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
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...

Tuesday, June 17, 2014

Knowing better

Headed out to an event yesterday I grabbed my water bottle, walked over to where I fill it up and made sure to put lots of ice and water in it. I then made my way. When I arrived, I climbed out of my car to a parking attendant who clearly was a volunteer that didn't volunteer. In the midst of all the "fun" of parking, my water bottle stayed in the car. (Strike one)

Walking over the sea of people I saw many familiar faces, I knew it would be a great event just based on the cause. We were celebrating the 300th habitat house for our area, what's not to celebrate? But with that comes speeches (strike two).

Standing there for over an hour, the heat really started to get to me. I fanned my self with the program as best I could. The moment I stopped I could feel my face, my cheeks literally burn up from the inside. A strange sensation, but it was clear, I was overheating. A woman was walking through the crowd handing out little tiny water bottles (I could drink 4 of those and still be thirty) and she missed me at every pass. (strike three- way OUT).

 The ceremony FINALLY came to a close and the new owner opened her door. I could feel the cool air on my face as though it was an answer from above. But as everyone was rushing inside for a quick refreshing feel, it quickly was going away. The doors were being opened all over the home, the cool air was leaving faster and faster. I found the cooler of little baby waters (as I like to call them) and wanted to dump them out and climb in with the ice (I probably should have). Instead, all lady like, I reach in and grabbed just one... (I'm up to bat again at this point) Strike ONE!

I politely talk to everyone but found that EVERYONE was making it too uncomfortable too quickly and found my way back out into the heat. But not for long... I made "the rounds" got out of there glad to see people I hadn't in a while.

Heading back to my car it was all I could do to climb into my now 40 billion degree car and head back to my office. With the A/C on high I was grateful it still works like the day I got my car. My trusty water bottle was right where I left it, just completely melted. I didn't take a sip (Strike two).

I got back to my office and sat there trying to cool off, I even wore my neck cooling thing (should have worn it there- that would have required thought I guess). But the heat just never really went away. It was one of those things where I just threw myself into work and never really made time to relax and allow my body to cool... ah can you say STRIKE THREE!

As I drove home, I could already feel it coming. I felt it coming even before I left the office. But it hit HARD as I crossed the street heading to my car. Like a truck hit me, my head just screamed- WE ARE DONE!

YOU ARE OUT! Driving home was beyond painful, it was all I could do to keep my car on the road. I spoke with my husband for a good portion of it, letting him know about dinner arrangements, my day, etc. I think it was my way of survival. It was something anyway. I got to the point where I just laid my head in my hand and drove with the other. Great traveling, I know... and I know I know better. I just wanted to get home.
My medication was at HOME... Yeah, I know... I know better about that too.
But I did get home, took it, laid down for a brief moment with an ice pack before we had to leave for dinner.

I did make it through dinner, and I was grateful I didn't have to miss out. Because that's the biggest part about MS I HATE! I don't ever want to "MISS OUT".

Yeah, I know better, but will I continue to push it.. yeah, I will... but that's just who I am...

Claire Wiseman, Times Staff Writer, Habitat for Humanity 300th home

Welcome home Harrell Family!

Monday, May 12, 2014

Life changes things aren't like they were before

Sometimes it's hard to remember what life was like "before". Before I had to worry about what I drank, or how much I drank. What I ate, or if I are enough of the "right foods". Harder still is remembering not having to wonder what my day looked like when getting dressed. What would I be facing, doing, running (not physically) across, what demands. When heat and cold meant jacket, no jacket... But then again, I've always been oddly affected by temperature. Middle of summer I would wear sweatshirts and shorts, and yet argue to wear the same outfit in the middle of winter. Growing up in Northeast Ohio, it wouldn't make sense. Yet, there I was comfortable with exposed legs and a bundled "top". Who knew!

I wish I had run more when I could. Today, I am lucky when I can "run" a few minutes before having to walk fast. Some would tell me I am lucky I'm walking and I'll look back at this blog as say I remember... But I remember rock climbing with ease, rappelling like I was some kind of expert (I never was- but my Mom always encouraged my wild behavior). Horseback riding (I know anyone can do that), playing volleyball and softball- that I miss a lot. 

Many say -well with age... To which I say- BS! There are plenty of people older than me doing much more. 

