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

Travel

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!

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!

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?

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!!!

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!

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!