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!

Saturday, August 23, 2014

Tired, hot- tired of being hot!

I love when people talk about "hot flashes". Flashes. As in a starting point and an ending point. 
For some the time lasts a lot longer than they would like, but seriously, the word end... Ah, my word is basically avoid.

Avoid getting hot. Meaning internally hot. Hormonaly I still have a little plumbing (not much) that should help with what most people associate "hot flashes" with. But with my MS, my "hot" issues come from a deeper underlining issue.

Not truly regulating temperature. Have you ever seen someone working out side for a few moments just dripping with sweat? Yeah, that's not me. I can run a 5k and look like I just stepped out of a meeting that didn't go my way- my face is red, that's it. All my "heat" just stays in my body. Creating a boil affect, often with a headache/miagrane as the grand finale. Fans, A/C, ice packs, and a dark room become my retreat. 

My son went to take care of the lawn this morning. He had asked about weekend plans, I went out to see how things were going... He was dripping wet... I went in and got him a drink. Went out to see if I could work on my flower bed, and 5 minutes later I was back inside. It was way too hot. My dogs rushed me... Time to lay down! Rest! Yep.. Rest!

Monday, August 18, 2014

Summer doesn't end... and that's okay, sometimes

When I moved to Florida from Ohio in March of 2001, I left a cold snap that had left a dusting of white stuff on the ground. My son was wearing a winter jacket, I wore a sweatshirt. Finding out in 2004, after a bout of optic neuritis I had MS "heat" was not going to be my friend, and cold might not be either, I had to laugh.

I left Ohio, and moved to Florida... Hmmm... I knew the cold didn't suit me. It literally hurt and each year that would go by seemed for some reason to get worst. Little did I know my brain was a ticking time bomb.

Now, with this new "heat" thing, part of me laughed, where did I go that didn't have A/C? Oh, yeah, the ball field. I was coaching boys baseball. And my husband was coaching girls softball. I am totally aware of the backwards irony, but it worked for us.  We lived at the field, and that part of my life never stopped. It just changed.

I had a 2 year old that thought that the field was her playground, so keeping her off became a more of a balancing act the first year. I think I promised more "stuff" that year than I had Erik's entire life. Liz was 2 I figured she wouldn't remember... little did I know that I would end up with a child that would keep up for any "MS" fog I ever had.

It's 10 years later and the ball field has never stopped being apart of our lives. And neither has summer.

August is where it normally starts getting cool in most of the country. Its going to be in the 90's today with a feels like temperature in 100's... That isn't cooler.

Liz tried-out with an elite softball team this past Saturday, in the heat of course, and I stayed hydrated. I've learned.

The years have taught me several things...
August happens 
Summer doesn't really end in Florida, it only shifts
...and that is okay...
Missing out on life is NEVER okay
Adjusting to the changes of my MS is necessary to being the very best ME
 and...
I am beyond blessed!

Thursday, July 17, 2014

He holds my hand and my heart

Working at a dental office, I was more stubborn than anything, and as the receptionist came in a third time announcing I had a phone call from my Dr.'s office, but this time putting emphasis on the fact that it was MY DOCTOR that was on the phone, I knew I had to take the call.

Annoyed, I looked at the patient we were working on (We were doing a root canal- and yes, it might have been 2004, but I can remember it like it was yesterday) and apologized (again). Leaving the room I went to our back office area.

I grabbed the phone and sort of abruptly gave the "HELLO!" as if to let him know he was now on "my time"... Sure, as if HIS time wasn't worth anything. He made a comment about me avoiding him, to which I responded I was busy, but then he quickly said he needed to see me today. I had a full schedule of patients and that just wouldn't work. Me and my priorities... He said he didn't want to review the results over the phone, and I let him know I wasn't available till Friday (it was Wednesday)... reminding him (in my head) he was still on "my time". Then he came out with it... "You have MS and we need to see you (and your husband) to talk about treatment options."

My husband... oh wow, how was I going to call him and tell him I was officially broken? That something actually was "broken" in my brain. We had been married less than 3 years, and now this, it just seemed so unfair. I knew what it meant, its a LONG TERM death sentence. It felt like right there through the phone I'd been handed a life sentence with no possibility for parole followed by the death penalty for added measure. There would be no escape. It just seemed so unfair!
I called him to let him know I was leaving work, picking him up, and we had to go to my Dr's. He simply said, "OK". I kept thinking- I don't think he gets it...

We arrived and were taking back right away. I love Nurse PattyJo! Dr. Khamisani came back and although he and I always joke around, this time we were a tad more serious. Well I tried to be anyway.

He reviewed my MRI, I was relieved I had a brain, and had the proof in film form. I asked if I could keep them. (I had to find humor somewhere). We sat there as he went through everything and what it all meant.
His words were just that... words.
What really meant the world was sitting right next to me was the greatest man in the world. And he held my hand. As I picked a drug "choice" (he even helped joke about that to make me smile) discussing how needles would become my life, he squeezed my hand and said I would be fine.

Several years later I was selected to participate in a drug study that would in turn help approve a FDA pill drug (and get me away from the needle)... yep... he was right... I'm doing just fine.

With his hand- we were wed, and with his hand I continue my battle with  MS. With his hand I sat by his side and have received my bachelors and masters. With his hand he holds my heart...