Thursday, December 13, 2012

MRI Trackers

For those of you keeping track... yes my MRI did come back with great results... After all these years my MS has not continued to "get worse". Something that is of some sort of miracle! My hand on the other hand (sorry folks) is another story. Grant it, I did have to do a TON of typing this week. Between a paper and work, I've been on my computer quite a bit. That stinks! My hand has not had a break. My bruise is a deep one, so on the surface of my hand is the tale-tell light brown shades of bruises. But to the touch- Ice pick feelings all the way. Gripping items is so painful it makes me wince. But I have been trying as I might to grin and bare it as much as I can.
I guess all things considering, I'm lucky. But today my eye is twitching, and I am NOT in the mood to deal with that! Not in the slightest...

Ready for my bed! Too bad its 5 and I won't see it till almost 9!

Makes me ready for the beach!

Monday, December 10, 2012

Drum roll please!

Well the results are in! After a HORRIBLE MRI last Friday (with a nice bruise to show for it), my results are in...
Finding out I had MS in 2005 about killed me! Finding out I had 4 lesions was a blow... how long had this gone on? How did I not know... Oh the questions... They swarmed... I did get lots of answers... National MS Society Great resource!

The years continued on and if you have been following along you know.. I've visited the "tube" a few times...

Well the results are in... yep... since my initial 2004 "finding" I have 4 lesions! (STILL) NO MORE! Yep! My medication is kicking butt and taking names! My one lesion continues to shrink! - love it! and I have another that "seems" smaller although they would NOT go as far to say that, but noted the dimensions as appearing smaller (SAME THING IF YOU ASK ME!)

So... a WIN in my category! Now... if only I could get my hand to stop hurting!

Tuesday, December 4, 2012

Naps are good- right?

Why did we give up nap time? I mean when we were little we were told "take a nap". Then we got all big for ourselves and didn't need a stupid nap. Oh let me tell you- 10 am, yeah I'm ready! 2 pm doesn't sound to bad either! I think we forgot along the way how great naps are.

My dogs haven't, that's for sure. Those two run around like crazy teens, then bust into the house and poof- what- nap time... Nice. Now don't get me wrong I don't want to be a dog, licking myself isn't on my to-do list. But seriously, I wouldn't mind laying on the couch, moving to my bed, and then back to the couch, go for a walk, eat, drink some water, go for a walk, take a nap... Okay maybe the dog thing isn't that bad...

I wouldn't have to worry about finding matching shoes in the morning. But I am sure I am not prepared to just give up shoes. Ah, shoes! One of my wonder vices. Another reason I need a nap...
I've taught her how to nap well!

Sunday, December 2, 2012

World wind travel

If someone told me that a person with MS would drive 17 hours straight I would laugh at you... oh wait... that person is me! Seriously! Florida to Ohio! Then tragedy struck and with my Grandmother's passing a service in Michigan was added to my trip. Almost 6 hours away, I had to figure out my plans. I needed to get home (Florida) but service was Saturday. So I did what any normal person would do. Saturday morning, I drove to Michigan (6 hours) attended the service, then drove home (6 hours). I then used Sunday to rest my eyes, legs, hip, and most importantly my back (we will leave my rear end out of it). Then Monday came, at 5:05 I had my 2 kids in the car and we "rolled". Well they slept, I rolled... I drove home...16 1/2 hours later I pulled into the drive. Nuts? Maybe. Driven, Ha! I know that is rather funny. But I have always loved to drive. I guess with MS that is one of my biggest fear. THAT DAY. The day when I can no longer drive, not 16 hours but for 5 minutes. It's a reality I know. Hopefully not for a long long time, but when that day comes it will be about as bad as the day I found out. Some things you just can't get back. My freedom to come and go, that will be a big one.
Since I could drive I have always loved the ability to "just go". Back in Ohio I would drive around when things were "yucky" and enjoy the scenery, well gas was around $1 at that time. When things were real bad, I made the drive up North to the lake to take it all in. That freedom of the drive, is something I can't image not having. So when people ask me, "why on earth would you do it?" It's simple... cause I can!
Love hitting the road!                                    Drive in style!

  States always welcome you                         The leaves are beautiful        

Just nothing like the views!

Monday, October 15, 2012

Leg Pain

Two weekends in a row... what gives? I think if I slowed down during the week and rested I would probably find the same thing, but for the last two weekends the minute I rest my legs let me know that they are NOT happy. The pain I feel in BOTH legs is so not cool. This weekend I ended up wrapping BOTH legs in ace bandages and did feel instant relief. BUT the point is, I didn't get to LIVE my life. I had a "to do" list that just didn't get DONE. My floors didn't get clean, my rock garden out front- not weeded (I actually like doing that), and I didn't trim the branches to this really cool growing (yes I am growing stuff) plant! I had school work too.... nope didn't touch it. I did manage to get to a party. That was super awesome. Not because I got out, not because the party was awesome (okay the party was awesome), but because it was one thing on my "to do list" that did get DONE. I did take Lizzy to the library, but only because in getting costumes I talked her into the cutest costume and then when we got home she reminded me why she needed a costume to begin with. OOPPS! Funny thing about my memory! So yeah, come to remember (not sure why she didn't bring this up) she was reading a story about witches and would do her report on that- so she needed a witch costume. We did find a new book to match her costume so all is not lost... Ahh...
Now it's Monday and honestly, I think my legs are at it again! I take enough medication that really this shouldn't be an issue... the fact that I can stay awake... That is a miracle!

Well- at least I got some stuff done- right?

Wednesday, September 12, 2012

Kidding right?

