Monday, July 23, 2012

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Writing freely is becoming harder and harder each day, or so it feels... My memory loss is just so bad, I am loosing track of each second in my life. What happened yesterday? This morning? An hour ago? 5 minutes ago? I do not know and it's so frustrating. I can sit down and spend a few minutes trying to recollect something that should just pop into my mind in a few seconds but that stresses me out and is not always worth it. The other day I could not remember my cats name. I sat down and stared at her for ever, just thinking, thinking, thinking. What was this cats name? Why can I not remember it?? I finally did, Willow, but I wanted to just break down in tears because I was so frustrated with myself. I am 22 and have a memory worse than most grandparents. I wish I could properly explain my frustration.

I need to try that lumocity thing but I keep forgetting (haha) and now that I remember I am out of money... Should get paid soon... I see my neurologist on the 15th and will bring this issue up. I have not looked into it much but I am sure they can give me Adderall or something which I bet would help with fatigue as well. From what I hear students all over the USA are popping that stuff like candy so if I can't get some to try I'll be pretty mad...

Speaking of pills, after a full week, I finally got some Baclofen for my legs... The tightness is gone in my right leg, the tightness that was causing all the pain, so now I have been trying to loosen up my legs to see if I can walk. I can... Which is depressing me... You see, this medication makes me unbelievably tired... I can be walking around after 4 cups of coffee (which I have not had in 2 years) and still be falling asleep as I am walking. So I am depressed because before I was living unknowing if I could walk properly again. I felt that I could but did not know for sure so it was all up to my imagination  which of course painted a pretty nice picture. Thanks to Baclofen I know that I can physically walk when my legs are not tight but the problem is, in order to loosen them up I get so tired that... I can not really walk... It's a loose loose situation. I am interested in trying Ampyra...

Anyways, I have been reading again. It's hard but I am getting better at it and I no longer need my glasses to read. Just hard to follow the lines so I guide myself with my bookmark. Reading "Abraham Lincoln Vampire Hunter" right now because one of my nurses insisted that I did and so far I am liking it. I am liking that I am reading again but it is really making me want to start working on my novel again! I need to re-write the whole thing for so many different reasons but I am not ready for something of that magnitude so I will just be patient... So yeah, I try to read before bed now... Keyword: Try.

Oh yeah, so the other night I slept without the noise of the TV for the first time this year since my first hospital stay in... February? I have always needed some kind of noise to fall asleep and in the hospital they gave me a TV so that kind of became a huge crutch considering I used to be fine with a fan. After I came home I moved a TV in my room and now I can't sleep without it. The other night I aimed to put an end to that so I put some classical music on and took my "sleepy meds" and I slept well... I suppose. But that lasted one night... I guess watching some TV before bed helps me escape for a bit... -SIGH- I hate TV but the Science Channel and the History Channel are OK...

Let's see... Had some family over on Saturday, felt rather sick yesterday, and today? Well so far so good but I'll knock on wood just to be safe... Would like my SSI check already so I can get some printer ink and start working on a personal journal about my life since I am loosing, if not lost, the ability to remember it if I did not write it down. Would also like to get some healthy food to juice and a few other things. Then I will donate some to my fundraiser. I REALLY hope I can get some more donations and spread the word some more! One step at a time, I have to constantly tell myself that, one step at a time.

17 comments:

  1. the adderall makes a huge difference for me in the memory department, as well as the fatigue area. even when taking baclofen i have enough energy to get through the day... albeit, i'm tired but not fatigued...

    if they won't give you adderall, ask about provigil... i'm hearing that many docs are not so keen on prescribing adderall but are okay with provigil... go figure

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  2. ugh..... of course, I want what I want though......

