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.
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/faqs-about-ms/index.aspx

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!

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!

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 :)

Walking

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!

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!

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...

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!

Tired

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!

Sundays

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!

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...

Welcome!

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!