So I went back to school for my Masters cause I guess in my head I figured if I did it now it would be better than later... That sounds good! As I sit in my class I swear my instructor is talking to hear himself talk because he has yet to say anything I have needed to hear... For this I am paying how much? All I keep thinking is I could be in bed, snuggling. I could be on my couch, watching something cool- or I could be doing I don't know ANYTHING but sitting here! Instead I am fighting to keep my eyes open, maybe because of shear boredom, maybe because I have been up since 5:45am... but I am convinced that the last week of class is by design is created to torture us! Plain and simple...
My body aches and now so does my brain.... 10 pm could not come any sooner! I am floating in a dream state... I wish!

Saturday, August 11, 2012

Giving is just awesome!

Today is day 3 or 4 of waking up because of my legs screaming pain rather than an alarm clock... NOT the way I like getting up! Just totally stinks! I have long joked that I have MS 5-10 minutes a day (the time it takes me to take my medicine). The rest of the day symptoms or not... I just live my life and work around it. I go to work, go to school, go to my kids games, and watch my husband umpire- I live! I also nap. Weekends are known for my naps some of which can be 3-4 hours sometimes even longer. The biggest thing I have learned is to not get hung up on a weekend "to-do" list. I know there will be things I have to do, school work, some house work, a kids event, and now my Thirty-one business venture (which isn't really work at all!) But that is all a matter of priorities and putting everything into its place...

Back to my "title"... I have quite a few blessings in my life. I am blessed with a supportive husband, a knowledgeable Dr., and resources that help me through my treatment. A month ago I was able to get in contact with a local group that always has people in need. I was able to connect with such a woman and now her medication needs are taken care of for the next six months. Handing it off and the look on her face was just part of the feeling, the smile on face was wonderful. Then her "hug" request was so cute.... She asked me three different times, I said yes each time... I think she would have hugged me all day if she could... just another reminder... giving is just awesome! Makes your hardest day feel a little more peaceful!
Watkins Glens, New York

Thursday, August 2, 2012


Heading anywhere can be challenging... knowing what to pack, what you need, how long you will be gone... then add MS. Medication becomes an issue, travel arrangements themselves become an issue, and my favorite- do you even get to enjoy the trip because you are so tired, sore, and just worn out from it all? Travel is one of those things that you really need to have a plan. Some kind of strategy to keep your head on. I am certain that it is easier to have a plan and try to stick with it (including what happens when you just can't do something) than to not plan and have to cancel what you had scheduled to do.
A headache, leg pain, or fatigue can just finish a day. It helps to make sure you have a great support system, great people in your life. I am beyond blessed with a husband that encourages me and kicks me in the butt when I need that too! But he is so great to be my biggest champion even when he isn't right with me. So the times we do travel together... we always enjoy our time :) Travel with the one you love!

Saturday, July 21, 2012

91 feels like 97???

"Feels like"... when it's hot and your brain is boiling and you hear the those words am I the only one that just laughs? And really- 91 is HOT! 6 more degrees didn't really throw it over the scale SO much that it ended it for me! It really only says- NO DUH! I kind of feel like its the same way on the other side of the scale... when its super cold your body doesn't set in and say I will maintain the state of "okay" but drop another degree I'm shutting down- hope that "feels like" temp doesn't get lower either.  Yeah- no! My body know three temps HOT COLD and Perfect... Yes... I've become goldee locks- oh well! But man, when that thud in my brain starts going and I am grateful for my ice pack... you know it's HOT! Looking forward to dinner at the beach tonight... or at least somewhere cool! Yes.... I LOVE MY FLORIDA beaches!!! Just not being HOT!

Friday, July 20, 2012

It's HOT it's time to stay COOL!

Summer is here... I know that I am pretty sure that anyone who steps outside is aware that its HOT. Last I checked "heat" is one of the biggest things in the MS world we need to avoid... GREAT! So a WHOLE time of year and I'm suppose to "hide"... Nope! I've got stuff to do!

At the beach, on the go... with all the munchies... it may be hot... but the water is just right, and the thermal cooler is always ready for whatever I need! I love the beach and the beach loves me.... don't let MS slow you down! Always find a way! Thirty-one gets me to the beach... what gets you were you want to go?

Thursday, July 19, 2012

Just smiling

Today I smile... why cause sometimes you just do! Life throws all sorts of stuff at you and sometimes you just wonder what on earth am I doing? But then you just sit back and think about real life, real hardships... for that, I have reason to smile.  My family loves me, my friends are wonderful, and my kids are great... I have plenty to smile about... life has its ups and downs, but with the people in my life I'm going to just keep on smiling! Thanks everyone!!!

Saturday, July 7, 2012

Florida... for health reasons?

Anyone that knows about MS, knows that "heat" is something that you always have to be very careful about. Getting overheated is a serious issue. But then living up north can be just as bad. We had one maybe two cold days this year... I was beyond miserable. Every part of my body hurt, parts I didn't think temperature would affect, and I found that I couldn't cover up enough to stay warm. That was scary. Then I found out it was 43 (the wind chill was 34)- I know my Northern family is laughing thinking that's nothing... But I seriously thought if I was out for another moment I would die. Can you image snow? I wouldn't last a day!
So even though the daily high average lingers around 85-90 most of the year... inside, the A/C works great... everywhere! And when it gets real bad- that just means I haven't been to the beach, I need a good breeze to cool me down.
Yep... Florida for my health!