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  3. Hi Matt, I would just like to tell you that your videos have been very informative. I have a 20 year old son that has had many problems through the years that really seem to be leading towards a MS diagnosis. I didn't really know about MS until about 3 weeks ago when he went to physical therapy for pain in his back and a weak ankle. The doctor was doing the usual checking reflexes etc. When he hit his knee with his little reflex hammer thing he said that he should probably go back to his neurologist because he has something called hyperreflexia. Also ordered an afo brace for his ankle.
    When I went online to see what type of brace that was I kept seeing MS was mentioned a lot. I looked up symptoms of it and it describes a lot of what my son has dealt with. One of the symptoms that surprised me was the heat making people feel so drained. I will be honest. He has said since he was about 10 years old that he can't hardly function when he is outside if it is hot at all. But, I thought he was just not wanting to be outside with his little sister on the trampoline. So I would tell him he should go out at least for a while. He would be there about 15 minutes and we would see him laying on the trampoline letting her jump around him. I never realized the sun was his kryptonite!!! lol Sorry to just ramble on. There are many other things that have caused him to be placed on disability but they seem to be very similar and I will be asking his Neurologist about this. I wanted to let you know your videos have been very understandable and helpful.
    Thank you and good luck with everything. God Bless and have a great day, Judy

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  4. Hi Matt,

    Thank you for sharing your journey, brings awarenss to those that do not understand. I too have MS. I wanted to share something that has been amazing in my life in hopes it may work for you as I also had a laundry list of meds that seemed to make me feel worse. I have been taking Gilenya and this past July 6th I celebrated 2 years wheelchair free :)

    This drug hasn't rid me of MS but I haven't felt this good in over 10 years! Many times I get stopped by people who haven't seen me in a while to tell me how great I look, I think because they are shocked to see me up and moving so freely(I do have some permanent damage to my right side, but am still able to be on my own two feet).

    It took a few months before I noticed any significant improvement but if my family were to be interviewed they would tell you this is a miracle drug. My sons no longer worry about me and can focus on schoolwork, etc. I'm happy it gave them back their lives too.

    May God bless you.
    Jan

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  5. Judy - Did your son get diagnosed? Krptonite, never thought to use that adjective, stealing it, hope you do not mind haha... It just... works...

    Jan- I was going to try that a while back but opted not to for what ever reason, I can not remember why... Glad it is treating you well. I am currently taking Rebif and so far so good, I think... As you may have seen, I am going to be trying to get a stem cell treatment, vid on that coming soon!

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  6. Not yet he has an appointment with his new Neurologist on the 8th. I will let you borrow the kryptonite. But you have to spell it right. lol I had to look up the spelling myself. I swear the heat outside really does affect him a lot. He avoids the heat like the plague. Something else that we have noticed in the past (probably not related to this) When he had to go to physical therapy to regain full use of his left arm a few years ago we noticed that after he did the workout and he would lay on the bed for his massage for his spin or for whatever he would fall asleep right off. He said he always gets the drained effect that he gets in the heat. I would like to list everything we have had happen over the years but I don't want to take up your time you may start charging me by the hour. Well, I did let you borrow the kyptonite so maybe I could pick your brain a little bit sometime. :)

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  7. I was showing Chris (my son) a couple of parts of your videos and he said you explain how he feels in many ways.

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  8. Yes I am fighting the drained feeling right now... It is horrible... Hope you get GOOD news on the 8th... You can always hit me up about it!

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  9. When the little voice inside of you says you can not paint, then paint. That will silence the little voice. Van Gogh. (not an accurate quote but close)

    this is how I try to live my life. sometimes it's a successful way to cope, sometimes things are very difficult. that is living, each of us has our own experience.

    I am trying to touch base with your blog regularly. Yeah I have the damn thing too. For every small accomplishment, recognize it and give it a nod.

    Marble mouth, that's me for sure...

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  10. I have wrote a long message twice now and my computer won't let me save my messages. If you have an email I can send my message to, I can save my messages to drafts as I type so I can come back to it and don't have to stay in one place for a long time. I have arthritis and spine problems and can't sit long. My email is jdystratton@yahoo.com if you have an email you don't care if I send a message to just send me an email. If not that's fine too.

