your primary care physician can be equally important as your neurologist. They will keep track of minor illnesses and keep a good rapport with your neurologist. If your primary care physician is not as concerned with your MS as you think they should be please talk with them or possibly seek out another Dr.
I was very lucky to find a Dr. who's wife has MS and even goes to the same Neurologist so he is all over my MS!!!
Ok, enough lecturing!! Don't forget, I am not a Doctor or therapist. I am just a patient with MS who shares her thoughts, opinions and experiences.
Monday, January 14, 2013
My Lust of Rainy Days
Another rainy day! Bonus! My house is clean. The boys are back in school. And I took a fat nap this afternoon. Could it get any better? I think not.
I hope everyone has a lovely day rainy or not. :)
http://www.youtube.com/watch?v=esEdC0c3YI4
Tuesday, January 8, 2013
The Mermaid In Me
So much for me posting more frequently huh??!!! LOL I have an honest "excuse". My oldest son Cory is coming home today for 3 weeks!! He is in the Navy and we have not seen him (other than Skype) for over a year and a half. :( So, between getting all my Christmas stuff packed back up, getting the house guest ready and trying to keep my MS calm ( that makes sense doesn't it?)I have been a blogger slacker!
To all of you that know me or read this you know I am a Yoga nut. It calms the mind as well as keeping those muscles warm and stretched. Well, this week is the last week of vacation for my teenager boys. We got a wild hair and starting swimming at the YMCA every afternoon. We love love love the water but have not really thought about swimming in January! I had no idea they would like it so much and even asked every day if we are going. Talk about soothing and relaxing!!! The water was 87 degrees. Yummy! We have stayed no less than 2 hours each day. My muscles and mind felt great! Plus, my boys acted like toddlers and we laughed and laughed......Perfect combination!
So, if you have the chance go do a little swimming at your local Y or gym. Heated water makes those muscles fluid and I don't know about you but pretending I'm a mermaid makes me feel fun and carefree. (Mmmmmm, carefree....doesn't that sound lovely!?)
Tuesday, January 1, 2013
Happy New Year
Happy New Year!! I personally hope this year is as wonderful and kind as 2012 was to me. And if 2012 wasn't your year then I wish happy things for you this year!!
I'm sorry for not posting much lately. I've been feeling good MS wise lately and I'm like a lot of you in the If I feel good I don't want to talk about MS mode. Make sense?
So, I'm not a big New Year's Resolution kind of gal but I've decided to post on my MS site more frequently regardless on how I feel. We can chat about MS, the weather, or whatever. I am always hear to vent or just listen to others.
I'm sorry for not posting much lately. I've been feeling good MS wise lately and I'm like a lot of you in the If I feel good I don't want to talk about MS mode. Make sense?
So, I'm not a big New Year's Resolution kind of gal but I've decided to post on my MS site more frequently regardless on how I feel. We can chat about MS, the weather, or whatever. I am always hear to vent or just listen to others.
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