Sunday, January 28, 2018

Cold/ Flu

Wow! I seriously just lost a week of my life. While I had my cell phone and could have blogged about the horrible cold turn flu, having the strength to do anything was a stretch. Thankfully my side of the bed is right next to the bathroom. I actually would remind myself daily not to smell! I mean I seriously felt like a parent of a newborn. Thank goodness for an awesome husband that helped keep track of days/time/ and meals! Just crazy!
I am finally starting to feel sorta better. I can breathe and my chest doesn't feel like a brick on it.
Good to feel alive!

Friday, January 19, 2018

Sinuses from hell

I often wonder what issue is connected to what. I mean I am very aware of my body and know when my legs are weak. I also know when the heat is getting to me. Those are both things that I can point to and say without a doubt, it's MS related.
But my nose... It runs like crazy! Or it will get stuffed up and I am miserable. Either way, rarely a day goes by that sinus "something" isn't a factor in my life. I seriously don't remember a day when I didn't have to blow my nose multiple times. And yes, I take allergy medicine and about a billion other things to avoid the feeling. Trust me it is not a great life!
It is seriously crazy. And I can't help but wonder is my MS part of my sinus hell?

Tuesday, January 16, 2018


In 2004 my life came crashing down. The words "multiple sclerosis" back then still were such a huge long term unknown in the sense of treatment options and long term care. I saw myself with little to no options available for life...
For about 5 minutes!
It really never dawned on me that MS would ruin my life, just change it. I knew people that had MS and their lives had been... Forever changed. I guess it's easy to say I have always been determined not to be them.
Do I have a secret? Some super medical treatment or medical therapy- Heck no!
I have listened to my Doctors over the years and followed their advice (within reason). I have stuck to taking meds when needed as needed.
And sure, my life isn't roses. I mean its 12:40 am and I am up typing about my MS & reading old blogs to see how things have changed or when things have bothered me the most (to write about them)... But truth is... I am pretty darn lucky!
I'll take it! Leg cramp and sleepy issues and all!

Sunday, May 3, 2015

Head fog

After only getting less than 3 hours of sleep last night (this morning) I ended up having a pretty functional day. Accompanying my husband to the grocery store and got my lunches packed for the week. I started dinner in the slow cooker and then helped my daughter with some much needed guidance.
Then it was time to test my shoulder. Only one way to see how well my workouts have helped... I figured some bonding with my daughter over some archery way the best way to do both!
Problem with full days... Fatigue creeps in quickly and head fog can be painfully real.
It becomes debilitating to the point of just wanting to chill. Doesn't do well for a social life. But laying in a comfy bed, watching tv, and catching up on the news (or newsfeeds) is just what the Dr ordered!
Snuggling in shifts with everyone who stops by (kids & hubby) is an added bonus. Of coarse having a dog that doesn't want to leave your side is even sweeter.
Yep, I'm hoping I get a full nights rest. Cause tomorrow I've got a full day. I don't have time for head fog and I certainly don't have time for MS.
I'm Made Strong...

Friday, January 2, 2015

Gileyna roller coaster

The last couple months have been quite a ride. Over the last year, my Doctor has been monitoring my white blood cell count has a precaution to taking Gilenya. I have been taking it since 2008 during the FDA study and get my blood work every 3 months. This past year however, was when it really took a turn. The results has continued to fall lower and lower. Each time he would warn if they fell lower we would have to act... I would frown and hope for better results. I even researched online different ways to increase my white blood cell count, but it really didn't seem to matter. Every test the results seemed to get worse til the November test came through. All my numbers had been too low too long. And while some people on some forums argued that they could have gone lower (based on their experiences) my Doctor called it halts. He pulled me off my medication for a month and told me at the time that I might have to change medication and go to an injectable. I literally went to my car and cried.  I stopped taking my medication and my weight skyrocketed out of control over the past month. I gained 15 pounds! Beyond not cool! Yet I was eating healthy!!! I was still very fatigued but at the end of the month my white blood cell count had improved so much I didn't have to go on the injectable I could return to Gileyna. 

Starting taking it again.... Oh the fun! As my body is adjusting I bucking a nasty cold. It's basically a run of the mill chest cold. But the difference is I already have a decease that leaves me with a compromised immune system then add to it my medication, the perfect storm. Oh and it's flu season and I can't have a flu shot.... Ah, cough medicine and rest... Lots of rest.
Hoping my 2015 is a year of good health and happiness, but right now I am not off to the best start.

