Thursday, November 25, 2010

Its Been a Helluva Month

So, its been a while. Theres been a shit-ton of stuff going on. My kids gma (my ex's mom) was pronounced terminal so I spent my med money to get them down there to say goodbyes and for the funeral. That experience in and of itself was a major mind screw. Not to mention Ive been without meds so major mood swings, lots of pain.

Have an MRI scheduled for December to check if there are any new lesions. If so, then neuro will put me on a different CRAB med (Im on Copaxone now). I hope that doesnt happen. the side effects of the others scare me.

Thanksgiving went amazingly well..despite no money we managed to throw together a decent meal and had all the kids here...and it was all done in time for hubby to eat with us before he had to work. (happy face)

So although noone really listening thought I would update.

Sunday, October 17, 2010

Free or Low Cost Auction Site

Pretty cool site--all kinds of stuff to bid on..some with free shipping.  The "currency" of the site is credits which you get some on sign-up and more for other small things to do.  This is one of those "small things" is to post a link and I get credits for everyone who signs up through my link.  So yea, worth a look anyways.

Auctions for free stuff at

Tuesday, October 5, 2010

So I warned ya I might not write regularly

Well, here I am sitting at my computer wondering how my life got this way.  I never would have expected it even 5 years ago.  I used to pride myself on doing work that people didnt think I could.  Now it nearly "couches" me for a couple days when I walk a few blocks.  So I have been on Copaxone for a few months now.  My husband seems to think it is working wonders for me, but hes the one that would take the placebo and report back about how remarkable it worked.  I have bumps, knots, scars, scabs and bruises everywhere.  I hat thinking of taking something that might maybe possibly make this crap progress slower.  Yea, I guess I am at the anger stage of all this.  I have to decide whether to pay for my medical or pay bills/get groceries.  And it is because of MS.  It is such a central thing in our lives and it pisses me off.  I have to limit things, and it affects my family more than I like to admit.  I wish I could go back to when I didnt know I had it.  Things seemed simpler then.

Monday, September 20, 2010

Living with an "invisible" Illness (the pebble)

“You’re not alone. I have a pebble, too.” The Invisible Illness Experience

rock heart “You’re not alone. I have a pebble, too.” The Invisible Illness Experience
People would be surprised to know. . .

That on the days when you ask what I have done today and I reply glibly with “Oh, a little gardening, a little reading, a little knitting…” and you think how spoiled she is, how lazy… What I am not telling you is that those days are the ones filled with pain to the point where I cannot stand to move, to stand, to sit, or even to lie down. I go out in the garden and let the touch of the plants be a sort of meditation, grounding me to my surroundings and reminding me that I am but a tiny piece of the glory that is our universe. I read as an escape from my current reality of agony, and as a distraction, and as a pleasure in the midst of pain.

And when that escape is no longer working, I knit, to keep my hands from clawing at the ants buzzing around under my skin, and to keep my mind busy enough with knit three purl two that it won’t get lost in negativity.
I think people would also be surprised to know that pain doesn’t have to be an excruciating pain to have a profound effect on your life. If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger.
But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.
“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?
When I see someone struggling with a pebble, I want to hug them and say “You’re not alone; I have a pebble, too.”
It won’t make their pain any less. But it will make it less frightening. Less lonely. Hopefully they will begin to see all the things they can do in spite of their pain, rather than all the things they have had to give up against their will. Hopefully they will see that, in spite of the pebble, they can still be the kind of person they want to be. That, even with a pebble, life is still good.
–Andrea at Kids by Hand

Friday, August 27, 2010

Life and other things that get in the way of sleep

So started on Copaxone shot about 2 weeks ago.  Really having a hrad time with wanting to take this one.  No immediate benefit.  Just a med that MAY help prevent new lesions and POSSIBLY lessen number of exacerbations.  Thats alot of ifs and maybes.  I have happened upon quite a few different instances where people have MS and were relatively OK for about 20 years then it started hitting them hard.  When these people started getting hit hard, they were in their 40s.  I wonder if the more destructive side of MS likes to show up around that age or after that many years. 
This concerns me because I am 38.  I just got my dx because of incompetent doctors and moving to a different state.  So will my slam come after 20 yrs of dx or around 40 if there really is one?
I am having more of a hard time with this than I figured.  I thought after I got the dx I would be relieved.  Now it seems I am just worried.  I stopped looking for more info...too much out there to read and it may or may not be applicable to me in some degree at sometime in the future.
Maybe, I can just pretend nothing is wrong and go back to work and help my family out more.
Maybe I would be able to pull this off for a few weeks, months, or years before my body slammed me back into reality.
Hey, I can have dreams cant I?

Saturday, August 14, 2010

Belly Day

So Wednesday I started on Copaxone.  It is an immunomodulating (changes the immune system) drug used to try and slow down new lesions and flareups of Multiple Sclerosis.  I was kinda nervous at the thought of giving myself a shot everyday.  I have an autoject (contraption that holds the needle and injects it when u push the button).  You have to rotate injection sites because this medication has a notorious side effect of injection site reactions and deterioration of tissue at injection sites.  So today was belly day.  I was especially nervous about this.  But it was the easiest site so far in a way.....I have enough padding (fat) there so it didnt sting as bad as the other ones.  But being the only flexible spot it is a little wierd feeling now.  So yea I know most of this blog has been medical shit.  It is the biggest thing happening right now.  Oh and I want a tattoo so bad it is driving me crazy.  I shoulda been born rich.

Thursday, August 12, 2010

Side Effects

So, I do not take medicine lightly.  I research things, look up side effects and benefits, weight them against the efficacy of the medicine.  So I was happy when my MS specialist/neurologist decided to put me on Copaxone.  So I get insurance straightened out (no small task, let me tell you), I finally get my meds.  The injection training nurse comes yesterday and I get my first shot.  About 3 hours later, I start getting sharp stomach pains (similar to when I had an allergic reaction to morphine but not as bad) and felt nauseous.  A couple hours after that, I threw up.  Not sure yet if it was a reaction to the medicine or not.  Guess I will see if I do the same thing tonight.
But what pisses me off is that the med insert I got yesterday was different from the information I had already gotten (online, from the Company site, and med insert with Welcome pack from the company itself).  This one lists more side effects--like lowered immune system response, nausea, vomiting, hypersensitive immune system, and higher rate of host infections. Also, the only real benefit was in times between relapses.
Still it was the safest of four evils (Copaxone, Rebif, Avonex, and Betaseron).  We'll see how it goes.