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...

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!

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".

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!

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 http://www.phoenix.edu/forward/community/2014/03/chronic-ms-couldnt-stop-alums-graduation-walk.html?inticid=phxfwd-weekly-recap:4:email:alums-graduation-walk . 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!

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!

The month is gone?

It's December 24... I noticed that I last wrote like well beyond a month and a 5k ago. Yeah, a 5k! I ran/walked a 5k because I'm that girl. The girl who "forgets" she has limits. The girl who just wakes up and decides she's going on a hike- yeah- that girl. But not without my ice vest during, and after. And it did come in handy! But that was then...

This month has been hard. A total emotional roller coaster ride filled with ups and downs. I went to my Neuro and my vitals were great (including my weight- for a change), only to get my blood work back a few days later. My white blood cells were at the lowest he'd allow for me to be among the "living" as in not under some form of serious treatment... Yikes! I totally didn't even like the sound of that. So I did what I normally do, I ignored him. He told me he wanted blood work every month for the next 6 months (he's blaming my medication- it very well could be), and if no improvement, well, we'll drop back and punt. I don't see him as much of a kicker and I really see this as more of a Charlie Brown episode, so since I LOVE my computer anyone who knows me know what I did next. Yep... lots of research to find ways to safely raise my white blood cells. I wasn't about to "fail" any more tests. 

I do need to get better at keeping myself informed (thus this blog) at what I'm up to. And amusing the rest of the world in the process

It's hard to believe I have really been so bad at keeping track, but then again, we are talking about an issue that involves my brain, so not a complete shocker. Note to self... Blog better. Ha! Well, I hope everyone has a wonderful holiday! You deserve it.
And just remember- you aren't alone!

Cause behind the scenes... MS affects us all!