Monday, July 2, 2012

Health Scare

Not that I try to be cutting edge, but I do want the best in treatment options! The day I found out I had MS, my Dr laid out the treatment options and I started right ways. I didn't play the wait and see game alot of other people do. Nope! For me, I started on Copaxone right away! One tiny thing I notice within about a year I started to get muscle atrophy. The most affect and noticeable area was my arms. My legs seemed to get it too, but my hips and stomach didn't seem to be phased (that stunk)...if ever an area to disappear THAT area could have gone away and I wouldn't have shed a tear! No such luck! Anyway, after a couple more years and a bunch more shots later (taking every day like a good girl) it really gets old! I see why people just stop. I wasn't going to be THAT girl! Then came a "study"! I still had to take Copaxone the first time through, but there was a PILL they were testing... ah.. sign me up! So with lots of testing, eye exams, MRIs, and blood work like crazy BOOM! It was official... I was cleared to take a new drug! There was/is one little catch... if I go off the drug for too long I have to go to the office for observation when I restart so... they can make sure my heart doesn't stop... hmm... that's not like serious or anything...
Well, fast forward a year! I've been doing ok... as you've followed along- I think I might want to re-read to determine if that last statement holds any real bareing. But all things considering, between work, finishing one degree and jumping into another (I might forget to mention from time to time how crazy I am), juggling the kids, and starting off with my 31 business... I get to now... great you are up to speed! So time for my monthly re-fill and wouldn't you know it the company has changed they need an actual re-fill but don't bother trying to get it. Long story it becomes a huge MESS! Then out of the blue I get a huge chest pain! Call it whatever- stress, anxity, lung issues- whatever! It hurt to breathe and every time I did I thought my chest would collaspe- or something... so I finally did go to the ER (which I might point out I avoid at all costs cause its always a total waste). They get me in right away (mainly because my Brother-in-law works at the hospital and met me at the door) and hook me up and run me through all the "heart attack" tests only to drug me up and send me home to rest. The best part was 5 days AFTER I got out of the hospital my regular dr calls to follow-up and says "we JUST got a fax that you were in the ER, do you want to come in?" Hmm... as inviting as that sounds... Nope, I'm good! My neurologist called me 2 days after (that Monday) to see how I was and what I needed... so I've covered!
If I've learned anything from this WHOLE thing... having a primary care doctor is "nice", but having an EXCELLENT specialty Doctor is what is really important! Everytime I mentioned his name, they either knew him or they were his patient... it doesn't get better than that! Love me some Khanisami!

I like to call this Picture.. "Go Fish"... do you have any 2's... go fish....   Dr. the patient is wondering what is wrong with her... tell her she needs to rest... do you have any 3's... go fish... this Ipad game is SOOO cool!

Sunday, June 10, 2012


I love waking up and hearing nothing but the fans blowing. Sometimes it can be a little scary- What are the kids up to? What time is it? How long did I sleep in? Am I going to be able to get everything done that I need to? But at the same time knowing that I was able to rest in comfort (for a change) is nice- and weird. I guess that's the biggest part of weekends that I really enjoy. But at the same time it does mean there are things that don't get done. It's a give and take. In the silence however, I can think. That can be dangerous, very dangerous. I often wonder how many years do I have left. I am not referring to left living, I mean left living at my current state. I am a realist and I know that I am very lucky. Every time I go to the Dr. I know there will be a day that I won't be so stable, my hands not so steady, and walking won't be so easy. My biggest fear is where this all started... my eyes. I don't want to loose my vision. Or be looking through a cloud. I think sometimes, well I know I take it for granted. So I know that the day I wake up (again) and can't see- I fear the most. Not being able to walk, I sort of have given into the idea that day will come, but seeing... I don't want to face that- again. The silence, while wonderful and a chance to catch up on sleep, often really needed, it also gives me too much time to think about all the "what ifs"... its in that silence that find I am grateful I have the people in my life that hold me and walk with me... behind the scenes!

Friday, June 8, 2012

Right leg ache

My right leg for the last hour has just been killing me. No I wasn't running. Yes, I have been wearing the cutest shoes. I have worn them I million times. This is my calf. And PAIN that makes me want to run, but then rub my leg. PAIN! The pain in commericals. PAIN. That pain you hear about with fire, pins, needles, kicking like a kid. PAIN... Screaming right now would not be such a great idea. Not sure my go workers would think so highly about it. I would feel better. No, no I wouldn't... DANG! I do know that I have a prescription that speaks to this... at home.  Me... not there! Then I hear it... a HUGE rush of water, like a river rush up against the windows. Seriously? Am I that sensitive? Can't be! Won't have it! Dang! I do know that I want a heat pack, and a blanket... dang not cool... Just in pain!

Thursday, June 7, 2012

The weekend and weather

Pacing myself as this weekend is jammed packed full. I have school work like a Queen! And I'd like to find time to cuddle up with a book and read. HA! I think that is the funniest thing I have ever blogged. I said FIND TIME! Ha! How is it that my mind tells me I have all day to do something and the next thing I know it's time for bed? Just crazy! All I know is that its Thursday, and I am totally okay with that. I was looking through my blog "stuff" and realized I hadn't posted. Well that isn't good! I guess some of it has to do with being busy (which is good), and part of it has to do with the whole MS craziness.
Part of me is struggling with the different phases of MS and right now I don't want to deal with it. Summer is harsh this year. Its June and already the heat is killer. While just about every where has A/C, I hate the idea of not doing something because well, I could get too hot and not realize it. Seriously? How flippin lame is that? Nothing like getting sick cause your stupid! Okay you aren't really stupid but your body sure is! While everyone else's body is sweating and saying HEY need help here, mine yea not so much, well not until it's a little late. Great! I think I want to lose more weight just because when some hot paramedic is tending to me, I don't want "overweight" written on my chart... hey, you have to have a sense of humor!

Okay, need a beach breeze!

Saturday, June 2, 2012

Exercising- WHO ME?