Maybe I have become complacent, maybe part of me felt the inevitable will come so I shouldn't have so much too loose and then will be brokenhearted that it's gone. That's stupid. But in a way, it does allow me to just get by. Get by with "function". And sometimes I feel that's what I've accomplished, function. 
I hear it again and again MS patients are different. We present different and our treatments vary all over the place. I get it, and I know. I don't ever try to compare myself. At the same time it's hard not to compare myself against myself- the "before" me.

I live in fear of being alone, I didn't use to. I live in fear of not being understood, I never had that problem. I live in fear of no longer being the one that makes the ones around me proud, but rather ashamed and embarrassed to be around me.

It's quite a lot of times, before, it never was. My kids are growing up, moving on, as they should. I just fear it will be too quite and I'll be left to remember the me I was "before".

Sunday, April 13, 2014

Body changes

Each time I go in to see my favorite neurologist the appointment goes pretty much the same (luckily). Patty, MY nurse since before I even was diagoised with MS (I saw them first for migraines), calls my name and asks me at this point in the game if I want to be weighed... Seriously. She'll look down, ask, I look at what I'm wearing and make a decision. If I do decide to jump on and the number came up way too high (my thoughts) she'd say "well, should we go with something a couple digits lower...." God I love her! So then we leave that area, head to the room and update the actual file... I mean it's been three- four months, I might have grown a horn in that amount of time. After we have established that I really am their boring patient, she goes and gets the grand wizard, aka my Doctor. I love messing with them! 
He comes in, mind you on a great day he weighs a buck ten and he's maybe 5'2". He was giving me a hard time at one appointment about the number of migraines and the amount of stress/work,etc. I laughed, looked straight at him and said with a perfectly straight face, "and I could still take you!" At which point he started laughing and said, " I'm glad you haven't lost your spunk, Let's go ahead and treat your migraine." Ah, yeah... Ya think! He does love me...
So now he goes through all,his questions and his normal (I call it DUI) neuro testing, has me walk, and then asks me if there is anything he's missed. This is always my favorite part, not because he asks, but because sometimes I remember things I want to talk about (hello I have a brain issue!) other times I completely forget and get to the car or worse get home and am totally annoyed I forgot. 
This last appointment, I had my list. I also had printed the article I was featured in and framed for both of them as a gift. I wrote personal "thank-yous" and sat ready for my appointment. 
As Patty took me back, I did climb on the scale.mi was super pleased with the work I have been doing, and Patty laughed as she captured the "awesome" progress. Dang, now I have to keep that up! She took me back, ask me for my updates, that's when I gave her the frame...
Appointment went well,questions got answered, MRI got ordered. I was very pleased when the results came back... 10 years and nothing new, nothing larger. 
There are days when I feel awesome. Like I could run miles. Then there are days when I wish they would just end. The sheer pain alone is beyond anything I could possibly explain, and then there's "food". Eating this makes me feel this way, eating that makes me feel that way... Tired... Oh please! That's just half the story. My whole body feels as though it can't move because it's so tired, I have to rest, it's all I can so, yet my mind is going 1000 miles a minute. So not right! So then what, I get rest, and then I feel great, and I want to RUN.... How on earth do you possibly explain that?
Yeah... My body, not always my friend!

Thursday, March 13, 2014

Completely honored

Facing MS has been something I have done head on. Well maybe that isn't entirely true. There have been times when I refused to accept anything is "wrong" with me, I still do to an extent. I know I have limitations, but I refuse to allow those to dictate who I am or what I am capable of. 

This week, as an alumni,  my journey was featured in an article for their magazine . My biggest take away is the honor of representing both my school and the MS community. 

I am here! I didn't crawl into bed and quit! Nope, I'm not done, I've got lots to do... The best is yet to come! Look out!

Friday, March 7, 2014

No Love for the Numbers

Okay... so I completely LOVE My MS treatment. BUT apparently my MS treatment doesn't exactly love me back. I have been taking Gilenya   since being in the Phase III study and then the FDA approval.
Many people ask me- side affects? To which I unknowingly reply- NOPE!

Then I head to my AWESOME (and I do mean that- just read any of my other blogs) Doctor. So in terms of MS and it's ugly head my treatment currently looks like this:

  • new lesions since original diagnosis... NONE
  • current lesion growth- one has actually gotten smaller (now this could have been from Copaxone use  since 2004 diagnosis) the other lesions have NOT grown.
  • Relapses- NONE.
Changes in Issues-  This is where the REAL information lands!

