Wednesday, September 30, 2009
It's been a blustery week. The wind, the cold, the clouds. Fall is in my bones and if it weren't for Halloween I might be depressed.
My first Neurologist appt since the diagnosis and start of Avonex was on Monday. Caught him up on symptom changes and a blood test says my liver and white blood cells are fine! In another 3 months we'll do the same thing - and if all goes well it'll seem that the Avonex and my body are doing just fine with each other.
It's weird, the word Avonex. 3 months ago I've never heard it and I used it as often as a friend's name or a local hot spot. Oh - what the future can bring!
Besides the Health issues - I'm moving out in probably 2 months, and that is good because I'm 29 and I live with my Mom :). But it was for good reasons and it was a good time and my sister is 15 ad it was fun to live there, but I've got to become somewhat responsible for my own self and I'm giving it another go.
And back to Halloween, my costume is coming along - and I need to focus on perfecting it in the next coupe of weeks. I've got the dress, hat and a wig to use as a base - but it's only in a beginning phase.
Friday, September 25, 2009
Happy Friday Beautiful World. Today I watched a small YouTube clip [see link above] on the Hubble Ultra Deep Field and it blew my mind. There are speckles of galaxies sitting beyond our mind's ability.of conception. The Universe is mind-boggling. It's completely never ending. There's got to be life out there somewhere and I wonder what it looks like. These images in this video awed me, I actually has goosebumps. Moments like this make me wonder what is out there - physically and spiritually. But I must admit, science is a master artist herself and sometimes things simply are what they are.
I injected myself for the fourth time this week and my side effects weer very minimal. 7:30, 2 ibuprofen and shot. 10:30, 2 more ibuprofen, 1:30, 2 more for safe measure. Some tightening and cramping in lower back but it was so light I was barely affected. I think the timing of the medicine helped, I need to keep it in my system consistently until I fall asleep.
I have read and am currently reading such negative stories on MS and Avonex and all things related but my current experiences are not reflecting any of those situations. I can only hope this is my course. I feel for everyone going through pain and anxiety over these issues - but I figure if I hurt/tingle/feel tired... I just let it be. I pray it doesn't get worse and I do what I'd do with any other sickness. I medicate and deal with it. Let us hope my future holds a steady and low profile path for me... and for you.
Thursday, September 10, 2009
Last night was my 2nd avonex shot, 1st alone. No nurse... just me and my anxiety! I had a new plan: wait til later. Take Tylenol PM and sleep through all of the pain. When I got home I took the syringe out and did my normal routine. Took 2 Tylenol PM at 7:30, did the shot at 8:30, felt drowsy at 9:30... woo hoo! Fell asleep - also apparently texted in my sleep as well, Tylenol PM does some business on ya! A friend texted me "How'd it go" and I replied "Took at 8:30, just drank it"... funny. I did fine until I woke up at 1:30am in the same aches and pains as last week. And then again at 3am, and again at 6am. Unfortunately there was no real difference in the side effects and I'll probably have to wait longer to see them subside. Some people had said from their 1st to 2nd shot they felt a difference so I had my hopes up. Eh well. I would like to post a video of me doing it - if I get it down... just to see that it's not that had. It's mind over matter, but that is tough sometimes. Every time I counted to 3 in my head my arm instantly got heavy and I couldn't do it. But for some reason I finally did. No worries though - no pain... just weird! I don't have MS, MS has me! :)
Current Symptoms: tight upper knee, some tightness around waistline when I bend my head forward, tingly fingers still... in the morning it's more the whole hand. Such interesting day to days.
Tuesday, September 8, 2009
Thursday, September 3, 2009
OH man! It is almost 14 hours after my first injection of Avonex. Here's my experience:
A home nurse stops in to do the training. We do a practice run on an orange. When we open the training pack and I see the needle, I cry. It looks thick and long and scary and I hate it. The nurse was great - supportive, talks me down from freaking out. I am not scared of needles, but I've never had to stab myself.
Now it's time for the real deal. We get set up and I'm holding this thing 1/4" from my leg and I do this for about 6 minutes. I keep freaking myself out and can't make myself just shove it in. The nurse is patient but I feel bad for making him wait. I count to 3, about 10 times... and finally in one swift motion I shove the needle down into my thigh muscle. Surprisingly enough I can't feel a thing. This needle is sharp! It goes directly in, smooth and fast and I let go and there it is - a syringe sticking out of my leg. Funny - I was Mia Wallace once for Halloween, had a fake syringe sticking out of my chest - who knew it would become real.
So the next difficult step it pressing the plunger - I'm nervous the medicine is going to hurt. Again I don't feel a thing. I pull it straight out and and glowing like a 3 year old that was just praised by her mom. I am the proudest person in the world. It's ridiculous.
Now for the side effects... we've discussed them all. Flu-like symptoms are the most common, happening in 3 out of 5 patients. But just like MS, these vary in everyone. Anything from feeling like you're about to get a cold to full blown fever/chills/nausea. There are more to worry about and some that don't come about til later: depression, liver/heart problems... things I have to watch and be tested for. As for right now I'm just worried about the flu. I took the shot at 6:30, didn't take any medicine til about 7pm. Typically I'll take something before I do the shot - but the timing just didn't work out. 7:30 comes, 8:30 comes I'm feeling great. Come 9pm I start to feel it. At first my legs just feel tense like I have to stretch but it progressively crawls up my body and intensifies. Before I know it my whole body is aching and I get the chills. Even though it stinks - it's tolerable and after I finally fall asleep it's not so bad. I did wake up about 3-4 times. In the morning the flu-aches are gone but my back hurts so bad, as if it's recouping from the spasming and pain. I take 2 Tylenol and sit in the shower for 20 minutes hot water shooting down. It's 8:21am, I'm at work, and I feel great!
Ideally this was the worst - not knowing what to expect. Also the side effects should subside over a few months and I should become a pro at jabbing myself in the leg. We can only hope!