 I always promise (myself) each year this will be the year. My son is turning 16! Crude that means I have been officially overweight for 16 years. My daughter was born 10 years ago. I was diagnosed with MS seven years ago. Yes, I know my numbers! Why? Well for one, it's important for me to keep track WHILE I can. That is part of why I started blogging to be honest. So I could look back and say "oh that's what happened" when I may not remember, and I also wanted to share my journey through the world of MS (Multiple Sclerosis) for many people who think I am simply refusing to let the world know if I am married... (MS is not about that.. nope... sorry). So all that said- I gained way beyond the amount of weight with Erik (bed rest did not help). Depression and lack of support from his father did not help afterwards, so I was not able to just bounce right back. Dang! Then time... I moved, got married... and miss Elizabeth came along. While I had TONS of support this time around I was LUCKY and did not gain as much weight, I still didn't need to gain alot to already be overweight... Start big, end big! Her "weight" didn't just melt off either. :(  A little less than 3 years later and I woke up in the cloud- you can read all about that in previous posts. So talk about depression! WOW! What about my career... I need my eyes to work on patients... so a career change later and yep you guessed it, I'm still overweight. Now I have a new struggle. The girl that played everything, ran, loved to swim, did everything that involved dirt, overheats beyond easily without even knowing it.  GREAT! So much for a "plan". Love walks, but how do I just take off- get stranded somewhere and end up calling 911- GREAT! Bike rides? Only if I stay close to home, where is the fun in that? Go to the gym!!! YES! Machines, elliptical, treadmills, it will be good, right? Why do people get the idea that if you aren't sweating you aren't working out? People let's not try to kill me!!! YOGA! Tai Chi-Okay! -But everyone wants you to pay a bazillion dollars on top of a "club membership" what gives?  I just want to LOOSE my belly, hips, butt, thighs, and giggly arms.... without loosing my mind! Didn't think that was too much to ask!!! I guess I should be grateful I can complain at this point, I know so many of my MS buddies are facing issues like... I wish I could feel my legs, I wish I knew how to stand up... so yes, I am very lucky! But I am HOPING that by loosing my weight and staying healthy- THOSE questions will be decades away!!!

Thursday, May 31, 2012

Work and struggles

I have a full time job, I am a full time mom, I go to school full time, and I am a full time wife... being in bed is not something I really have time for... Believe it or not! Yes I sleep, but taking a few days cause well I have no choice creates a backlog of work which then creates a MS stress cycle. Yep I went to work. With my fan turned on and pointed right at me, I sat there to opening and sorting through the massive email determining "critical" from "till another day"... going through papers and "recycling" to dealing with, and setting aside... I think we all need a vacation after any time away from health issues. It should be automatic! Just because once your are finally healthy you come back and get overwhelmed and all stressed out... Wish I really could wear a real superwoman cape to the office... I guess the hardhat will have to do!

Wednesday, May 30, 2012

In bed

MS world FLORIDA is HOT! Oh I mean it! That said I am in bed paying for my weekend disrespect of the heat. Yea- I know, I know... I KNOW better! But now I am paying for it! So what's a girl to do... yep, blog about it... I decided log ago I wasn't going to let the words MS slow me down. But sometimes my body reminds me otherwise. Yep... this is that time. So not being able to get out of bed is one of those things that BOOM reminds you real quick, Hang up the super woman cape and take it easy... Note to self- Superwoman had to take naps, that's what commercial breaks are for! So short blog as I feel a nap coming on! Dang!

How do you deal with the heat? Love to know? Boating? the pool?

Monday, May 28, 2012

Sun & Heat

Running out to the beach has its pluses and minuses. While being out with the family is a great way to relax and enjoy the nice breeze off the gulf water... its still HOT. The sun is still shining bright. Remembering to drink water is key, and I am not talking about ocean water. I am always surprised how quickly I will go from full of life, full of energy to laying in bed and passed out for 4 hours. Yea- last night I was OUT- woke up at 8 just in time for game night. I lost, but at least I had a great time with my hubby and the kids. I won't have too many more weekends like that! As it was our oldest spent every chance she could- out of the house... so it's happening already. They grow up fast! For now, I just have to stay cool, and keep having fun... they way I can!

Friday, May 25, 2012

Oh wow It's only May

107! Seriously! You've got to be kidding me!  I climbed into my car turned it on and boom, there it was, 107! So not right! It was starring right at me reminding me how hot it was and that it was only May. Not cool- seriously. I turned on the A/C full blast and got moving quick, windows down getting the hot air out. The next morning, I woke up with my left eye twitching (this morning). Really? Cause I need that! I have stuff to do this weekend and I can't be winking at everyone. This is just not right... I would like to have our polar ice caps to go ahead and send some ice down our way. Just one or two blocks will do. I know that it isn't good but just a nice breeze.
What do you do to keep cool? Leave comments... I'd love to hear from all my readers!!! You guys are such a great support!
Thanks for reading!

Sunday, May 13, 2012

What really happens

Always amazes me in the life of MS the world of the crash. The big push, working to get something done, pushing yourself to beyond the breaking point and then your body says ENOUGH already. That came Thursday/Friday. Really Wednesday my body was already asking the question but as usual I had "stuff" to do, like school after a full work day. Thursday- I know my daughter had something (at this point I'm in blur mode), come Friday I had a meeting in Tampa that morning. As I was sitting there seriously looking at the clock and praying I was not volunteering for anything- all I could think of was- could I seriously drive home? Was it safe? Could I make it? I literately looked in my bag to see what kind of medication I had to "help" me get home, the stomach meds would keep me from having to stop, but wouldn't help the sleep issue. Long story short- I made it! My hubby (the awesome man who brings me hope daily) called to check on me and make sure if I needed anything he could get it on the way home... all I wanted was another "few hours" with my pillow... I got it! Waking up Saturday I was still a little weak and a lot not so me... but I felt so much better! And as Megan knows I finally did hit an awesome benchmark! So what really happens in the body of someone with MS... Oh yeah... who the heck really knows... but I do know that my body will let me know anytime I have done WAY TOO much and just shut it down... Wish it would just send an email, tweet, or Facebook me! I would read it! Promise :) I'm born to smile and have some fun... not live on a couch!

