I have hit the three month mark on Avonex. Not that three months has any sort of significance, other than the fact that I'm calling it an "anniversary." It's like the first year of a relationship where every month is an anniversary. Okay, maybe only I am that lame. Anyway it's nice to have finally hit a point where I'm no longer waking up on Monday mornings with dread, wasting time worrying about how the shot will go. The last two weeks have been my most smooth needle work yet. Even with doing the powder form, which requires me to mix up my drugz before I inject them, I'm generally done within about four minutes. I have been fortunate enough to not have dealt with severe side effects, and the small things I do feel are easily avoided or dealt with by alternating Tylenol and Aleve. Avonex has also helped me become much better at guzzling water and staying super hydrated, I'm crossing my fingers this isn't the only benefit this drug will have for me.

It's obviously no secret that I have some reservations about being on Avonex. There are times where I feel like a huge sucker, and am slightly grossed out that I am contributing to the money mongering pharmaceutical industry. The general stats for Avonex also leave much to be desired, in my humble opinion. I once read someone compare taking one of the MS drugs to buying a Cadillac, and asking if you would really buy one that only worked 30% of the time. Although I can't argue with this logic, I'm obviously behind the wheel. I'm just hoping the car doesn't go "Christine" on my ass. Either way, this is where I'm at right now. I am giving it a fair shot, no pun intended. I will continue Avonex for all of these reasons: I have mastered the art of the jab, it isn't making me ill, I have insurance and an insanely cheap co-pay, it makes my family happy to know that I'm doing what I can, and there's a chance of a chance that this could keep me from relapsing in the near future.

Part of what compelled me to again touch on my use of Avonex was the recent release of the "Champs" study, ten year follow up stats. The average relapse rate of patients on Avonex was once every four years, and that aint bad. I could continue to get analytical here and say the same could be said if you weren't on therapy, but I think that's a given. Drugs or no drugs, if I could go four years without a relapse, I would be pleased as effing punch. 

Five Stages Of Grief
1.Denial and Isolation.
At first, we tend to deny the loss has taken place, and may withdraw from our usual social contacts. This stage may last a few moments, or longer.
2. Anger.
The grieving person may then be furious at the person who inflicted the hurt (even if she's dead), or at the world, for letting it happen. He may be angry with himself for letting the event take place, even if, realistically, nothing could have stopped it.
3. Bargaining.
Now the grieving person may make bargains with God, asking, "If I do this, will you take away the loss?"
4. Depression.
The person feels numb, although anger and sadness may remain underneath.
5. Acceptance.
This is when the anger, sadness and mourning have tapered off. The person simply accepts the reality of the loss.

In a recent post that I made, there was a mention in the comments about the 5 stages of grief. Which is one of those things that I've heard about but sorta just yea, yea, yea-ed and didn't really consider. I'm not sure if I've ever really looked into this model until now and I gotta tell you, I'm not sure that I buy it. I do think that it nails down some of the major aspects of grief but to put them into clear cut steps like this, I think is a crock. I'm not sure if I'll ever reach true acceptance, because Idon't understand what my future will hold.

I think this step might work for a death, or divorce, or job loss or something, but for our disease I do not think this model works. Hell, I might run through that whole list in one day. I think that if I were to follow this list I would be eternally stuck on #1. I have a big problem with denial...not denial of the MS, but if what it restricts me from doing...or remembering...or thinking. And I also think that no matter what kind of "support system" we have, we will always feel some sense of isolation. It is incredibly isolating to be feeling something that literally no one else can understand. I go through stages related to this model all the time, but to say that the anger, sadness, and mourning will taper off is not something I can accept. I do not think I'll ever stop being upset in someway about this. I can accept that I have it, but for me that doesn't mean I will not feel those other things.