  • Leg spasms- 2004- I really did think I was going insane, but nope- it was just my MS telling me I was working too hard. Sleep was no help cause I'd lay there and want to get up... AH! so what? One of the first  drugs to enter my daily routine Baclofen  10 mg which was increased as needed along with the times of day (morning and night). Now- I'm at 20 mg tablets and I am allowed up to THREE tablets TWICE A DAY! Yeah... But it does help - on a side note- I did try Lyrica- for 6 months when there was a question as to if the Baclofen was just not helping (back around 2007). Let's just say those warnings at the end of the commercial are there for a reason- heed warnings, and don't do any headers off any bridges!
  • Fatigue- 2005- Started with Provigil 100 mg, (yeah ha!) moved to 200 mg- I know you all saw that one coming! Then thanks to the FDA saying HEY WAIT A MINUTE!!! 2010- Nuvigil- 250 mg (cheaper co-payment)- as in first one was $35 a month, the second is $15 a month!
  • White Blood Cells (WBC)- This is where the meat of this "post" lands. I would say I am healthy. Others may argue. I looked back at my actual "sick" days last year and was pretty impressed with myself! Not bad! Since I battle with migraines as well, MS, hasn't really slowed me down. BUT my blood-work and some other issues tell another story. 
My latest white blood cell count was 4. An improvement, but not good enough (for my Doctor who thrives on perfection). Since November I have ridden the WBC roller-coaster.  Nov- 3.5, Dec- 3.7, Jan 3.8, Feb-4. I really do study for that stupid test, but I'm not good at tests I can't cheat, even a little on. Bummer!

So what has been the result of a plummeted WBC you may ask? Well THANKFULLY (since I can't have the flu shot) I haven't gotten "sick". I haven't come down with any crazy illnesses. And as people were passing along all sorts of nastiness at my work-place (please stay home when you are sick), I managed to slide through. BUT not without other issues.

If you have been following me for any length of time, you'll know in 2009 I had a major "female" related surgery. Well, without going in to great details, I am GLAD at 37 I am not going into a "mid-life" menopause just yet... But with my extremely low WBC it has caused all sorts of havoc on my body's ability to just do the things that bodies do on their own.

Fortunately, I have great Doctors! So after a trip to my other Doctor and great discussion, she plotted a long-term course for long-term happiness. (I think I tip-toed through that as best as possible). But of course it did mean two new prescriptions added to my already great list!

When I'm asked "are you taking anything" by "outsiders" for routine tests or anything, I just laugh. "Why, yes, yes I am!" Half the medications they can't spell, and most of them they have no clue what they are or what they do. I love when they pull out the drug book to make sure they aren't about to kill me. Look, my Doctor (who by the way has my complete drug list too) ordered the test the way he (or sometimes she) wants it, so I'm pretty sure you aren't going to find anything that indicates "death".
I hand over a list, with all the details now, I stopped writing all of the information. I mean seriously... That's alot of stuff! And most of the time they don't look at it anyway. Sometimes I sneak silly things in just to see/test them. For instance... Baclofen 20mg 3 tabs 2x times, Topomax 100mg 1 tab 2 times, Hugs 2-3 3x times, Gileyna .5 mg 1 tab, Twix 2 bars 1- Daily, Nuvigil 250 mg- 1 tab, Girl Scout cookies- 1 row, sleeve, box- as needed, Vitamin D- 5000IU, Multi Vitamin- Daily, ProBiotic- Daily

You would be SHOCKED how many times they look over my "medications" and ask-
 "Is this the complete list?"
 -Ah, yep!
"okay, great. What brings you in today?"
-Well it certainly isn't the Hugs, Girl Scout cookies, or the Twix! And they will look at me like I have horns coming out of my head... Till I laugh and say... "never mind...."
So while I continue to fight the numbers- cause I really do enjoy having MS for the few minutes it takes me to take my medication (that's what I always tell myself), I really do need to get my WBC up so I can make Dr. K happy and get him off my back! He may be a little guy (I can still take him!), but he makes sure I feel the weight of his pressure to make sure I am okay (which is a good thing!).  Cause otherwise... who knows... I would just run wild!