Monday, December 14, 2009

Mexico Sun, the New MS

4 nights spent in the beautiful and sunny Cabo San Lucas will let you forget about all your worries.

One of my dearest friends married the man of her life on the beach, in the sun, what a fairy tale. She looked like a princess and I was most honored to be there.

There was beer, tequila, love and lust in the air. All was welcome.

Any problems you ask? I was photographing for the bride and I was heartbreakingly nervous about it. In bed the night before, at 1:30am, trying to come down form the socializing only mere minutes before my mind raced around and around going over what I had to do and cover. In my head I was unable to stop the thinking and focus. Instantly I had some tingly and numbness in my legs and arm. But it wasn't typical. All I could think was that I was stressing myself into a flare-up. I think I read about that - and hardly thought it was something that could happen instantly but I figured the whole stress was building for awhile.

I did not fall asleep until 4ish... after I thought that there may have been an allergic reaction occurring. The blanket at the hotel was very weird and strangely enough I was able to fall asleep and the sensations went away. I suppose only time will tell though.

The wedding day I was up early and able to perform. After pictures I was able to suck them back and have an amazing time with my best of friends while making new friends for the night and ended everything on the dance floor. July 5th I thought I'd never wear heels again nevermind dance my ass off in them. With a hot boy at that. Wedding Cabo San Lucas a success. Thank you Krista for falling in love.


Thursday, November 19, 2009


What is it exactly that I have surging through my body at this very moment? 21 hours after my shot I can feel the side effects... tight and achy back, heavy neck, and I'm sooooo tired. This is every Thursday. Typically I combat this with a Thursday Wine Night which is better than 30 Tylenol! Until the next morning when I need 30 Tylenol to help combat the 2 bottles of wine. Never ending battle I tell you!

So what do I have running through my tissue that is supposed to help me fight off MS and it's potentially debilitating work on my body? Interferon Beta 1a. Well, WTF is that?

Interferons are proteins that are found naturally in the body. They are part of the immune system and normally help your body respond to infection. There are three types of natural interferons in the body: alpha, beta and gamma. The use of interferon for medical treatment became available when techniques were developed for producing large quantities of them.

Interferon alpha is used in the treatment of some cancers, but has no effect on multiple sclerosis. Interferon gamma was also found to have no beneficial effect on multiple sclerosis. However, interferon beta has shown effectiveness as a multiple sclerosis treatment.

The active ingredient in AVONEX is a type of interferon called interferon beta-1a. Only Interferon beta-1a therapies (AVONEX and Rebif®) are indicated to reduce the number of flare-ups (relapses) and slow the accumulation of physical disability. Interferon beta-1b (Betaseron®) is only indicated for decreasing the number of flare-ups. The difference between interferon beta 1a and interferon beta 1b is in how they are made.

While the exact method by which interferon beta 1a achieves its beneficial effects in multiple sclerosis remains unknown, some researchers believe it may reduce inflammation. Studies looking at how interferon beta behaves in the lab suggest it may stop harmful cells from entering the brain. This theory has not been tested in people.

Oh, is that it?

Well it makes sense. They technology to replicate proteins that I make - that help my immune system... it all makes sense. But the mystery of it all - the actual reasons why it all works - and in some and not always in the same way... boggles my brain. When I try to think about it my mind might as well melt out of my ears.

I want to know more... why do I have these side effects. IF the protein overload too much for my body? Are some being rejected? Am I actually feeling the liquid move through my body? How is it is stays in me for 1 week? I'm being quite inquisitive today I must admit.

Wednesday, November 18, 2009

Just one of them days...

Good News! This week my spirits are up and I think it's another one of Mother Nature's tricks up her sleeve that got me not the MS. That dirty bitch. Tonight is shot night and I'm already nervous - but I definitely have slowed the insertion down a bit. Makes me feel more in control, less opportunity for shaky mishaps. Oh and no symptoms, not even the warm thigh sensation... which was kinda nice... like my own Ben Gay or Icy Hot machine. Oh well.

Tuesday, November 10, 2009


Mood is down - is it the drugs? How can one even tell in comparison to life? On a typical day pre-August 3rd my mood was hit or miss depending... but the past few weeks have been in the head turmoil. Nothing uncontrollable, and I'm very aware of it. And with what is going on, and considering its all happening at once, stress must be it. But one must always be cautious that the drugs are interfering. One must always be cautious of stress itself in a situation like mine. No need to bring on a flare-up because of mind over matter.

Forced smiles are smiles all the same.

Monday, November 9, 2009


A new sensation today, a small spot of tingling on the back of my neck. But the legs sensations have dropped dramatically. In fact I hadn't noticed them for a few weeks til maybe a day or so ago- but they've been gone again since.

Life is harder than MS. Can I get a shot to control everything else? Shoot! We're only as strong as our weakest moment - so you've always got to be on guard.

