Optic Nerve check-ups

Eye appointments are supposed to be a routine part of life. Well add MS and the word routine begins to mean nothing. I celebrated too early today at my appointment today. No changes in my prescription!! It was awesome! Then came the dilation part of my exam. Looking at my optic nerves, not only has my right one gotten worse but now my left one is showing signs of issues.
It was such a blow! I had my MRI on my birthday and I haven't gotten the results and now I don't feel so good about it. My medication seemingly has been working. So this just breaks my heart!!

Allergies, MS- What's next?

Going to the Dr is a pain in the butt for any reason. Add having to list off the names of medications you take (and spell them), it becomes a 3 ring circus. What is that for? I have never heard of that? What is the dose? And my personal favorite- I can't find that in the system, could it be something different? I literally have a piece of paper that has my 7 prescriptions (and 2 as needed) written down. Then I have a drawer of "just in case" meds. Yes, that is truly a life of "Behind the Scenes". Every time something comes I fear the looks, the questions, the judgment. But I have been rather fortunate. Maybe its my attitude. I know shocker- right? I am quick to defer to the Dr anytime they want to recommend something. Case in point, my continued struggles with my chest, cough, sinuses. Going on week 5, following Dr.'s orders my husband woke me up after a night of pretty much no sleep, (at that point I had slept 30 minutes), to go get a chest x-ray. With pneumonia ruled out (thank God) the focus went back to my allergies. I swear, as the years have gone by I have become more and more sensitive to things, foods, pollen, etc. Having been to the allergy doctor and lit up like the 4th of July during testing, I really didn't want to just jump into shots. But after this past several weeks of misery, I'm over it. I just really hope that it will make a difference because I am not going to go through that only to be miserable. Wondering if I should call and just bite the bullet and start now? Or wait my "follow up" appointment at the end of the month and let them know, the meds were a total failure, I ended up at the Minute Clinic twice, and Urgent care once and a total of 7 prescriptions (1 the first visit, 2 the second, and 4 the 3rd) later, I am finally able to go the morning without a box of tissues or need a cough drop (or cough up phlegm- sorry). So while my cough syrup tastes like some sort of butterscotch rum "shot" mixture (glad I didn't go with the codeine one!!) I am glad I can work and not have people look at me as though HAZMAT might need to pay me a visit. -Maybe they should just to be on the safe side. Trust me I have sprayed enough Lysol at work that I am pretty sure I have napalmed every germ from here back to Pinellas. Can't be too careful. I guess my biggest issue is the shots... I was SO happy when I was able to stop taking shots for my MS. With muscle atrophy in my arms and legs, I am NOT looking forward to this. So yeah... For the record- I do NOT want anything NEXT! Well maybe to lost 10 pounds, but only if its healthy, I don't need to lose a 10lbs tumor and have that scare hang over me. Plus, I have enough scars! Unless I get a tummy tuck out of the deal- FORGET IT!! Hope you enjoy the little glances "Behind the scenes of MS" it isn't always pretty, but it's LIVING! And that's most important! Leave a comment, let me know your thoughts, experiences and what you have done to "get through"... Keep on being a warrior!

Stronger-2018

In 2004 my life came crashing down. The words "multiple sclerosis" back then still were such a huge long term unknown in the sense of treatment options and long term care. I saw myself with little to no options available for life...
For about 5 minutes!
It really never dawned on me that MS would ruin my life, just change it. I knew people that had MS and their lives had been... Forever changed. I guess it's easy to say I have always been determined not to be them.
Do I have a secret? Some super medical treatment or medical therapy- Heck no!
I have listened to my Doctors over the years and followed their advice (within reason). I have stuck to taking meds when needed as needed.
And sure, my life isn't roses. I mean its 12:40 am and I am up typing about my MS & reading old blogs to see how things have changed or when things have bothered me the most (to write about them)... But truth is... I am pretty darn lucky!
I'll take it! Leg cramp and sleepy issues and all!
#MSWARRIOR

Head fog

After only getting less than 3 hours of sleep last night (this morning) I ended up having a pretty functional day. Accompanying my husband to the grocery store and got my lunches packed for the week. I started dinner in the slow cooker and then helped my daughter with some much needed guidance.
Then it was time to test my shoulder. Only one way to see how well my workouts have helped... I figured some bonding with my daughter over some archery way the best way to do both!
Problem with full days... Fatigue creeps in quickly and head fog can be painfully real.
It becomes debilitating to the point of just wanting to chill. Doesn't do well for a social life. But laying in a comfy bed, watching tv, and catching up on the news (or newsfeeds) is just what the Dr ordered!
Snuggling in shifts with everyone who stops by (kids & hubby) is an added bonus. Of coarse having a dog that doesn't want to leave your side is even sweeter.
Yep, I'm hoping I get a full nights rest. Cause tomorrow I've got a full day. I don't have time for head fog and I certainly don't have time for MS.
I'm Made Strong...

A tiny nap wouldn't be so bad...

Been a total battle lately. Health-wise I am what you would consider "a picture of good health". My MS is hanging on great! In "MS" circle talk, anyway.... Do we have a circle? Communities, Yes! But actual an circle? I'll continue...
 I have been trying to exercise every day. I set an alarm and say I'll exercise then! Only to hit snooze and tell myself it's a better idea to do it after work, less likely to injure myself! The work day ends and driving myself home seems to be the actual accomplishment. I actually feel relieved I made it into the driveway without adding an insurance claim to the route. Not because I'm a bad driver (reserve all comments- not that I really get any in the blog world- wonder why that is?) Anyway... I make it, and proceed to the house! With the Florida heat it has been tough this year. Seeking A/C shelter and rest is about the quickest move I'm making. AND my shoulder has been this constant source of pain since November but really kicked it into high gear in January. I mean really, are you suppose to be in pain just sleeping? Totally wrong!!! So I have spent much of my time going back and forth to Dr.s and physical therapy trying to get some kind of relief. My favorite statement... " well, you are already taking... (a medication FOR treating [name something associated with my MS] and that's a pretty high dose" Really? No kidding! I take that EVERY DAY because otherwise I wouldn't walked in here. I have taken it in climbing steps now since I was dx in 2004 [10 years mathematicians!]. Do you Mr. Medical genius know what happens to a person after several years of taking something? Yep, that's right! It doesn't work! Heck I took something that straight had me looking at throwing myself straight down a flight of stairs. I totally see how Robin Williams "happened". Very sad! So yeah, today, right now, this very minute, when asked on a form to describe my "health", I'm good. Ask me this afternoon, when my drugs have worn off and I have to drive home, and my daughter wants to do something "sports" related, and my husband thinks dinner should be on the table cause I managed to get home first, and my son needs my time for school (its open house after all), and the dogs are upset cause I am ignoring them, and the iguanas & bearded dragons are pacing because I walked into the room but didn't give the "proper" love the wanted (and they probably need fed too)... sure... I'm good. By neurology measures. No new lesions. But I am exhausted! So what measures should we go by when people ask?

We live in a world where its "weak" to be anything but "ok" or "good". And I am, health-wise. I am very grateful. I just think, there's nothing wrong with wanting a nap!

Resources

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!

$100!

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...

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!

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!

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...