Monday, December 23, 2013

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!

Thursday, November 7, 2013

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!


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!

Wednesday, August 28, 2013

Sleepy, tummy, sinus, head wave

Okay I realize this is Florida. I understand I am in the greatest, sunniest, nicest place to live year round. I'm in spring break heaven. FOR MOST PEOPLE. But I happen to have a decease that involves of all things HEAT SENSITIVITY! Seriously?!?! Of all the things that could knock me to the ground... but that said- the cold (you know those two-three days) is even worse.

Lately I have been struggling with daily bouts of sinus mess (taking allergy medicine every day seems to be in vain). Only to suffer through increased stomach yuck, and headache nastiness from the rollercoaster of medication I need to take (half of which says "may cause headaches"- seriously?). So at some point I would love NOTHING more than to get off this ride and resume normal life but the wave I'm on wakes me up at night hoping to God I don't get sick on my now shorter trip to the bathroom (no stairs involved anymore). And while I struggle with the light no light, shower no shower at 2 am, my thoughts at some point turn to -gee, I hope all this racket isn't waking up Rich who will be getting up at 4:45 (he finally started getting up later after I begged him to).

Funny how your mind goes through a million thoughts as you try to work through things. No wonder sleep is the last thing I can do... those guys at Duke sure know what they are talking about! My "memory board" needs about 20 hours of sleep to clean house. Too bad my body isn't allowing that!

Ah... well behind the scenes of MS isn't always rosy, but at least its enlightening!

Sunday, August 25, 2013

Ice makes it all better-really!

A while ago I finally got my ice vest! No I am NOT complaining. Last year I applied, but missed the cut-off, or didn't qualify, or didn't have the right amount of freckles in the right orbit of the moon... Who knows... All I know is six months after I submitted my application (as in I forgot I even sent it) I received a phone call from a very nice lady, who totally caught me off guard, and let me know they were done for the season (ah it was mid July) and I should try next year. Umm okay, thanks! 
So with Dr.s Rx in hand I did! I sent it out to three different companies based on referrals I was given. Let me just say upfront, I had no hope again (despite a RX-Seriously). So I filled out the forms (some of them were 4-7 pages and turned them in. I do live in Florida. It's hot like 398 days a year... Okay maybe only 376 but you get the idea... No mater that calendar you are looking at chances are a side of   Hot is on it in my forecast. Good times! Oh and don't get me started on humidity. What it does to my hair along would require a whole different blog that has nothing to do with MS... So where were we.. Oh yes, ICE... Not immigration, the cool kind. So my vest arrived in the mail and I was oh so happy. For me it meant a lot, it meant I could go for walks and not overheat. It meant I could be out at events and not go from fine to heat stroke without realizing it before it was too late. Form me it meant freedom to really enjoy life and not worry about the time involved... Or so I thought. The vest is great don't get me wrong, but like all things it has its faults. This model is made up of nine individual ice packs. Good by the fact that you can lessen the weight by not putting all of them in the little areas, bad by the fact that by nature, ice melts. So over time the ice packs have to be replaced. No it's not 30 minutes, but it's not convenient say if you are away from home all day. Where do you keep the replacements frozen? How do you re-freeze the packets you've used? So yeah, on the surface they are awesome, but if you are going to be at an outdoor event, say a Little League tournament and you don't know the place (hey it could happen) then you have to figure out how you are going to spend the whole day outside in the scorching blazing sun and be able to keep your ice packs frozen... Grant it, I do love my Thirty-one thermals (yep that's a plug) and they work excellent for the long haul... But I still have to think of others and pack things for them... 
Well... Ice is ice... I'm just glad that I have options right now and am able to stay cool... Cause it sure makes a difference. 
Blue vest... Walk ready... 

Saturday, August 24, 2013

A wish

With all that goes on in the world I would be selfish to list all my wishes or think that somehow mine are more important than someone else's. I know there are many that suffer much worse than me, and I know there are many that have problems like mine, that have no cure, but in their case, death comes sooner.

