OK It Has Been Rough, ARG!

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OK, I keep trying to come back online and return to life, I pop my head back in the door, then for one reason or another I take off again. It seems I just can not get my head on strait… I have been depressed… Mourning perhaps… Mourning the loss of my health… The loss of control of my life, of everything… I have just been negative lately but I think I maybe have a hold of it now. Trying to start the week off with a better attitude! I even cut my hair! Fresh start! Again!

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I have new things in my life that I should be happy about. I have a new bedroom, bathroom, space to myself, and as mentioned before (I think) I now have SSI (income) which is not much but it is so much more than nothing! Nice that I can swipe my card again! Yes I would rather have a job of my own but I also want a Corvette… Got to be happy with what I have, got to appreciate all the little victories. Things are turning around I suppose but it will just take time to really get my life going again. Multiple Sclerosis has really messed me up this year and we are only halfway through it…

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You know what I have not done in for ever? Share my symptoms and medication… So here I go…

Symptoms:

Spastisity (legs) – Just stiff enough to make walking difficult. This has been the case for months and months but I have been too distracted by my other symptoms to identify that it is an issue…
Balance
MS Hug – Not to bad right now…
Numbness/Pins and Needles in hands – Getting used to it.
Minor Vertigo – Was way bad before, now I really only feel it when I tilt my head too much or move around too fast…
Major Cognitive Impairment – Man I thought it was bad before but now I know what real cog-fog is…
Occasional Ringing in the Ears
Vision Loss – Has been in and out, a few weeks ago I was near blind, now I am not even wearing my glasses…
Itching on Head
Slurred Speech – Has not been too, too, bad but I hate this so much.
Muscle Twitching – Pretty much only at night.
Random Pain – Everywhere
Extreme Fatigue – Has been OK lately, well, under control at least.
L’hermites Sign – Here and there…
Trouble Sleeping
Depression?
Hard Time Hearing
Skin Sensitivity to Cold

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Medication
Rebif
Gabapentin
Citalopram
Norco (As Needed)

Calcium
Vitamin D
Vitamin B12
Lecethin
Glucosamine
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I have cut out most pharmaceuticals and am trying to stick with supplements and soon diet, AGAIN, kind of, I will explain that later… I also bought a new A/C unit for my room so I can stay cool since heat is the enemy for most people with MS. I take cold showers and sit with an icepack on my neck when I need it. Trying to get some exercise back in the loop… It will all take some time and this is definitely all not anywhere near enough… I want to try a few new medications like Ampyra (Dalfampridine) once I do more research because I am so sick of the whole not being able to walk well thing… I see the neuro in August… So we will see…
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I have also been trying to start a fundraiser to raise money for a stem cell treatment but the timing was bad when I first started it. My mother will be taking over the management of the fundraiser. Will have more on that as the information comes. The widget on the right side of my blog under my photo has more info, OH! Almost forgot! The stem cells come from ME and donated umbilical cords so nothing controversial here! Anyways the procedure is done in Panama and I know someone who has received several transplants and she is doing so well!
Oh did I mention? I got behind the wheel of a car! Ba-Boom!
OK It was weird because I have not driven since January but there was a while that I was honestly starting to think I may never drive again. Sure I am in the middle of nowhere and I only drove down a strip of road for 60 seconds but I learned a lot, most importantly, I am pretty sure I will be driving soon. Guess I will have to start saving for that Tacoma after all? So I think that will give me the burst of motivation I need to be positive again, it felt good!
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12 thoughts on “OK It Has Been Rough, ARG!

  • July 9, 2012 at 3:45 pm
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    matt you sound like me the stiffness makes it hard to walk .either a foot brace a Ampyra (Dalfampridine) im going to try the only thing is the side effects scare me you can get worse and i dont want to do that i can live with what i have .i go back to the doctor in aug too. when i read your stuff i feel a lot a depression in you .i know you have ms but you are thinking about the things you cant do but should be thanking god for what you can do even if its slower or takes you more time to do .im going to try the tonic water again it work before so i know it will work again for me .and stop thinking on the pills you take if they help you its ok to take as long as you dont abuse them .always love the pictures you take .take care love ya april

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  • July 9, 2012 at 3:54 pm
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    Thanks, the depression comes and goes always has since my teens… I feel fine though haha… I still have to do research cuz I only want to get better… I think I can find a way to beat this without a pill, everyone want a quick fix and that often causes more problems than in solves… Time will tell :^b

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  • July 9, 2012 at 6:29 pm
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    I am just wondering, have they ever tested you for hyothyreoses and hyperthereoses. It is more common among MS people than the rest of the population. I don`t know much about the hyper version, but think it`s easy to find out. Hypo, you have to get an extended blood test. Ask for the resault and make someone else interpret them. If your body temerature before you get out of bed in the mornings are below 37 degrees Celsius then that is a sign of hypothyreoses. It`s just an idea, because if you have a hypo/hyper problem many of your symptoms could improve by treating it. MS is actuly one of very many hypo-symptoms.

