Archive for the 'medical' Category

09
Sep
09

repost this on your blogs please?

Got this from Peter Paige, and I am reposting it everywhere I can, would you please do the same? As many people as possible should see this before Obama’s health care speech tomorrow. Thanks!

Watch The Video

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16
Aug
09

Life…

Well, life is just life right now. My pain is pretty bad, it seems to be getting worse. The degenerative problems with my spine are worse and my dr. thinks that something (a disc) is pushing on a nerve root in my lower back. I can’t stand up for more than 5 minutes at a time. It SUCKS. I am having what they call “occipital migraines” you can google it. It’s scary and I am not just having them occasionally, I am having 2 or 3 a DAY. I am calling my doctor in the morning so I can go see him about it. Something isn’t right, I hope we can find out what IS causing me to have them so frequently.

My Idol

My Idol

I do have to say I am on CLOUD NINE interview with my idol Ace Frehley! We seemed to get on well and he was laughing and stuff with me. When he mentioned the tour, I told him he had to come to Kentucky and he said something like “Yes and you need to be backstage”. WOOO HOOOOO! I am also talking to his awesome publicist Kymm and she is sending me the CD when it drops in September. I got to review the CD before the interview, and I listened to the whole thing and I have to say it’s AMAZING. There are a couple of surprise songs on there that I love like, “A little below the angels” and “Change the world”, “gengis khan” was also great. YOU need to pick up Anomaly when it comes out on September 15th. I am also working on getting a few other HUGE celebs in on the show. I can’t say who yet, but keep watching my tweets! 😉

I just want to say to Ace, thank you sooo much for letting me interview, for being so nice and caring. I appreciate it more than you know. Any other interview I have after this one will pale in comparison haha. Ace you are, as you always will be, my idol. YOU are the one who inspired me to play guitar, your music solo and with KISS got me through such a bad childhood…oh hell I just don’t have the words, just THANK YOU!

I’m tired now…..I’m out.

26
Jul
09

what is CML?

I have had a lot of people ask me about CML, it’s kind of hard to describe what it is and what causes it. I have found two videos that explain it more thoroughly than I could…It also explains about the mutation and becoming “immune” to Gleevec (which is what happened to me). Anyhow, watch ’em if you want…and by the way,  they won’t pause on their own so you will have to pause the second one and watch the first one, then ….well yeah you get the picture. I’m out.

Part One:

Vodpod videos no longer available.
Part Two:

Vodpod videos no longer available.

23
Jul
09

no more dramaaaa

I made the drama post private. I can’t stand to look at it haha…I try so hard to be NON drama so when stuff like this happens I get very out of sorts and upset.

I am on my “rest period” now, 4 days on, 3 days off. Prednisone time. Have I said lately that I HATE steroids? The sweats, the jitters, the non-stop hunger, mood swings. Oh yeah it’s such nice stuff. You’d think the hunger would be good for me, since I need to gain weight, but the chemo makes me throw up, it really does suck. I hate the chemo worse, but I have to say as far as medications I have been on Prednisone runs a close second and Reglan a runner up at third hah!

I have to go see my lawyer today. I got my FCE report so we need to get it in to the SSA. The report looks REALLY good in my favor. No work using the upper body at ALL. I also got a call from one of the senators office yesterday and I have to say I am pleasantly surprised at how much they have all kept me informed. I’ve received  numerous letters, but yesterday was the first phone call, it shocked me haha.  They are federal government and honestly after all I have already been through with SSA, I don’t have a lot of faith in the federal government–well the government as a whole. So let’s hope they get something done and restore my faith in them a little bit…

My hands are really hurting right now. I need to stop typing.

I’m out.

19
Jul
09

just some random blathering…

Well, tomorrow I start week 3 of this continous chemotherapy drip. IT SUCKS. I have been through 5 rounds in 10 years and other than the first one they did to prep me for the bone marrow transplant this is THE worst. It makes me hurt ALL over. Even my skin hurts, it’s like the nerves are on edge or something. My clothes hurt to wear, the bedsheets hurt…I HATE it.

As I said in my other post, I shaved my head, I couldn’t watch it  just slowly fall out, it is just too painful. Now I am losing other body hair…I am pretty hairless naturally, no chest hair, back hair, butt cheek hair (haha). But I am losing my arm pit hair, and uhh, other places. I don’t like it. I DO NOT like it.  So what’s next–well my eyebrows and eyelashes…then I will look like a total fuckin’ alien.

My mother saw me the other day and just cried when she saw the bandana on my head. She said, “God baby, you’ve been through so much.”, heh, yeah, what an understandment. I’ve been through TOO much. My body isn’t what it used to be, and every fucking treatment they do on me weakens me more…weakens my body more. AH well, so goes life huh?

I know some of you think I don’t care, but I DO. So don’t give up on me…..I know some of you probably have, *sighs*. OK I can’t go there today, it will just  upset me. I have lost so many friends because of my illness, they either can’t handle it, or if I don’t do what they expect of me, they get upset and leave. It hurts and I can’t do this today. I can’t handle the upset….

Ok I think WordPress has a thing where you can rate my posts, blog, comments, etc. So have at it, just be nice for pete sakes hehe.

I’m out.

15
Jul
09

hair today..gone tomorrow..

Well, I woke up this morning with quite a bit of hair on my pillow *SIGH*. I then went to put it up in a ponytail, ran my fingers through my hair and came back with huge chunks of it.  I can’t slowly watch my hair leave me yet AGAIN, so I went into the bathroom, cut what I could and put it in a bag to give to Locks Of Love then buzz cut it, and shaved it slick. Yeah, I cried the whole time…

I hate cancer, I really hate it. I have puked so much, my eye whites are bloodied, every muscle in my body aches…I am so weak I can barely open a coke can. Cancer takes so much from a person, it’s a horrible disease, and I REALLY wish they would give up the cure for it. I know it’s out there……somewhere.

So yeah, all my long beautiful hair is gone again…and I sit here typing to you bald and wondering when the rest of my body hair is going to fall out.

I’m out.

06
Jul
09

it begins…..again.

cancerSUCKSWell they started my continous chemo drip this morning…I’m already feeling kind of shitty, I hate these awful meds running through my system. I DO NOT want to lose my hair GOD 😦 . I guess I will find out in about 2 weeks, huh?

I will do 4 days of the continous drip, then 3 days off and taking Prednisone. I hate steroids too, they make me VERY emotional, make me want to eat everything in sight. My oldest said they turn me into a bitch HAHAHA. This cycle will go on for 6 weeks. I HOPE it gets everything under control. GOD I have fought this shit for almost 10 years now.

Sometimes I get sick of fighting, but then I look at my wife, my kids, my family and I HAVE to keep trying…if I was alone, no family, I would just let nature take it’s course and finally be free of not only this disease, but my “Dad”. WOW, how nice that would feel, to be disease and pain free…to be rid of the monster in my life (aka–“Dad”). To be healed and have no scars on my body….ah one day. One day we will ALL be perfect again, happy and FREE. That will be wonderful, huh?

I had to go to the grocery store today for my monthly shop. I didn’t even make it halfway through the store and I was so weak I could barely walk. I am stubborn and REALLY don’t want to have to use my wheelchair or one of those motorized carts at the store, but it seems I am going to have to swallow my pride and use ’em, because right now I am in a LOT  of pain and so weak. YUCK, YUCK!!!!!

Ok enough complaining. I am alive, I have my family and I have love, so I AM happy…

I’m out…




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