Friday, April 27, 2012

Keeping cool

Recently I was at the ball field (for those tuning in for the first time I have a daughter [10 years old] that plays softball and a husband that umpires our oldest daughter [17 years old] will be starting up soon) and someone asked me-  how do you keep cool, this is FLORIDA? Okay so that narrowed the question down. They weren't talking "field talk" they were talking temperature. Normally I don't use my blogs to self promote myself, I will share a few things that because you don't know what you don't know. I am a Thirty-one consultant (great company by the way). As I was talking with this mom, I pointed down to my personalized thermal tote. ICE PACKS! Oh yes! Being at a ball field anywhere from 3-8 hours on a Saturday or even a week day in Florida can take the best out of any one. League rules can be harsh for any one. But I have found with the line of Thirty-one products an ice packs, its a great pair for the perfect day! So a market thermal, thermal tote or the making memories thermal... the key is always have THERMALS and ice packs for your outing and you are bound to beat the heat!

Wednesday, April 25, 2012

Exercise... hmm

Living in MS world brings a couple of challenges, the biggest being my weight. Okay so that isn't the biggest, but for me (the chick that thinks of herself as a person with MS for about 5 minutes a day) my weight causes quite the struggle. While most hop into some big exercise program, start running and just sweat out the pounds. Everyone with MS nod and say it with me... I wish! Those that know can all agree heat is the biggest issue. I wondered for years why while others drip sweat in buckets I am lucky if I get a dab on my brow- regulating temperature is just not something I do- that's problem one! Image running and not knowing you are overheating until you already- its called heat stroke! I have been sitting at the ball field its 90 something everyone is sweating, me not so much... and then boom! headache, weakness, light coming towards me... ice pack in hand (carry them with me always) I start my cool down. So I always "fear" exercise programs and trainers. Mainly because they look at me and "think sure I get you fit, first we will get you sweating..." STOP RIGHT THERE! You'll get me in a hospital bed before I am dripping buckets... I have tapes I have all sorts of stuff, and yet never have I dripped buckets... so now I am back into swim suit season... OKAY HERE I GO AGAIN... I live in Florida... we have no real swim suit season... but I am trying to give an image to my urgency... The kids want to go to the beach any moment we have free... and why not it's awesome! So as people flood me with ideas on how to lose my "baby weight" (she 10 and he's 15 almost 16- and YES I totally still blame them- why not?)  please remember there are oh so many things that due to my MS, hand surgeries and other limitations I just simply can't do! I LOVE my sports and I love bike riding... I am going to be right back on that bike :) that's for sure!

Friday, April 20, 2012

Emotions run high

Have you ever started thinking about writing one thing and then moved in another direction? yeah that is kind of stuff going on in my life right now. While I am constantly posting about my MS and the stress that comes with... I often find that there are alot of times when I find so many great things in my life that focusing on survival, Survival- yes, doesn't really seem like something I need to talk about. Mental and physical. My body is going non-stop and my mind sometimes to forgets to remind the rest of me to just chill. But when I get that reminder, its hard and fast! Emotionally, I'm the queen of the world- are you kidding me... read my bio some day when you have time to kill! If I am not doing it, I am it! I just have to find that perfect medium... any ideas?
Well, I do know that I will continue to enjoy the art of peace and beauty... because I do know that photos provide that pleasure... and I totally enjoy it!

Tuesday, April 17, 2012

Holy Hotness

Okay I live in Florida... I get it... its going to be hot... this recent study explained alot

And I had a real good laugh over most of it right up until I read the "hotter months" part... Shoot! Okay umm will someone please tell me which ones those are? Cause we had one day of weather that hit in the 43 degrees wind chill 34 degrees and I thought I might die (seriously). That day (not kidding) I took part in a marathon (bagel anyone?) I felt my feet three days later... it was 75 that day! So then I hear during spring break a cool front my be in store -WHAT? Oh no fear- it's going from 89 to 82... hmmm... these hot months... I'm in March at this point... Here comes April... the A/C at work I don't think ever turned off. The heat did kick on only to let us know it worked, it was on for one morning only to turn off in the afternoon and the A/C kicked right back on! THAT WAS FUNNY! HEAT... I can't tell how many times I sleep with ICE PACKS... Seriously! My head feels like its on fire... so yeah... do I fight the urge to tell these scientist to throw another dart? Yes! This time I do... cause really... how much closer did they come to solving the puzzle with this test?  Ice cream anyone? just hold the cherries!

Monday, April 16, 2012


I am sure happiness is what everyone hopes for in life. In the realm of MS I think the word "happiness" takes on a whole new meaning. I know for myself it has. What once made me "happy" has shifted. Some might argue that has come with age, I would argue it comes with perspective. I am sure most people I went to school with don't wake up wondering if they will be able to see or if today will be the day they can't walk. No, I think it really has nothing to do with age and more about perspective. Sure every morning I get out of bed (score) and see my alarm clock (double score) I know I have started the day off winning the MS battle for that day. And while I MIGHT be super tired and have sore legs or whatever else, I know that the big tell tale signs didn't win- I am happy! I do push the envelop a little farther than I should, but I also know I am racing a clock that has no time on it. It won't give me the date, the month, the year when I do wake up and can't see again- or when I go to move and my leg or legs say "no". Till then I'm happy flying around doing and being a million things to a million people... and hopefully a little bit of an inspiration. Not because I want someone to feel bad, but because I want people to know, this decease STINKS and its scary and lonely- but I am HAPPY cause today, today I am great!

Saturday, April 14, 2012

Taking on too much?

