Time in a Bottle

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

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

munecashechasdepapel.blogspot.com

Lectured by my Doctor- Whatever!

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

Florida weather

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

Island Grand, St. Petersburg Fl, Sunset

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

Rain, Rain Go away!- Sort of

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

Love my beaches, and I love my Tradewinds!

My Beach

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

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

Cold, Flu, MS?

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

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

Blah...

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