In the next month I will move out, go to Mexico, and be forced to burn all my PTO at work so I don't have to take a furlough. Pluses and minuses all over the board, more that will go unspoken. Take the average and figure it out from there. Tomorrow is always going to come and yesterday means nothing in the moment.

Thursday, October 29, 2009

Learn something new everyday

In the past 24 hours I learned a bit about myself.

I learned that I am lazy. Ok&lt I lie, I already knew that. I learned that my mind can control me. Last night I sat with a needle 1/4" away from my leg while growing sweaty and shaking and anxious for 30 minutes... I only ended up jabbing myself accidentally, changing needles, waiting more, putting the cap back on, having an emotional break down, taking a Xanax and then finally able to shove a needle into my leg. Today I realized that my head could control me no matter how I thought I could talk myself into anything. What else does that involve? Does that mean my head controls other things on its own? Does that mean in the world of relationships/friendships I may have nothing to say? Does that mean if it works or doesn't has nothing to do with the "conscious me"... is this fate/destiny? I realized today, if not previously, that no matter how or what I think or say... I'll never go for what I want but that my new condition pulls me back even more. And that no matter how much of a failure or shy person I am on my own that in the back of my head there is the additional "but wait!" thought that pops up. And also no matter how big a person I want to be - I don't have to be her.

I never go for it.
I never go after "what if?"
I never will know...
On more than one occasion

This is not the MS.
Don't be me.

Thursday, October 15, 2009


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.

Wednesday, October 14, 2009

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.

Tuesday, October 6, 2009

Injection, Oral Not?

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?

Monday, October 5, 2009

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.

Wednesday, September 30, 2009

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.

Friday, September 25, 2009

4th Avonex Shot

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

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.

Tuesday, September 8, 2009

Funny Vid

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

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

Thursday, September 3, 2009

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!

Monday, August 31, 2009

Its Avonex Time!

It's a bright and beautiful Monday morning and Fall is on its way. It was in the air this weekend and the warm nights are definitely gone. Seems like this is a good thing for many MSers. I haven't fallen into the Heat Pit trap yet though. Apparently many victims of MS cannot process heat correctly and higher temperatures are very uncomfortable. I've been reading about people that purchase Cooling Vests, and Bamboo clothing... does this vent easier? I have no clue. So I can possibly expect hot flashes before my rightful time? Ugh.

My Avonex arrived on Friday. Today I'm scheduling my nurse appt to be taught how to jab myself in my leg once a week. Ohh the excitement. I am anxious. I have been looking at the packaging in my fridge all weekend - useless since its in lightproof packaging - but I keep giving it a go.

Current Symptoms: Still numbness in my fingers. My body is almost back to normal - some light numbness - but not uncomfortable. Wore heels for the first time since June on Saturday night. Did well until I had a few beers... could then tell my "swagger" was off. Sad!

Wednesday, August 26, 2009

Tuesday, August 25, 2009

Montell Williams

In continued research in online text and videos I came across Montel Williams' visit to Oprah. To hear and understand how everyone's symptoms are different - creates both fear and hope. Montel's symptoms are constant pain, which beside becoming unable to walk, is my most feared symptom. His honesty and tears pour freely, and of course dramatically.

Check it out:

Saturday, August 22, 2009


This is my introduction to a life with MS. From the beginning - with no preconceived notions, expectations, or knowledge. Post one: from initial suggestions of the disease to the official diagnosis.

My life is pretty candid and open. I am both forward and outspoken and I'm unsure as to why I would want to hide anything from anyone even understanding the possible consequences. Some would say I always offer TMI... but I've got one very short life to live. I was diagnosed 19 days ago. Here's what I have so far:

In Fall of '08 I started having Lhermitte's Sign ("Sudden transient electric-like shocks extending down the spine triggered by flexing the head forward. Due to a disorder such as compression of the cervical spine (the portion of the spinal cord within the neck" My sensations started one day driving home when I bent my head forward the tips of both my feet would tingle as if they were asleep. This sensation happened exactly as I bent my head and disappeared so quickly after. After a few days I was nervous, as anyone would be - but didn't have many fears going in to see my doctor. She was the first one to use the name "Multiple Sclerosis" - and that set the fear in my bones.

She tested my reflexes and strengths, all of which were good. As Lhermitte's Sign is a sign for many things. But to be safe I went to a Neurologist who did the same things she did and recommended MRIs. After 3 MRIs showing no lesions and my symptoms becoming less frequent the Neurologist had only asked that if something else came up that I come back to see him.

Summer of 2009. My left leg goes numb. Not completely, only the skin. And its not numb like your leg falls asleep. The sensations are just very low except to cold in which they are hypersensitive too. I have no clue what is going on. Shaving my legs is super weird, I can't feel a thing grazing against my skin. Drying with a towel - even weirder. My initial reaction is a pinched nerve and I go to a chiropractor who says that can be many things wrong, even something neurological, but he will check me out. After my first adjustment many of the sensations come back but I am still very sensitive to cold.