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  • July 9, 2012 at 7:03 pm
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    ALWAYS THINKING ABOUT YOU MATT AND PRAYING YOU WILL SEE MORE IMPROVEMENTS SOON.

    DEPRESSION CAN BE SO HARD TO IDENTIFY SINCE, WITH ME TOO, IT COMES AND GOES, CAN'T REALLY DESCRIBE IT, IT CHANGES SOMETIMES FROM VERY MILD, TO MODERATE AND I DONT LIKE THE FEELING AT ALL.

    THE COGNITIVE PART HAS CHANGED ME INTO LIVING LIFE DIFFERENTLY THAN I WOULD IF I WAS HEALTHY. SOMETIMES I FEEL SAFE AND COMFORTABLE IN MY OWN HOME, BUT REALIZING AND KNOWING HOW MUCH FUN THERE IS TO BE HAD AND HOW MANY AMAZING THINGS I CAN BE DOING AND EXPERIENCING OUT THERE IN THE WORLD. BUT….HERE I AM AT HOME TODAY, BY MYSELF, WORK ON SOME SMALL PROJECTS AND I'LL BE FINE WITH THAT. I JUST DON'T REALLY UNDERSTAND WHY I'D RATHER BE ALONE, THAN REACHING OUT TO FRIENDS AND THE ODD EVENT THAT GOES ON. I USED TO JOIN IN ON THINGS ALL THE TIME, BUT SOMEHOW, NOW I DON'T AND I HAVE TO PUSH MYSELF. MAYBE GOING OUT AND BEING WITH PEOPLE IS HARD, BECAUSE OF BRAIN FATIGUE … I DON'T REALLY KNOW. MAYBE JUST THINKING TOO MUCH CAN TIRE ME OUT. HA HA HA (HARD NOT TO THINK…RIGHT?) LOVE YOUR ROOM, PLANTS,PICS, ETC

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  • July 9, 2012 at 7:11 pm
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    hyothyreoses and hyperthereoses? Nope, never…

    Its hard but you really do have to push to get out, its like jumping into a cold pool, hard to get yourself to do it at first but after you jump its not so bad! Then it warms up! But yes, very hard without MS, I hate going out because of the MS… Its getting better but YES, it is hard as heck….

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  • July 9, 2012 at 9:58 pm
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    No hypo/hyper test….Then my friend, maybe you should?
    You could start by temperature check 6-7 mornings before you get out of bed.

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  • July 9, 2012 at 10:13 pm
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    Matt, I am so happy to see you blogging again. We've missed you! I'm glad you're all moved in and enjoying your own space and privacy now. Your pill organizer looks like mine, but mine are all supplements. I think I've found a pretty good combination that works for me. It is trial and error and lots of research and as usual what works for one won't work for another. Fatigue is my absolute worst issue and I haven't had to take any Provigil in almost two months!

    Awesome that you got behind the wheel again. I truly need to do that myself. With the heat, my vision and just general MS BS, I haven't driven in well over a year, though I keep my driver's license current. You mentioned Tacoma…as in Tacoma 4×4 Pickup? OMG, my first two vehicles were 4×4 Tacomas and oh, how I miss them! I took my drivers test in my pickup truck and the police woman just grinned when she saw what I would be driving. I will always be a 4×4 pickup truck girl – always. 🙂

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  • July 9, 2012 at 11:01 pm
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    Haha I just got to keep the writing up, did you get yours at Target lol? And yes, that is the truck I have always wanted…. One day I hope! I hope that winter treat me well! jhgdfjsghglkgfsadfhghjihuiykugmj!!!!!!!!!!!!!

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  • July 10, 2012 at 12:03 am
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    Today i called a guy ive known for years by the wrong name. i got mad at him cuz he wouldnt answer me… he sez "i didnt answer cuz thats not my name dumbass". i couldnt remember his name again, till he told me… (gulp). If you want to stay cool there are water cooled vests, neck wrap, hats etc. they last for hours & work well even in extreme heat. sleekcartim

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  • July 10, 2012 at 2:01 am
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    Im too busy freaking out to be redfaced, at least at first. isnt the goal to keep brain cool? i remember seeing cooling clothes that you simply soak in cold water that last for hours & are reasonably priced (considering what they do for you). sleekcartim

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  • July 10, 2012 at 2:22 am
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    I need the good stuff, I have tried the neck things like that and it was craaaaaap…. So might as well go for the best now

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