Someone once asked me- "how do you do it?" "Do what?" - I didn't quite understand the question mainly because I really have never looked at life like you have "options". I always look at life like you just do... sure you have options, you can always say "no". But then I am always afraid of what I will miss out on. For instance... being a mom- sure I could have said it wasn't for me- but anyone who knows me knows that Aubri means "ruler of the little people" and since my sisters all grew up and are now taller than me that meant children! Sure they are slowly growing taller too- but they will always be my kids- ha! Well at least in my mind! So work- well sure I could be a stay at home mom- but I tired that... I am NOT good at it! I need work... in some form! So I love my newest venture- Thirty-one! It allows me to spend time with wonderful people and be apart of a great company! Am I taking on too much- not at all! I love my life... and I would LOVE to share it with you! Not to mention- HELLO FREE STUFF! Time away from "life" and meeting great people- sorry- but what's not to love!

Friday, April 13, 2012


Long work days combined with worried nights add to the need for sleep. Sometimes life takes us by surprise. Events, people, and of coarse illness can be so unpredictable that we often find ourselves looking forward to the moments when we are lost in sleep. I often wonder when I see people in a wheelchair, do they dream about walking? Is it rude to ask? I know in some of my dreams I run- I mean really run... not hop along like I have no purpose, but run like I have to be first to finish the marathon. I don't run, for the record. The only running I ever have done was spiriting. I have always loved the sound of the "gun" followed by the quickness of people flying to the finish, only for it to be over with before it really started- yep the sprint. Long runs, that is just boring. Put me on a bike... now we are talking! Love the feel of the air in my face. In Florida it's almost impossible to find the "hills" I had growing up as a child, but that said, the wind is still there. I think when life is at its hardest, that's where I go... my bike, cool air hitting my face, hearing all the sounds around me. Then when I need a rest I see the lake in all its beauty- yes, sometimes you just need to sleep.

Thursday, April 12, 2012

The lighter side

I like to think I laugh through some of the "yucky" parts of life because sometimes that is just easier. Having pain, tummy pain, head aches and then the fear that this is just the beginning I guess comes with the territory. But I for one decided a while back I was "redefining" the territory. I wasn't going to just be a MS person mainly because I don't really know what that means. What does that mean? So often people can't even say what causes the disease and we all know there is no cure. So if we have no idea how to prevent something or cure it,  or what is "it" how do we "act" it... I think that is the big question... While there can never be an "act" about anything... When you tell someone you have cancer, they understand. They may not know what you are feeling, but they understand. When you tell someone you have diabetes they know, you need to watch what you eat and you have other health concerns. But when you say I have MS- so often you get a blank stare- and people have no idea what that actually means, and well... neither do I... well in the sense of how to relate that to someone. Cause while I may be laughing and having a great time one minute an hour later I might feel horrible and just want to sleep. I may want to go for a bike ride (yes seriously) and then come home and sleep for 3 hours. There are days when my legs are killing me (not because I went on a bike ride) and then there are days when I could walk for miles- and do! I guess I just have to think of it this way- I can't really explain it, but I have good days, I have great days, then I have days when getting out of bed was the bed accomplishment. Pounding head... yep their is a lighter side to it all while it sounds odd, I can talk about it all, write about, think about it... I'm here! I'm living! My steps are bigger these days, have a little more meaning, seem to need to reach a little farther... but for me as long as the feet are in cute shoes, the fact that they are steps... it suits me just fine... that's the lighter side!
Don't miss a moment of beauty! 

Wednesday, April 11, 2012

Holy Migraine!

My week is a marathon. I am always aware of that, and I am also aware of the fact that because of that- I'm stupid! Yes seriously! I know that sounds totally harsh, but let's look at this from the perspective of a Doctor writing prescriptions. "Aubri- let's look at your week"- (THIS WEEK)
Monday- work 8-5 (means getting up at 6 daughter to school by 7:20), Daughter's softball game- home at 9 (ish)- bed at 10 (ish).
Tuesday- work (8-5- same story)- Took youngest to the field ("quality time"- yep crazy!) home at 8:30 pm, Bed at 11.
Wednesday- ah HELL! WORK- Let's have fun- SCHOOL 6pm- 10pm (I'm serious)- bed- PLEASE DEAR GOD by 11!
Thursday- CRAP WORK- wonder if my daughter still cares about school? yep! Dang!- Oh yeah- forgot- work time 8:30 PM (YOU FEEL ME)- oh you are probably already asleep at this point! I know I am! Home cause seriously where else am I suppose to go? BED- (after internet "playtime" 10)
Friday- Drop of the kid- Now do I have a meeting? THIS WEEK YES! DANG! THAT MEANS WORK 8-5 MAN!!!! Meeting at 6 till 9 (no rest for the wicked- or something like that)
Saturday- I want to see my HUBBY! That will be at a BALL FIELD! It's FLORIDA- It's HOT!
Sunday- Take one guess!!!

Can ANYONE guess why WEDNESDAY at 10 am I sporting a migraine?

I love my Doctor... and his words ALWAYS crack me up... Aubri... you do remember you have MS right? And you do remember you suffer from Migraines? Do you THINK you could ever just relax? Hmmm ah No! I'll have PLENTY of time for that... someday... for now... I'll take my meds... ON TIME, Drink lots of water, and sleep... when I think I can! HA!

Tuesday, April 10, 2012

Upgrades? Really?

