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!

No love for that pink bunny!

Remember all those energizer bunny commercials? "Nothing beats an energizer... they keep going, and going..." I've got a hammer that says otherwise! Too much?

This is about the time of day where one of two things happen- 1) my boss shows up with a "great idea" for a project that "won't take that long" (try a couple days or weeks) or 2) my head all but whips back till my neck realizes it's still attached to the rest of my body. While convenient on so many levels (I probably would leave it around the house), its not exactly the greatest sensation. "Forced" whiplash from a wreck is one thing, but telling people you have a "sore neck" because you fell asleep gets you no love.

Sleep takes on new meaning in the world of MS. The world of sleep will argue that there is such thing as too much and then too little. Well, when you add in MS- take all the "sleep studies" on the "correct number needed" and THROW that data right out the window! It's crap! There are days when I sleep 2-3 hours and I function like a champ! Other times- complete zombie! Then there are times when I get 16 hours of sleep (I am so not joking- my husband sees the need for my sleep and threatens the kids with death if they bother me). I awake from my hibernation as though I had just gone to bed. Other times I wake totally refreshed ready to roof the house, re-pave the driveway, and clean the house top to bottom...

People will say, in a whinny voice that is like nails on the chalk board, that I should try to go to bed at the same time and get up at the same time. Yep! I've done that... result- one day I wake up nice and refreshed, another (in a weeks time) I wake up as if I never went to bed...

Totally crazy!
The final result- this long ranting blog that probably makes no sense other than to other MS'ers, and maybe some young mothers that would love nothing more than to get one full night of sleep! (NyQuil does work!) The key is YOU take it, not the kids! Who knows how they are through the night, but hey two key lessons are learned! 1) You can sleep through the night 2) They will survive all night without seeing you and you might be a happier person to be around. - On a side note- don't get cheap diapers and for God's sake don't give your bundle of joy the largest meal of the day right before bedtime. You will learn what an artist you have in your home, at the same time you will learn your gag reflex potential. Love will be tested! Spare yourself! Or purchase a really good fire pit and pressure washer, and "carpet cleaner"... sheets sometimes can't be saved, it happens. And when you are washing those walls off- you'll thank me! Just remember- wash- then carpet cleaner... No one will ever know ;)

Maybe I do need a nap. If I were President- we wouldn't quit nap time in preschool or kindergarten. I think that's why we have all the issues in schools and the workplace- we got away from nap time. Our brains need a "time-out", we shouldn't fight it... After all we aren't an energizer bunny!

(http://ebooktest.wordpress.com/2009/10/13/touch-will-change-everything/)

To visit or not to visit... co-pays that is the question

For anyone following the latest and greatest news from around the globe in the United States, recently the health care system has been in an overhaul of sorts to cover more people and care for more conditions. Several Americans have fallen "between the cracks" and left uninsured or in some cases uninsurable. Starting excellent jobs that offer benefits (sounds great on paper) until that all to familiar fine print. Pre-existing conditions.

To visit a primary care doctor under my plan I pay $20, that price goes to $30 to see my Neurologist. Oddly enough, when I go to the office, they ask for $20, then I receive a bill for the other $10... I always argue with them and tell them it costs $30 and the tell me they "contacted my insurance..." whatever! Anyway, since I am suppose to see my Neurologist ever 6 months (and have a prescription that now requires it - thanks federal government for making me to be the bad person) it is now a minimum of $60 a year, and another $40 a year to see my primary (That doctor wants to see me twice a year as well).
Doctor fees- With insurance- $100 (not getting sick and going in extra)- GOD ONLY KNOWS the costs without!

Multiple sclerosis is not cheap. It not only is a decease that hides itself like a chameleon often causing Dr.s to all but throw darts trying to come up with a diagnosis from the start, but once discovered treatment takes on a whole new life. There isn't just one symptom. So there isn't just one magic pill.
Unlike diabetics who are treated with a insulin or a pill, or people with high blood pressure (although many would argue most of these people have both and are give a variety of combined medication to thwart their decease), MS has several different areas that are treated in many different ways.

MS Treatment- Currently there are so many options on the market. This isn't your Mama's MS anymore! We are truly the blessed generation and I am fully aware of that! Even since my diagnosis when my options were 1)flu for the weekend, 2) flu every few days, or 3) needle every day and spin the wheel with reactions. Believe it or not I did go with option 3 at the time! I'm not good with the flu! But before long pills were making their way through the FDA studies, and I myself found my way into one of the final phases. Now having been on Gilenya for a number of years, I really am grateful to all that research. But cost... whew! Gilenya-WITH insurance $50 (Gilenya Go does offer their program, but can be tricky because of insurance company "reduced payment rules")- $4672.27 without!

Let's look at fatigue. I love the argument, if you are tired just sleep. If I slept every time I "felt" tired I wouldn't work. What's worse is I go back and forth from bouts of beyond tire to two three days of total insomnia. Nothing says "WHAT DO YOU WANT!" like a woman that hasn't slept for two-three days... So for fatigue... yep, take a pill for that!

