Wow.

The medicine I take for MS costs $24,000 - $30,000 a year.

And I'm scared to lose my job to cover my credit card bills.

It's not like I didn't know, my doctor told me right away. The nurse that trained me on my shots told me if I drop any of the sterile items... I just dropped $650.

Blown away.

Emotions Run Wild!

Another Wednesday night, they feel like they are only 2 days apart form each other nowadays.

Tonight's Avonex night, of course. Last week went... weird. I could go quick and smooth with the injection and it hurt a bit. I think it made me nervous for this week. It was like the first week all over. Tension, hesitation, fear... It took me a ton of deep breaths to prepare. And when I finally did it... didn't feel it! Awesome. But it was emotional and it was a overwhelming feeling of frustrations again. They seem to come and go... sometimes I have no fears or cares and sometimes I feel helpless.

I had a few tears after the shot. I am sure it's normal, but you still have to worry about the depression side effect. Its hard to watch over yourself, but I know what I'm looking for at least.

Injection, Oral Not?

http://www.nationalmssociety.org/research/index.aspx

So after my initial home training on the Avonex injection my nurse was very adamant on pushing the fact that you have to be proactive in learning the most you can about your own situation. And I agree. He promoted going online, finding local chapters of the NMSS, talking with my doctor, getting 2nd opinions and all that. At this point I am trying to keep up to date online with the articles offered and listening to people vent via the NMSS' page on facebook.

It's good to hear the bad with the good. You never want to take what you have for granted, but you never want to be pulled into a downward spiral of sad either, especially when your medicine's potential side effect is depression! ;)

As I've been reading lately there are more drugs being tested for MS treatment than ever before - and a few of these being Oral medications! This seems so exciting, even after tomorrow only being my 5th shot of Avonex - who couldn't get excited? But then I started thinking about it and more fears sat in. True - they're going through trials and being tested for approval... but what does that really mean in the short-term. It's still so scary. Medications and their side effects - as I've just recently learned - can take quite a toll on your body. At this point I'm unsure if I'd be willing to test something so new just to get out of stabbing myself with a needle every week. It's going to be a hard call - one I thought would have been simple to answer 6 short weeks ago.

What would you do?

<3

Life Lessons to Follow - Happy Monday

1. Life isn't fair, but it's still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone.
4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.
5. Pay off your credit cards every month.
6. You don't have to win every argument. Agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. It's OK to get angry with God. He can take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won't screw up the present.
12. It's OK to let your children see you cry.13. Don't compare your life to others. You have no idea what their journey is all about.14. If a relationship has to be a secret, you shouldn't be in it.
15. Everything can change in the blink of an eye. But don't worry; God never blinks.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn't useful, beautiful or joyful.
18. Whatever doesn't kill you really does make you stronger.
19. It's never too late to have a happy childhood. But the second one is up to you and no one else.
20. When it comes to going after what you love in life, don't take no for an answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.
22. Over prepare, then go with the flow.
23. Be eccentric now. Don't wait for old age to wear purple.
24. No one is in charge of your happiness but you.
25. Frame every so-called disaster with these words ''In five years, will this matter?".
26. Always choose life.
27. Forgive everyone everything.
28. What other people think of you is none of your business.
29. Time heals almost everything. Give time, time.
30. However good or bad a situation is, it will change.
31. Don't take yourself so seriously.. No one else does.
32. Believe in miracles.
33. God loves you because of who God is, not because of anything you did or didn't do.
34. Don't audit life. Show up and make the most of it now.
35. Growing old beats the alternative -- dying young.
36. Your children get only one childhood.37. All that truly matters in the end is that you loved.38. Get outside every day. Miracles are waiting everywhere.
39. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.
40. Envy is a waste of time. You already have all you need.
41. The best is yet to come.
42. No matter how you feel, get up, dress up and show up.
43. Yield.
44. Life isn't tied with a bow, but it's still a gift.

IF we can't laugh at ourselves - what's life worth anyways?

The Leaves are Changing - and thats not the only thing!

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.

4th Avonex Shot

The Most Beautiful Sight

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.

2nd Avonex Shot

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.

Funny Vid

People get to try on the "MS Costume" and experience balance/numbness/sight issues.

http://www.youtube.com/watch?v=6oraM8IF2Gc

time moves forward... there's no reason to dwell. and laughs can make it better.

1st Avonex Shot!

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!