Some of us in the MS worlds are a little tired... I mean that literally... so when we go to our web pages, sites, blogs, etc. and the famous words needed "upgrade" appears I know for myself it can be so frustrating! Especially when training! It's one thing when you teach someone how to do something and they become a "pro" at it, then comes an upgrade. In some cases its "simple" the "browser" just needs to be updated, but sometimes that "simple" upgrade isn't so "simple". First, let's take into account that some people have NO CLUE what those words actually even mean, or even better that hitting "okay" send the person into uncertain panic that they will for sure crash their perfectly fine computer. Then there are the people that have NO control over their computer upgrades. Yes there are people that have to beg and plead for upgrades... funny in this day and age that there are a group of people that control "upgrades"- BUT YES! Because SMART HORRIBLE people have found wonderful ways to harm computers thus planting viruses in upgrades and sending computers straight into crash mode so whole networks fail to operate... yes this is why people are fearful of the simple task of the "upgrade".... SO why on my "MS" blog am I ranting.... when this sort of thing is normally reserved for "Life in Blogging" (yes please join both- I don't just rant there- promise!) I discovered in talking to a fellow MS "chick" (love her) she stopped the Internet (WHAT) because every time she turned around the computer was asking her to "upgrade" something... I shrugged and said that was sad... then I came to blog today about something TOTALLY unrelated in MY MS journey and WOULDN'T you know it!!! MY OWN MS BLOG WAS TELLING ME I HAD TO UPGRADE!!! KARMA I TELL YOU!  So to all those struck in upgrade mode... go ahead- page me... my beeper may actually work... - HA!

Saturday, March 31, 2012

MS Life

Sometimes I think people forget what MS really is and what it can do to a person. Please always pass along when you have someone wonder because its what you don't know that causes unfair judgements.

I am always amazed when I am tired, or sore, or have pain and people look at me like that can't be possible... really? All the prescriptions I take work... yes, but only to a point! And some work because others I take cause issues. Nothing like needing to take something to help me stay awake because on top of MS fatigue, I also take medication for my legs that also causes tiredness! Great! Love it!

I have to watch everything- some medications actually CAUSE headaches- seriously... I suffer from migraines! Why would I ever want to take anything that could cause headaches... yep, that's a day in the life of MS...
So yeah you may not see a person with a cane, walker, or a wheelchair, but that doesn't mean that every step they take isn't painful or forced. Sometimes when you see some one in line at the store taking a little more time than you would like, take a deep breathe and remember... no one wears whats wrong with them on the inside on the outside... many try very hard to always wear a smile and walk that extra mile to be strong!

Tuesday, March 27, 2012

working cause I can

I do work, part of me does it cause I can, part of me it for the obvious reasons. Our family bills started taking care of themselves, oh wait, I'm awake... yeah someday... but until THAT day... I do work, cause I can! I do wish tho that my work sometimes reflected the fact that I am the one doing it.that's more of "life in blogging" but the fact is I have had so many people tell me how "proud, honored, inspired...etc." because they see all that I do... Ha! I think... I'm a "Shauger" I don't know anything else... you want something... you work for it! I want to be "okay", that means staying out of my bed! Yes- I am the new face of MS- get use to it, I'm working, cause I can!
Find a "Kaboom" park build near you!

Thursday, March 22, 2012

Tough road ahead

True I know that I am one of the "lucky" people. I know that currently I am standing tall and doing what most people with MS only dream about- LIVING LARGE! I know that sounds rude, but in the grand scheme of things that's not that far fetched. Most MS "people" post stories of live changes that ultimatily end with... and I am at home now.... Nope... not me! Yes, I had to change careers, something that was NOT easy. BUT in the process I took stock in my life and went back to school. Yes, I was making good money. My children were (and are) well cared for, but being able to SEE is important and never knowing when that ability may go away again is something I could not risk it. So walking away was the only option. That started a new road, new career, new everything.
Looking back, its been filled with a little of everything! Who knew when the Dr said "MS" he was really saying BS, MBA... yes! That is what his diagnosis really meant. I left denistry, went into the "business" world, and with it went back to school. So while I know that I still have a tough road ahead I also know in my heart the toughest days will be YEARS away!
The love of my hubby and kids has driven me to take the roads I am not sure I would have... but I am driven... and will continue down them :)

Monday, March 19, 2012


Sometimes people talking walking for granted. Seriously... we are born unable to walk, we learn and we just do it without thinking about it. When you were 8 did you ever ask your parents- "how do I do this again- I forgot?"  Sure, sometimes accidents happen and require a cast or God forbid surgery with pins or even more serious items to help... but in the end the goal is to always get back to walking. You see people with canes, walkers, and crutches all designed to assist with walking cause its just natural. No one gives much thought to not walking as an option. For those that can't walk wheelchairs become a way of life.
But there some that are stuck.
Some people wake up every morning wondering if today will be the day they climb out of bed and walk around like normal (without thought) or struggle just to get to the bathroom. Each step begins to take on a whole new meaning when you aren't sure if it could be your last. When the step could be full of numbness, soreness, or  pain. The next day a regular day walking and standing tall enjoying every step knowing again then day could be very different!  While yesterday my children took me to the beach to remind me the beauty it held and we walked out there I was a little sore, today my left leg was doing its "MS" thing. I laid in my chair yesterday glad the car was close by, but also glad the sun was so bright and warm. Yeah, yesterday I was walking, today I am suffering! It happens, but I can't stop living and I can't stop moving because when that happens I've let the MS win. I always say I have MS 5 minutes a day, now its 10- the time it takes me to walk up the steps of my bathroom (yes my room is multilevel) and now (the extra 5 minutes) the time I write my blog. The rest of my day... I live my life... cause who has time for any thing else!
Sometimes laying at the beach is just as great as walking it!

Friday, March 16, 2012

3 days strong (Not me)

I am trying to figure out how marathon runners do it. Now that I am 3 days into this migraine I  just want to crawl into a ball and hide. I have been working through it, despite my inner voice telling me to get into a dark room and hide. I slept with an ice pack on my head last night- then I heard the storms! Ah- ha! Pressure changes! Yep feeling it! And it can stop at any time- really!!!

This MAMA needs a BREAK- my kids need me, my hubby needs me, my job needs me, oh and I need me!!! Yep I am needed, which is nice, but with that comes pressure... ah pressure.... is the beach calling, just maybe... gotta get rid of this migraine!
Sometimes you just need a break- the beach fits me!