Nuvigil- WITH insurance $50 (pending on your insurance you may qualify for a discount card which could allow you to pay as little as $5 a month- to help you stay awake- well at least long enough to finish this blog).- $476.68 without insurance

Leg/muscle spasms (AKA restless leg)- Now this is one of my favorites. Who doesn't love that "I want to run" feeling at 2:00 am? I mean everyone loves being tucked in their warm bed only to bust up wide awake and run in the cold air until their legs feel better. No? Yeah, me neither! So of course a conversation with my Doctor later and I tired a few things. And by a few things I mean TALK TO YOUR DOCTOR! When you hear the side effect warnings at the end of the those commercials about suicidal thoughts- there's a reason! It wasn't because they asked me, but maybe they should have. So make sure with ANY drug you tell your Doctor your feelings (or tell him your feelings regardless). I tell him I don't like the room I'm in because the colors aren't right, but then he knows I'm doing well. So I'm back... So for this wonderfully delightful issue I take Baclofen- With insurance $15. (pending on the amount WalMart and other places do allow discounts- I take too many pills a month to qualify). $24.65- Without insurance (may be cheaper with discount plan)

Now some will argue they absolutely are related others will say one has nothing to do with the other, but I suffer from migraines. And actually I had my neurologist in place because he was already treating me for them. Is there a connection? Maybe. But I do know that heading to the pharmacy hits the wallet! My Replax which is govern by my insurance NOT my Doctor is limited to 4 pills a month. So despite my Doctor telling me how I can take it, my insurance says I can only have 4 migraines a month that require "that" kind of treatment... the rest- well I can suffer I suppose... Relpax- with insurance $50 (discount card is available- but again certain insurance companies/groups will not allow you to use them). $129.61- without insurance

But don't worry! My Doctor doesn't leave me hanging. He is a very preventative type of Doctor. He has had be on Topamax long before people started talking about it. (I thought it was funny). And when they released the generic, I really smiled. Topirmate- $15- $17.05 without insurance

Speaking of preventative, when I first started seeing my Doctor one of the first things he suggested was to make sure I was taking a good multi-vitamin (seemed easy enough) and to add 5000 Iu of Vitamin D. (The Sun?) I laughed! I live in Florida! Really? Can't I just go stand outside for 15-20 minutes? He asked if I wear sunscreen. Well of course, I'm not stupid! He smiled, take the vitamins. So several years later (this was back in 2004), seems this Doctor really has my best health in mind.
Vitamins (always wait for sales) $30-40 total

So if you were keeping track, yes that is $215 a month in prescriptions and vitamins. GOD forbid I get sick! Speaking of sick... I (and with my husbands help) self diagnosed my sinus issues (that were causing me to get so incredibility ill) and with the help of another totally government controlled over the counter medication... 24 hour sudifed max... I can breath clearly now... the snot is gone! I do have to take it every day, but oh what a relief it is. It only comes in 10 day packets, you can only purchase one packet at a time (from what I understand it can be used to make other stuff- DON'T ASK ME- I am CLUELESS!) So I play by the rules and pay my $9.89- (plus tax- God Bless America). Breathing-$43.33 a month- OUCH!

$257.33 monthly survival combined with $100 dollars for the yearly doctor visit costs... and don't get me started when the words "MRI" come up and my deductible come into play!
$5320.26- without insurance and NO Doctor visits figured in...

So the question always arises when something doesn't seem quite right... to visit or wait? Do I save my money, and just track what's going on and hope it doesn't get worse? When do I know its "too late"? How do I make the most of my money, since going in sometimes feels like I was only there to "pay at the door"?  How can I leave and feel truly valued for more than my pocketbook?

The truth is- you can't! You can't have those answers! The relationship between you and your doctor needs to be strong enough that you KNOW the answers. You know the value of picking up the phone, and you Dr knows when to "talk to you" (I know seems foreign) verses when to see you. Often, just talking through some important factors can set you at easy. You forgot he/she told you that eating after ___ was no longer a good idea? Watch Gremlins! Or that drinking too much caffeine not only affects your ability to sleep, but does mess with those "running legs"... That "phone call" may be all that's needed, or it may be an indicator of some more underlining issues that should be addressed. What do you mean you haven't "FELT" your foot in over a month?

Conversations are a two way street, but make sure you are always starting the conversation, and for goodness sake, make sure you are both on the same road!

Sharing the dream of health

One day soon we will wake-up when we feel like it, or when the alarm clock says its time to get up, cause we have work and snooze really isn't an option. There will no longer be a drug fog in the morning, or a brain fog period that reminds us of our illness. Instead, we will rise and just go about our day. No pain, no issues, no suffering.

Yep, that's my dream of health...

Till then, I will continue to wake several times a night, taking something in the middle of the night to get me through. Then waking to the sound of my alarm, reminding me I have work, and struggling to get myself out of bed. Once I am finally out of bed, take a mouthful of pills to "keep me healthy" or just counteract what one pill does because of another pill. Then get dressed (I know the visual is alarming), eat (or in my case drink a protein vitamin smoothie) and head to work. At some point during this routine I wake up. I do feed my dragons and my dogs, taking the dogs outside (never mixing up the two chores). And check on the kids.

At work, I realize that if I could have caffeine life may be better... or not. But either way, I'm tired and my day is long. What time is nap time? Oh, that's right I "grew up" I don't get nap time any more. Stupid rules! If I were president.....
Late night meeting (or softball, or something), then home... dinner... hopefully! Time for more medication. Already! Then my comfy bed!
Ah! Yep, I get to do this all over again tomorrow, cause Behind the scenes of MS, life looks "easy" but it hardly ever is!

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