All that said, I do believe I share a similar wish. My weekends are generally the same- my recovery time, time for me and my body to mend. I do clean during the week, but I deep clean much as I can on the weekends (usually Sunday). Meanwhile my husband wakes up each weekend day around 6:30am to take our daughter to work, heads to the grocery store or some errand, and most times takes care of things around the house (the lawn, projects I've mentioned durning the week), and walks our dogs. During his morning routine, I rest, there are days I hop right out of bed and start cleaning, but most days I rest letting my body tell me when it's ready to emerge. Sometimes I literally just lay awake letting my muscles heal. 
With my latest issues to my right foot causing sporadic pain, rest and pain relievers seem to be my best option.  
My wish: is to lift the burden and be the "jump out of bed EARLY" person for my husband. To truly be his better half the way he is mine. To provide the smile he provides for me all the time. To be able to keep him company and not be in pain in the process. 
I feel robbed by MS, not as a victim, no, from the affects of the pharmacy merry-go-round. Taking medication for this that causes that- so taking medication for that which in turns causes this... And so it goes.  I know with all the other deceases out there a cure would be a huge unthinkable wish, so for now I would be happy with just being able to be a little bit more supportive for my husband, especially for all he does for me.
I know I am truly blessed, that said... I still would have just a little wish. 

Sunday, August 4, 2013

Time in a Bottle

When I first started writing this blog it was two-fold. I know I've mentioned I wanted to capture and share life dealing with MS, but for me I've always wanted to be able to look back and see patterns, trends, and remember. The last part is probably the most important part. I often wonder why my Dr wanted to see me so frequently at first, it did taper off but he still wants to see me at least twice a year and that is combined with my regular Dr. Then it hit me, it really had nothing to do with my co-pay, it was because from one moment to the next I can just forget. Seriously! I can forget what's going on with me and that's scary! He is checking on me to see how well I am doing overall and also to see on the grander scale if he can see if I'm starting to "loose it" more and to what degree. While some memories in my life are as if they happened yesterday, I will sit and be bothered by other details that I can't remember. As though trapped in a vault of time, I know they are there, I just can't access them. Then as though someone found the key to  the files the memories will flow as though I had never forgotten it at all. Can be very frustrating.

So yes, this blog serves to share the ups and downs of living with MS. But it also provides a glimpse for me as to what in the world was going on in my life...
The working out details to stay cool when I clean my house. The awesome fun I have spending time with my husband. The great products (the chillow) I use to help me sleep just a little more comfy. And my fight to stay active despite horrible fatigue... walks are great after a nap!
My blog may be super funny at times, and super serious at others, but regardless I hope you enjoy this view and are able to get a little better understanding that helps you in your interactions with someone with MS. Cause really many days are just ...time in a bottle.

Tuesday, July 9, 2013

Lectured by my Doctor- Whatever!

Okay, so I had a migraine. I called the office Monday morning (July 1st) complaining and begging to get in. My medication was barely helping and I was dipping into more than I was suppose to take. I let the nurse (who has been my nurse since 2004) know I wanted the shots. That is NOT something I ever ask for! I was in serious pain. She said she was so sorry but they didn't have any appointments because of the holiday, and the earliest they had was the following Monday (July 8th). I took it! She stated that if they got ANY cancellations they would call, and I said- "PLEASE DO!"
July 8th... yeah- they never had any cancellations. When I got the phone call on July 5th I got all excited, only to be let down when the woman on the other end was "confirming" my appointment. Seriously? YES, I'll be there... Or I'll be dead- in that case I won't need the shots.
So I'm sitting in the room and in walks my cute little Doctor (Yes I have told him I could take him from time to time- today was no time for jokes). He comes in looking over my chart and starts in... "Oh Aubri, I just saw you... why am I seeing you so soon- it's not because you like the chairs." I indulge him but telling him how much I've missed him (in the two weeks since my last appointment) and I just couldn't stay away and besides I love paying co-pays! Now he knows I've gone off the deep end. He asks what and how long, and when I answer his first response is to not feel bad for me, but to chew me out. WHAT! He starts in about how I should have called in and request an earlier appointment- ah- I don't control his schedule. Then he says I should have requested certain drugs- ah- I don't normally "ask" for any drugs- ah check the record Doc! As he is looking over my forms and notes (this is my 5th file- he really is an awesome Doc) he says- "Aubri, you can't let this go! What am I to do with you?" At which point I quip- " just fix me and lecture me when I feel better". He laughs... saying, "There you are! Okay... I was worried for a minute". Returning to the room he says today I needed a double... okay- whatever- just make it work- and fast! A double Occipital Nerve Block later (as in both sides and a large dose) some relief was on the way. Then as I am getting ready to leave he turns and says... "you know, you keep this up I'll have to use a pump to treat you." I sign and walk away. Whatever!!! I wasn't in the mood for a lecture and I certainly wasn't in the mood for a threat! He should know better anyway. For now the original local anesthetic has warn off, and the medication (steroid) really hasn't kicked through yet so all I am really left with in a really sore pain in my neck from the two injection sites with hopes neither bruise. Spent last night with an ice-pack- here's to hoping!