Friday, October 3, 2014

Sick & MS Sick... Not Ebola sick

I think we can all agree there are about a million levels of sick. Anyone who has kids or went to school can testify about being "sick". Then there's those really awesome days when you call your boss (so I've heard) because you are super, ah, sick, cough, hack, cough...
Then there's sick. There's please just let me die sick. There's- I think I'm dead sick. And my favorite- please don't let it get any worse than this- sick... (Right before it does).... 

Oh, let's for grins and giggles add MS to the mix and have Dr's stare at medical charts for several minutes almost like a crystal ball hoping for a miracle trying to figure out what to do next. To start, no one knows how you have the original decease to start with, so your MS treatments have really been trail and error. But now, you have issues... Well, you are on a boatload of medicine (that's about as medical as I'm going to get) so shouldn't one or more of those fine medications help? No? Well, what can you take that won't interact with what you are on while at the same time provide you with relief? Oh,my oh weren't expecting the Dr to do the heavy lifting were you? Surely by now you're an expert in drugology or whatever "ology" it is that keeps you out of the morgue and away from a toxicology report... I mean doesn't WebMD supply you with everything you need to know? 
If you're like me, you love the fact that most searches on there point to cancer, death, and a trip to the ER. They really should call it WebDeath or WebMDcashcow. Cause someone is making a ton of money with all the hypochondriacs that now have Ebola. I can't imagine working in an ER... You all deserve another raise.
My last white blood cell test (oh yeah total badge of honor here) was 2.5... Am I going around licking doorknobs? Hmmm, maybe I should. But no, washing hands, keeping clean, yes! Go figure.

Last week and going into this week, I became ill, it wasn't an "MS attack" thank Goodness! But I was seriously ill. I stayed in bed. I rested. Drank fluids. Took all the different medications (except for the one that made me feel high and dizzy). Did all the things the Dr said a person with an already crappie immune system should do... Did I flood the ER? No! Cause to be honest, there's sick.... Then there's MS sick! 

Living life means toughing it out sometimes... Weather the storm, the rainbow is up ahead...

Monday, August 25, 2014

A tiny nap wouldn't be so bad...

Been a total battle lately. Health-wise I am what you would consider "a picture of good health". My MS is hanging on great! In "MS" circle talk, anyway.... Do we have a circle? Communities, Yes! But actual an circle? I'll continue...
 I have been trying to exercise every day. I set an alarm and say I'll exercise then! Only to hit snooze and tell myself it's a better idea to do it after work, less likely to injure myself! The work day ends and driving myself home seems to be the actual accomplishment. I actually feel relieved I made it into the driveway without adding an insurance claim to the route. Not because I'm a bad driver (reserve all comments- not that I really get any in the blog world- wonder why that is?) Anyway... I make it, and proceed to the house! With the Florida heat it has been tough this year. Seeking A/C shelter and rest is about the quickest move I'm making. AND my shoulder has been this constant source of pain since November but really kicked it into high gear in January. I mean really, are you suppose to be in pain just sleeping? Totally wrong!!! So I have spent much of my time going back and forth to Dr.s and physical therapy trying to get some kind of relief. My favorite statement... " well, you are already taking... (a medication FOR treating [name something associated with my MS] and that's a pretty high dose" Really? No kidding! I take that EVERY DAY because otherwise I wouldn't walked in here. I have taken it in climbing steps now since I was dx in 2004 [10 years mathematicians!]. Do you Mr. Medical genius know what happens to a person after several years of taking something? Yep, that's right! It doesn't work! Heck I took something that straight had me looking at throwing myself straight down a flight of stairs. I totally see how Robin Williams "happened". Very sad! So yeah, today, right now, this very minute, when asked on a form to describe my "health", I'm good. Ask me this afternoon, when my drugs have worn off and I have to drive home, and my daughter wants to do something "sports" related, and my husband thinks dinner should be on the table cause I managed to get home first, and my son needs my time for school (its open house after all), and the dogs are upset cause I am ignoring them, and the iguanas & bearded dragons are pacing because I walked into the room but didn't give the "proper" love the wanted (and they probably need fed too)... sure... I'm good. By neurology measures. No new lesions. But I am exhausted! So what measures should we go by when people ask?

We live in a world where its "weak" to be anything but "ok" or "good". And I am, health-wise. I am very grateful. I just think, there's nothing wrong with wanting a nap!