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  11. I will give you an example of the way you explain this in a helpful way. I read your blog to my son and you talking about forgetting Willow's name made him laugh. He said that is exactly how it is for him too.

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  12. At 1 he started waking up crying and having trouble with his Achille's tendon.He had pain in his hands/fingers. (My dad has Rheumatoid arthritis).They sent him to
    aquatic therapy,labs,etc.Other than positive ANA and some other things but no real big red flags.They say he has some type of muscle/skeletal disorder.And don't want to diagnosis that will stick with him for his whole life.His records mention possible SEA,SLE,in big letters.And protein in urine.1 specialist said I'll be lucky if he isn't in a wheelchair by 21.Awful thing to say.At times he gets stuck bent over.At 2 he was picking up acorns got stuck he just held his hand on his lower back and kept going.We felt bad for him but it was cute looked like a tiny old man walking around bent over.At times he can't get out of bed. He wont get books from the bottom shelf he gets stuck sometimes.In 7th grade he hurt in the chairs because of his spine.Eventually he had to have a teacher come to our house for the rest of that year.His neck stuck tilted,elbow stuck bent,gone to hosp because for a day and 1/2 right arm just hung there useless.Couldn't lift it or squeeze with his hand.Doc said pinched nerve in his neck maybe.At 15 he had a headache,pain in his eye,left side of his face went numb,left arm went limp.He still had weakness in his arm he went to physical therapy. They did an mri and other tests. He said some type of migraine maybe.He wasn't sure.He asked who in our family has Narcolepsy?They tested and he has Narcolepsy.He goes into a deep sleep in 1-5 minutes.Can't stay in Rem sleep.Hip shifts out of place goes to pt for that.Had to get a special boot for his ankle because it's unstable.legally blind without glasses.Eyes get worse every year they drastically change his glasses.Gets pain in his eye.Has cane for when his legs feel weak and a little unsteady.At 16 went to new dr,he had his cane for weakness in 1 leg.That stupid dr told him he uses a cane because he thinks he looks cool! That he didn't need a cane/brace.The problem he saw was weak muscles, hyper mobility, and fybromyalgia.Just ignore the pain.He was so beaten down when we left there. Grrr some doctors.Now he has an adult neurologist.Now he's having weakness in his ankle PT says get a mri he has hyperreflexia,unstable ankle,and a couple of issues.Gave us an afo brace and said he needs to wear it until this gets fixed. When I look online for what an afo brace was MS and drop foot keep coming up so when I started checking on ms I stumble across an intelligent young man who was describing a lot of symptoms my son has dealt with. So,I decided to bother that young man and pick his brain a little bit and fill his blog with my rambling. Oh wait I almost forgot.Saturday Chris had to lay down after he came back from a class he is taking. This heat is rough but he insisted on walking since it's close to his dorm. I don't know if that had anything to do with it. When he woke up He had a lot of pain in his chest. He thought it took tums,didn't help,threw up a little, paced around here trying different positions because he said sometimes he can get that feeling to stop.I said why haven't you told me you get chest pains.I happened to be at his dorm for the weekend or I would probably still not know.So after an hour and 1/2 I convinced him he should get checked. Turns out it wasn't his heart it was spasms in the chest wall and esophagus. He now has another medicine to add to his collection.Has to get an upper GI.

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  13. Judy,

    Check out www.msconnection.org to look at other people. You can join it and blog, and will get answers from others who have experienced these things.

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  14. Sorry, I was not feeling well yesterday, my email is Mattalleng@yahoo.com

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  15. Anonymous,

    Thank you. I will check that out.

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  16. Matt,

    I'm sorry to hear you weren't feeling well. I hope you are better today.

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  17. Yeah idk what it is, been nauseous... But feel free to email me, I don't do well with reading but I will just take my time haha.....

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