I think that acceptance of a disease has an entirely different process that never ends. I was just talking to Dana about this and how I think its common after your first year of diagnosis to think you've accepted this disease. You think you're ok with it, and life will go on. But then shortly after, something clicks in your brain and you realize you haven't accepted it. I think that the path to acceptance is long and curved and it has breaks in it. I think the path to acceptance of a disease like MS is more like a labyrinth. You can try all you want, but you may never find the end.

You may have years where you're totally ok, physically mentally and then all of a sudden something happens and you are put right back to the beginning. The sadness, isolation, anger can rear their ugly heads again and THAT IS OK. I know I'm only 2.5 years in, and for the most part..I'm ok. But sometimes, some days I feel all 5 steps within 1 day or a few hours. It can be overwhelming and depressing, but remember a lot of people do this. Its so hard to accept something that has no clear cut guidelines. Remember that this shit is hard. Its not fun. And it can be down right painful sometimes, but this is life. If it wasn't this, it would be something else and the only choice we have is to live through it. You take it step by step, minute by minute, and relapse by relapse. Its ok to never stop being mad that this happened to you, but its not ok to let that hinder your life.

Shortly after diagnosis, I found out about the MS walk. Being that I have so much time on my hands these days, I got all excited about having a project to work on. Fundraising being that project. So I made up some sweet flyers and sent them out to family and friends, and ended up raising almost three hundred. I probably could have worked a little harder to raise more, but I was a-okay with the total donation. Upon over-thinking the whole deal, I became sort of irritated with myself that I got all gung-ho on this thing so shortly after my diagnosis. It sort of became more of a reason to talk to people about my MS, which was irritating on a few different levels. I go back and forth between feeling okay with sharing it with people, and then kicking myself in the head for having said anything. I'm not talking with family and friends, but people who aren't part of my everyday. Either way, what's done is done, and I know the only one who is over analyzing this is me. Narcissism to the extreme. 

Anyway, I found myself somewhat nervous/irritated at having to be at this event today. This last week has been one of the more difficult for me in recent times, in terms of my emotions. I seriously feel for people who are bi-polar, because this is how I've felt. I have made an ass of myself with friends, I have cried at work, I have been a total jerk to my boyfriend, I have just been an all around nutter. I am seeing a light at the end of the tunnel here however, and honestly I feel like the walk today has sorta helped me start peeping my head out of this blanket of funk. 

So once I got to the event site, I was immediately relieved to see that there were plenty of people there. It wasn't as if I had to join some drum circle or god forbid, introduce myself to people. It was totally laid back. I turned in my cash envelope, got my sweet ass shirt, and picked up a hot pink squishy brain courtesy of the Providence Brain Institute, which is where I go now. Woo! My mom, sister, niece and two of my awesome friends were there to walk with me. I saw a girl who was probably about my age, whose boyfriend was wheeling her around. Based on my awesome ability to "know" how cool someone is upon first glimpse (not really) she seemed super cool. She had sweet shoes on, what can I say? Anyhow, I was thinking that if I wasn't so anti-social and all around awkward these days, I would have tried to strike up a conversation with her. I had this fleeting daydream about having a friend here who I could get together and bitch with about MS, since I feel like I'm maxed out on bitch time with everyone else. Anyway.

So when we kicked off the actual walk, "Eye of the Tiger" was playing, which was great. I had a flashback of Andy singing this last month when I had my injection shit fit. It's the all time number one song to try and get one pumped up for just about anything. My sister has this hilarious dance that she does for this song, and I tried to get her to do it, but she refused. So the 5k wasn't terribly long, and we sort of had to cut in line a bit because the slow pace was driving me a little batty. We were done in just over a half hour, and I found myself almost wishing we weren't done just yet. Overall though it was perfect, short and sweet. I got in and got that shit done, and I'm glad I did. I was worried that I jumped into the Walk MS water a little too soon, but I don't think I did. I had fun and I definitely don't think I have any qualms about doing it again next year. I am excited to have one walk under my belt, and to know a little more what to expect next year. 