July 2nd, 2009. After returning home from a concert with my Mom and Sister my knees ached and my legs were heavy. Thinking that I was simply tired I gave it no second thought. The next day I attended a friend's 3rd of July party. It was on her rooftop deck and the stairs seemed more difficult than ever before. Every time I had to use the bathroom I dreaded coming back up. After the party on my way back to where I was staying some friends bumped into me and I decided to go out for a drink. At bar-close we were walking back and I could significantly feel the weakness in my legs. Standing still was difficult, I wrote it off to the drinking but I had only 3 beers. That night as I lay in bed my legs felt 100 pounds a piece. It was such a strong feeling. I tried lifting each leg on its own and could not tell if i was half asleep, drunk, or unable to life my own legs.

July 4th, 2009. This is the day I know something is significantly not ok. I got up and ready to go to another concert that evening. My walking was clumsy. I could not figure it out. My friend came to pick me up, we walked to the shuttle and I noticed that nothing felt wrong but my legs weren't reacting 100%. I didn't think about it again until later that night standing for the concert. I couldn't. My legs quivered beneath me. I wavered like a flag at sea fighting the water and winds. Instantly I became embarrassed, scared, and angry.

Now my next doctor's appointment is with my Physician. She does all the in office tests she can with my reflexes, strength, balance. All seems ok except for my leg which is definitely weak. She suggests another MRI and a visit to the neurologist. In this time the numbness of my left leg is subsiding but my walking is very "drunken". I have a heavy drop in my leg, walking in a straight line is pretty much impossible. This is all very fun for my 5 block walk to and from my car for work. I can't run if I had to, so I've every caution crossing streets and being aware of my surroundings. Nothing is more scary than imagining something coming after you, be it car/person/animal and not being able to even get a fair shot at running away.

The neurologist suggests 3 more MRIs to cover Brain to lower back. Despite that my walking is becoming more normal, or I am covering it up better he says, he is thinking Multiple Sclerosis. My initial reaction is tears.

August 3rd, 2009. After my second MRI my neurologist calls me and tells me there are lesions on my brain and spine, the last MRIs are unnecessary, call him to come in and talk. So there it is, I am diagnosed is less than 40 days of my most severe exacerbation. With that, I am grateful. Some people go years without really knowing for sure what is wrong. There are always suggestions to one disease or another, but without the lesions showing up on the MRI there are other tests I could have been through, AKA Spinal Tap - which made me cry at every thought.

Where I stand now? I am in the process of being approved by my insurance to start taking Avonex (This medication is used to treat multiple sclerosis (MS). Interferon is not a cure for MS, but it may help to decrease the number of attacks of weakness and slow the progression of the disease, It, and all current medications for MS are given through an injection, self-served mind you. So now I am trying to wrap my mind around the fact that I will be stabbing myself once a week with a 1.25" needle into my thigh and giving myself flu-like symptoms (for awhile, anyhow). This is supposed to be a great medication for those that are newly diagnosed. Can help reduce lesion sizes and help prevent flare-ups. Though it has its own problems: may not work for me, depression is a somewhat common side-effect. But it can slow down the disabling progress of MS, and this is key. So I'm going to "man up".

What I hope to provide through this blog is an understanding of a young and newly diagnosed MS patient. I am 28, live in a big Midwest city, had no problems before the Lhermitte's Sign in Fall '08. Otherwise I'm very healthy.

This disease is different for everyone and though there is a general prognosis - the daily outcome can be very mild to very severe. Everything I've read online seems to be the worst, but everyone I've talked to in person has provided me with very optimistic ideas. Finding out the path I will take will only come with time, but my intentions are to be honest - in fear and accomplishment.

Current symptoms, unmedicated: Walking if completely fine, though I am unsure of my capabilities in heels. Sad. My 2 middle fingertips on my left hand are numb. The left side of my chest, from above to below breast has minimal sensation - though it is getting better. On occasion I feel my cognitive skills drop - use of wrong words or loss or word. But that is not significant or permanent. I have occasionally had the Lhermitte's Sign sensations in my upper thighs as well.

Current fears: Love and relationships. This disease holds my future in its hands. I instantly feel guilty for being interested in anyone for their sake. Who would ever ask a stranger if they are willing to take care of them when they are at their worst? "Hi, nice to meet you, I might be in a wheelchair in 7 years - want to take me out for dinner?" Knowing that I have a disease but not knowing what my future holds makes me vulnerable to heartbreak even more for I feel I'm breaking my own heart by forcing myself to feel guilty and feel I am not worthy. The realism is that true love will finds its way - but I'm figuring out if that even exists. There are other topics as well, interest and energy. Relationships need all of this and MS can provide you with a lack of both.

My intentions from here on out are simply to give thoughts, experiences and found materials on MS. From new symptoms, to an embarrassing fall, to laughing about it all. Another path from another MSer to read and compare their story too.