Monday, October 28, 2013

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!

Thursday, October 17, 2013

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!

Please support my fellow bloggers! Check them out and support them too! Leave a comment, let me know you stopped by. Thank you for your support too :)

Monday, October 14, 2013

Nagging Leg pain

Having missed most of Thursday, and all of Friday, I had to laugh (to myself of course) coming into the office this morning with my calf wrapped in an ace bandage. For the record, it stopped helping around 10, the throbbing jumped up the volume and has gotten worse since. (BOO). Anyhoo... I went into my co-workers office to ask her a question (having not really been here since Wednesday) and she says, "you have something wrong with your leg"? What I wanted to say was, "no, this is the latest fashion trend, all the cool people are doing it!" But instead I told her the truth. What happened next never surprises me. Now I am the only one (to my knowledge) in the building that has MS. I do not currently have handicap parking (in time grasshopper), and while I do/can have several accommodations, I don't really take advantage of any, currently. I did for school.

I do use FMLA, but even that I tend to use very sparingly. Not because I am in denial (don't need to even go there!), but because I rarely need to be out because of my MS/ and or migraines. I am able to keep both very well maintained. When I am "out", I am OUT! The term "sick" always cracks me up. I don't have an immune system, the medication I am on (Gileyna), doesn't help. So getting a bug is caused from what? Good question! One would say its from my low immune tolerance caused by my MS (instant line to FMLA) others would say people get colds, that's life, that's why you have sick time- not protected under FMLA. But while most people recover from a cold in a day or two, I do not!

That brings me back to my leg pain. I started thinking about it and of course what better method to really hone in on a date than my blog. For those that follow, I mean it when I say I really do blog "Behind the scenes" to not only let it be known what goes on behind my awesome smile, but so I can keep track. For the last several years when I would be asked when I found out I had MS I would instantly say October, 2005! It wasn't until recently (moving to our new house), I came across copies of my initial MRI's from that fateful month... in 2004. The 2005 MRI's that I had a copy of and I always used as my "date" were actually my one year progress follow-up. Everything I thought, timewise, shifted! Crazy! So with my leg pain, its like anything else, the Dr will ask, how long has this been really bothering you? I started looking through and noticed, a wow, a while!

Now I have been taking Baclofen for leg spasms for ah like ever. So I think a part of me has written a large part of the pain off to really bad spasms. I mean, what is the the difference between pain and spasm? They both hurt. Isn't a spasm pain? So how would you know if a leg spasm pain is more pain? Not to mention the question- how long has it been like this? I did mention the "pain" at my last appointment- 3 months ago and I have mentioned it in the past. The answer came at looking at my Baclofen prescription, which is already crazy high. For the record that makes you sleepily and I take something for fatigue already... so I continue in PAIN, not so much a spasm, although who knows. I do know this, I like to think of myself as a tad bit more observant to those around me (or those that don't show up for a couple of days)...

Just my thoughts from behind the scenes of MS, doing battle- kicking butt and taking names (left leg still works!)

Friday, October 11, 2013


My heart warms as more and more communities are coming together to support each other in the battle of find a cure for what ails us. So often people act as though if you support one group it will come at the cost of another. What most fail to understand is that often so many issues mirror others and that is what causes Dr.s to delay giving correct diagnosis. Image being told you could have a brain tumor or MS. Which would you want? Really? I'm being serious! While one could be serious enough to kill you during the treatment, the other has no cure and is a long-term sometimes painfull reminder of no hope. Hmm... Possible death or life of no hope. Who would've pick the tumor? Yeah that was me back in 2004! 
I can still hear myself immediately after the MRI, looking at the technition and saying, "so I've got a big grapefruit tumor right?" He looked at me like I was nuts. I mean who serious prays for a tumor, yeah this girl! But there I was rationalizing that an ice cream scooper, scar, flowers, and some gifts (people better get me gifts if I'm getting my head cut) later I'd be back to me. I figured I'd even through in a case of amnesia saying I had no clue what a dishwasher, vacuum cleaner, or broom was... Then I figured people knew I was back! Oh well! But alas... As the story goes, no grapefruit! 
I am still amazed to this day how some illnesses are "rated". I call it traction. I would never look at someone and say oh you ONLY have.... Seriously? I don't have it so how could I know what they have to down play it? Unless they are complaining about getting glue rather than stitches. At that point, seeing my scars from stitches gone bad that had to be stapled, yet glue... Shut up! So when you've been there, walked a mile in there shoes, then yes, you get it. But if you have no clue what it's like to depend on people to help you to the bathroom (I only have because of surgeries but not regularly) then I suggest not telling people you know how they feel. If you have no idea or the concept of fighting to stay awake due to horrible fatigue, battling numbness, or having pain one day that's so intense you just cry only for it to be gone a few days later- then you don't know what it's like to live Behind the scenes of MS.
But I'm a warrior, so I'm not going anywhere!