Sleepy, tummy, sinus, head wave

Okay I realize this is Florida. I understand I am in the greatest, sunniest, nicest place to live year round. I'm in spring break heaven. FOR MOST PEOPLE. But I happen to have a decease that involves of all things HEAT SENSITIVITY! Seriously?!?! Of all the things that could knock me to the ground... but that said- the cold (you know those two-three days) is even worse.

Lately I have been struggling with daily bouts of sinus mess (taking allergy medicine every day seems to be in vain). Only to suffer through increased stomach yuck, and headache nastiness from the rollercoaster of medication I need to take (half of which says "may cause headaches"- seriously?). So at some point I would love NOTHING more than to get off this ride and resume normal life but the wave I'm on wakes me up at night hoping to God I don't get sick on my now shorter trip to the bathroom (no stairs involved anymore). And while I struggle with the light no light, shower no shower at 2 am, my thoughts at some point turn to -gee, I hope all this racket isn't waking up Rich who will be getting up at 4:45 (he finally started getting up later after I begged him to).

Funny how your mind goes through a million thoughts as you try to work through things. No wonder sleep is the last thing I can do... those guys at Duke sure know what they are talking about! My "memory board" needs about 20 hours of sleep to clean house. Too bad my body isn't allowing that!

Ah... well behind the scenes of MS isn't always rosy, but at least its enlightening!

Ice makes it all better-really!

A while ago I finally got my ice vest! No I am NOT complaining. Last year I applied, but missed the cut-off, or didn't qualify, or didn't have the right amount of freckles in the right orbit of the moon... Who knows... All I know is six months after I submitted my application (as in I forgot I even sent it) I received a phone call from a very nice lady, who totally caught me off guard, and let me know they were done for the season (ah it was mid July) and I should try next year. Umm okay, thanks! 

So with Dr.s Rx in hand I did! I sent it out to three different companies based on referrals I was given. Let me just say upfront, I had no hope again (despite a RX-Seriously). So I filled out the forms (some of them were 4-7 pages and turned them in. I do live in Florida. It's hot like 398 days a year... Okay maybe only 376 but you get the idea... No mater that calendar you are looking at chances are a side of   Hot is on it in my forecast. Good times! Oh and don't get me started on humidity. What it does to my hair along would require a whole different blog that has nothing to do with MS... So where were we.. Oh yes, ICE... Not immigration, the cool kind. So my vest arrived in the mail and I was oh so happy. For me it meant a lot, it meant I could go for walks and not overheat. It meant I could be out at events and not go from fine to heat stroke without realizing it before it was too late. Form me it meant freedom to really enjoy life and not worry about the time involved... Or so I thought. The vest is great don't get me wrong, but like all things it has its faults. This model is made up of nine individual ice packs. Good by the fact that you can lessen the weight by not putting all of them in the little areas, bad by the fact that by nature, ice melts. So over time the ice packs have to be replaced. No it's not 30 minutes, but it's not convenient say if you are away from home all day. Where do you keep the replacements frozen? How do you re-freeze the packets you've used? So yeah, on the surface they are awesome, but if you are going to be at an outdoor event, say a Little League tournament and you don't know the place (hey it could happen) then you have to figure out how you are going to spend the whole day outside in the scorching blazing sun and be able to keep your ice packs frozen... Grant it, I do love my Thirty-one thermals (yep that's a plug) and they work excellent for the long haul... But I still have to think of others and pack things for them... 

Well... Ice is ice... I'm just glad that I have options right now and am able to stay cool... Cause it sure makes a difference. 

Blue vest... Walk ready... 

A wish

With all that goes on in the world I would be selfish to list all my wishes or think that somehow mine are more important than someone else's. I know there are many that suffer much worse than me, and I know there are many that have problems like mine, that have no cure, but in their case, death comes sooner.

All that said, I do believe I share a similar wish. My weekends are generally the same- my recovery time, time for me and my body to mend. I do clean during the week, but I deep clean much as I can on the weekends (usually Sunday). Meanwhile my husband wakes up each weekend day around 6:30am to take our daughter to work, heads to the grocery store or some errand, and most times takes care of things around the house (the lawn, projects I've mentioned durning the week), and walks our dogs. During his morning routine, I rest, there are days I hop right out of bed and start cleaning, but most days I rest letting my body tell me when it's ready to emerge. Sometimes I literally just lay awake letting my muscles heal. 

With my latest issues to my right foot causing sporadic pain, rest and pain relievers seem to be my best option.  

My wish: is to lift the burden and be the "jump out of bed EARLY" person for my husband. To truly be his better half the way he is mine. To provide the smile he provides for me all the time. To be able to keep him company and not be in pain in the process. 

I feel robbed by MS, not as a victim, no, from the affects of the pharmacy merry-go-round. Taking medication for this that causes that- so taking medication for that which in turns causes this... And so it goes.  I know with all the other deceases out there a cure would be a huge unthinkable wish, so for now I would be happy with just being able to be a little bit more supportive for my husband, especially for all he does for me.

I know I am truly blessed, that said... I still would have just a little wish. 

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!