Wednesday, February 27, 2013

Florida weather

Okay, I really shouldn't complain. And I'm not! Let's get that straight.  I do live in a paradise of sorts. There are approximately 6 super cold days out of the year... 359 days of warmth, 6 days where I am looking for my gloves and scarf- 6! BUT (oh yeah, I am seriously going to talk about those whole 6 days because one of those is sort of coming- and yes I said sort of) those 6 days are grueling on my body. In some cases it takes a couple of weeks for my body to fully recover. That mac truck... yeah.  So back to my "sort of" statement- I know- crazy- but Monday it was 82 degrees, come Friday it will be a high of 62-  (with a low in the upper 40's- ah that's a 20 degree difference!) If anyone is counting in five days the temperature dropped 20 degrees!  That is a TON of pressure in the area... my head is a mess!
When people "see" me they don't "see" MS. They don't SEE a woman in a wheelchair (what people assume), or a woman with a cane, or walker. I don't have a dog hanging out with me to make sure I can get through my day (although either one of mine would love to). I don't have an oxygen tank or any other medical devices. What I do have is a water bottle, a cell phone, a cute purse, a cute bag that holds all my other stuff for the day (I sell both the purse and the bags- and their personable too!).
When I walk fast its not because I'm in a hurry, well I might be, but its more likely because I can, I mean because I can walk fast... I will walk quickly for as long as I can. The heat (yes that bothers me too) will slow me down when it gets super hot, but I will drink lots of water so I can continue to enjoy my life!
So as the wind blows, and the rain hits, I'll remind myself... the sun will come out tomorrow!

Island Grand, St. Petersburg Fl, Sunset

I mean seriously... how could I really complain when THIS is my life?

Friday, February 15, 2013

Rain, Rain Go away!- Sort of

Living in Florida I am blessed by temperature in a way. While "heat" will forever be a concern, air conditioning can be found anywhere and the beach is great as long as you remember to KEEP COOL!  The best part, is the lack of freezing cold (in the part of Florida I live in). For the most part we have 4-5 "super cold" freeze warning related days a year, meaning the temp drops into the 40's and 30's. Those are the days my body truly thanks me for my move from Ohio to Florida. Cold and my joints don't mix for long periods.
Rain... You would think living by the water we wouldn't need too much. OH SO WRONG! Unlike up North, we don't get snow, so from October to May (ish) it becomes our dry season. Once "hurricane" season is over we start a new season- FIRE season! So most people are relived when the drops start falling (we've had a wild fire burning totally our of control for several weeks now). But then there are people like me...
Gray skies don't help. They don't help my mood, my spirits, my life... They just don't help! Once more, I get cranky! Why? Because well... It's dark, its GRAY! Not the "Shades of Gray" naughty gray... GRAY... dark, yucky, gloomy, gray. They gray that makes people mean on the road gray (cause you know people need an excuse).  So YES I TOTALLY get that the ground needs the water, and to prevent drought (again) and watering restrictions we need as much rain as we can get... but this several days in a row thing... it's just not working for me! I need the sun to peek through the clouds and warm things up a little, after all this is Florida, the Sunshine state!

Love my beaches, and I love my Tradewinds!

Sunday, January 27, 2013

My Beach

As anyone who follows my life along knows, I life in heaven... what I mean by that is- I live where it gets cold three maybe four days a year. Today, low 80's maybe a couple clouds. Super nice breeze. HEAVEN! BUT it also gets HOT, and when I say HOT I mean the hot where they tell you not to leave your house hot.
Today, was not that day. I enjoyed waking up to the sunrise (the second day in a row), and then while the breeze was still cool, enjoyed a nice walk.
I am still good for those. I got to thinking as someone kept cutting in front of me, why are people so rude? I mean, I understand that people have places to go, but does everyone need to be rude?
I don't know, but I do know that I enjoyed my walk, I enjoyed the breeze, and I really enjoyed my company.

I may struggle day-to-day with symptoms here and there... but today- behind the scenes... this MS Chick enjoyed a GREAT DAY!

Sunday, January 13, 2013

Cold, Flu, MS?

