Wednesday, September 30, 2009
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
Genesis.
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" Medterms.com). 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, Medterms.com). 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.
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