Wednesday, March 14, 2012

Long days...

Headaches generally have a reason... hunger, tired, just something. Migraines... yeah those are another story! They can come on so fast and make things seem like the world is about to end! Loud noises, bright lights, food, smells- just thinking hurts. You can't schedule a migraine and you can put it off to another day. It can be crippling! The worst part is no matter what, some times you can't crawl into bed, you just have to move on, head to work, head to the meeting, head to the ball field, head to school... yep long days! Those with MS know the cycle. Something (stressor)- reaction (tension)- results (MIGRAINE) or other sort of reminder that sometimes wearing that superwoman cape looks better on other women! Saying "No" won't cause the world to end... so trying it now and then might actually be good for my health...

Monday, March 12, 2012

Medicine Rollercoaster

Nuvigil is great! I mean it, really! For anyone that has fatigue issues- it's worth talking to your Dr. about! BUT (yep there is that BUT) when you miss a day or two for whatever reason your body crashes- and I mean crashes. The slightest things are so tedious  like walking (seriously) that getting out of bed requires a game plan and a strategy (and some serious motivation- cookies work). Joking aside, one thing leads to another and the next thing I know I am making a "pain pill cocktail" to deal with my leg cramps, back spasms, and tightening muscles in my hands... take this for that, that for this- but your can't that that.... ahhhh..... Knock me out and wake me when I'm better- would ya?
So here I am it's midnight... why am I up? NOT because I was laying in bed and realized I hadn't "blogged" in a few days- Nope, I'm WIDE awake because I picked up my prescription and now my body is hopped up like some junkie that just 8 downed redbulls and wants to party! I think you would die if you drank that much... none-the-less I am reminded once again why they tell you DON'T miss your medication... Nuvigil is GREAT and works GREAT but WOW.... tomorrow is going to be TOUGH!

Tuesday, March 6, 2012


Going to sleep tired and waking up tired. Never good! Putting on that happy face because today marks 10 years (birthday) of the last time I knew I would be a "new" mom.
We talked about it when we got together, we each had one from a previous marriage, and he had a son he had just found out about (LONG STORY). So THREE kids already (financially) having a bunch of kids (properly) just wasn't something we wanted to do. Nope we have dreams! Dreams of retirement! That sounds so weird now. But he still talks about it like it will happen, so I have to believe it will. But I am so tired! So the days that I find super hard to drag myself out of bed I remind myself of our vacations. Yes VACATION! He makes a point of not letting too much time go by without whisking me away to somewhere (kids or no kids) and reminding me to REST, and RELAX. The beach does me best, the sun (not my skin- sunscreen all the way), the sand, the cool breeze, and the warmth just have a way of calming away all my angst. I laugh when people ask me about my move.
I LEFT my family? Everyone who KNOWS me knows that I am super close to those crazy girls that party like rock stars while still claim the "mother-of-the-year" awards each year. Yep- those two are awesome chicks- and I miss them tons- Thank God for cellphones, email, and Facebook. Then there's Mom- Ahh- Facebook and email! How else do you share all that is wrong with the world these days? My blogs are great too! Sometimes it's those underlining messages that they pick up on that really are funny... I guess when it comes right down to it, they know me best, even when I'm tired!
Think I hear the waves!

Sunday, March 4, 2012


The weekend is two days... for those with MS know that "rest" is probably the most important part of true treatment. Drugs and therapy are one thing but REST is the single most important piece that really does make the difference. There are times that I have slept an entire weekend only to actually still feel tired. That's right- almost 48 hours of sleep, with a meal or two here or there, but just sleep... and then say, "Hmmm, I could use a nap". Now that is TIRED! During the week I have work, a child's practice schedule, game schedule, classes on Wednesday, late night work on Thursdays, and of course school work. Then come the weekends! Two whole days- 48 hours to fit in everything. To-do lists that often have "other people's" schedules poured in. Saturdays are generally given to those other people, leaving Sundays to me. -Well me and my family. I have often felt bad that I don't jump out of bed early in the morning and head to church. I have attended here and there, and love the church I go to. It is often so hard however to go. Sounds weird, I know. I play it by ear. I have a "no alarm" weekend rule for the days that "others" haven't given me a commitment. My body needs to be my alarm on those two days. There have been times when I woke up at 11 am- I have looked at my husband who is working on something and asked "why did you let me sleep so late?" only to hear him say "seems to me you needed it!" Other times he will be on his way out the door, and hearing him I jump out of bed so as not to miss out, only to feel exhausted much later and wish I had just let him go. So as Sundays come around each week and I know Monday is just around the corner... I have to remind myself... today God RESTED. He created the world in 6 days, then he rested... maybe in my hussle and bussle. I should learn to take time, rest and in that rest think of him... I am pretty sure he wouldn't mind!

Saturday, March 3, 2012

Pain, life, heat

MS makes you think and re-think everything. Am I tired because I just did whatever... or am I tired because I have MS? I hate the fact that everything about my life is a never ending line of questions that always end with- does this have anything to do with my MS? The stupid thing is- it just might... so what does one do... rely on support! Depression, anxiety can totally overtake the mind otherwise... makes you really think and plan things out. The pain in your life- is it caused  by the heat? Or is it caused by something else... ahhh MS... yep behind the scenes...


While I have my "life" blog, this blog is designed to really tackle MS and my life. Day-to-day I live life like everything is perfect, but as anyone who knows anything about MS, my body is like a ticking time bomb just waiting to explode. At any moment the littlest thing turns into a full fledged battle. My hope is to take each little battle one at a time,  win, so I can win the war. It isn't easy, but I have the best thing in the world- love and support from a wonderful man! So welcome, I hope you enjoy, and share with your friends!