Leg pain, fever, headache (like a migraine), sinus pain, hit by a truck feel, fatigue like no one's business! CHECK< CHECK< CHECK< CHECK< CHECK < CHECK! MAN!
As a person who suffers migraines and takes daily medication for everything listed (other than the truck feeling) each issue on its own could be diagnosed as just another issue associated with living with MS- doesn't that just stink- OR my migraines (even better). But this is flu season, so to add to the mystery of it all, and complicate matters we add in the fever. Now looking at any of your average medications to treat MS you find side affects- Fever, chills "flu like symptoms". SERIOUSLY PEOPLE!!! This is NOT helping!
My NORMAL feeling (HA, I said "NORMAL") is NOT FLU, so I use that as a barometer. I figure that makes sense. (Ha, did you see that- I said "sense"). I figured if out of months of taking the same medications I didn't have my husband inform me I felt "warm" and I didn't feel like the mac truck ran over me, backed up and ran over me again... we were pointing in a different direction. Medical degree not included. But just to be on the safe side I figured I would contact those people that studied to obtain one.
The call that TOTALLY cracked me up! So I call my primary doctor, and remind them I have MS (you know a decease where my immune system fights itself cause it doesn't know any better and GOD FORBID I get around sick people), they tell me they are completely booked, have nothing, but recommend I go to the walk-in clinic- that is where they are sending everyone that thinks they may have the flu. Ah STOP! So I may or may not be sick, BUT I am going to go to a clinic where a bunch of people are pretty sure they are sick? Somewhere, I think I am missing the point... Yes... I want help, but not at the cost of becoming even sicker from people I am sure are taking every precaution of remaining sanitary. (YEAH RIGHT!) I instantly had visions of people in a waiting room coughing and hacking on magazines and wiping there noses and reaching across me while trying to grab a copy of "Time"... No! WebMD works just as well. Grant it all things eventually lead to cancer or death of you "click" enough things but I was willing to take that risk. I know enough to know, keep my hands clean (ah duh, really), drink lots of fluids (good thing my husband keeps enough wine in the house- I mean Gatorade of course- and I drink water on my own), and eat healthy (by healthy a supreme pizza should count because it has all the food groups right?- yeah yeah I got it). And rest- (you are talking to the queen of rest- unless there is a really good football game is on and then all best are off- food sort of goes out the window too- sorry!). 
BUT seriously, I KNOW the difference between- CRAP my nose is running away (need more decongestant), mac truck (Thera Flu warranted!) and MS (got MEDS!).
The big thing is KNOW the signs, KNOW your body, and for goodness sake- STAY AWAY from people! Get REST, even when you think you are superwoman (or man), the pillow is a wonderful healer...

Because after all...
Behind the scenes of MS...
Lives a GIRL who chooses to LIVE HER LIFE!

Wednesday, January 9, 2013


I have been so proud of myself for not getting sick. I wasn't bragging, let's set the record straight, I was proud of what I was doing to remain healthy. But alas it just goes to show all the precautions in the world can't protect you. What a bummer. The worst part is while there are those around me that love on me and want to see me get better, many just want their normal expectations fulfilled. So while I fall into a fatigue sickness black hole, don't worry my mind is working overtime to answer life's issues. After all, I might have MS but I'm still a superhero!

Thursday, January 3, 2013


Who would you donate $100 to? That was the question my youngest daughter's school poses to them each year for an essay question. While most head straight towards breast cancer- that one is easy, just about everyone knows someone that has been affected and or lost someone. Some tackle rare deceases closer to home. Some want to support the troops- ALWAYS HONORABLE!
I got home late last night from school (my quest for world domination- okay maybe not that- I'll "settle" for my Masters) at 10:30 pm after a LONG full day at work. My kids were all in bed - normal, even during a break- have I ever mentioned I've got GREAT kids- I do! As I walked through the door, sticking out was a notepad on my office (Thirty-One Company) desk. I picked it up to see what it was figuring it was a "Dear Mom, went through the new catalog- it's awesome- again- January 4th I want..."
Instead, I found what was inside my 10 year-old's heart...
Her essay contained nothing but love for me, a little fear that she may someday be diagnosed with a disease that has no cure, and hope that her $100 donation to the National MS Society would continue to help provide the valuable time she has with me.
Powerful words from someone so young... so while I have no idea what the outcome will be for the actual contest. I do know she continues to win my heart over...