Today is a monumental day in the life of this blog. Today we have received our first complaint...rather I have received my first complaint. And to be clear, I am not posting this to make fun or be a raging bitch on the person who left the comment. But rather because I'm here to tell the truth...from all sides. I thought long and hard about not responding to this comment publicly, however, I ultimately deemed it necessary.

Here is the comment:
I do have a COMMENT on this entry. I've been in a foul mood ever since I've read it. I'm angry I guess because I see YOUR anger. Freedom of speech gives you the right to be a cynic and spew your anger on others. The same freedom gives me a right to comment about it, well that and YOU as a web mistress, I suppose. You've made me not want to help young people like you any longer. I give up. Be a cynic. I just hope you're on a good MS drug. And I hope you stay on it. Reality is, you have MS. Check. Second, you're progressing. Check. You have to slow the progression of your disease. Being a cynic and being angry about it and posting this stuff isn't encouraging anyone, in my opinion. It's defeating. It's discouraging. It's deflating. It's wrong. It's anti-MS. Talk to me when you see a black hole on your MRI because you wanted to run a cool website and send out a newsletter that made you look all that. What. Ever. Yeah, so what if you didn't jump into therapy ASAP! I did get therapy right away--within a month of my DX--within six months of having any symptoms at all. My MRIs have been very, very good over the past nine years. No black holes, no additional lesions, very little progression, if at all. I'm very lucky but I still suffer, a lot at times. You don't know. The younger you're DX'd with MS typically, the more you're in for in the long run. I was DX'd when I was 40. You have no idea... None. Keep being a cynic. You'll look back at this in 10, 20 years, when you're all grown up and wonder why you didn't get on Avonex or Rebif or whatnot back in 2009. Girl, you have no idea. I'm so sorry for you. And I'm really pissed that I care.

As much as I would love to be all NU UH, PRETENDING TO BE AN OPTIMIST IS STUUUUPPIIIDD. I'm going to attempt to be a big kid about this one. Heres what I think, first of all I am thrilled in a positive way that you do care enough to even write your comment. Most times when things piss people off, they often avoid it, turn a blind eye and never return. So while I see that my pessimist has totally ticked you off, I do hope that you continue to frequent the blog, as between my pessimism and "defeating and discouraging" talk, we have some good information every now and again.

To begin there are a shit ton of other "young people like me" who totally agree with the things that I have to say and many others who think it and are afraid to say it. The reality is those sayings to a younger, hip, intelligent crowd are belittling. I do not believe that those saying will help anyone do anything. If a person wants to be a positive person, and rise above this disease, a stupid glittery banner with "I am the face of MS" on it, is not going to be the thing that keeps them from going over the edge. I find zero inspiration in those sayings. While I'll admit I am a pessimist, I think more so I am a realist. A saying will not change the world...a MOVEMENT however will. Those sayings are not raising awareness, they're not changing anything. They just sit there...and fake shimmer across my screen.

Lets touch on your "reality check"  Yes I have MS. I, however, would not say that I am progressing. As I have stated before I am NOT on medication, and I don't intend to be. I have also had recent MRIs that show zero new lesions, and in fact those that I had are smaller. So I'm pretty sure that's the opposite of progression. Next, if my goals is to slow the progression of the disease, maybe for me, that includes getting out negative energy which involves writing about stupid MS related things. I may not take the typical medicinal methods to deal with my disease, but without any attacks in 2 years and a reversal of damage, I'm pretty sure whatever I'm doing is working. Not to say I don't have daily problems, but damn it that's nothing new.

I also did not post this website to encourage people. That is not my job. I am here to tell it how it is. No bull shit. No lies. There are a shit ton of other websites out there that lay on the optimism to no end. That's not what I'm here to do, and that's not me. If no one reads this website, that's fine with me, because it helps me. However, there are many actually who are reading it, responding to it, and agreeing with it.

Explain to me this "Anti-MS" comment? Yes you're right, everything I am doing IS anti-MS. I in fact hate that I have MS, so pardon me for not throwing a party with unicorns and balloons. If I were Pro-MS, I would think that would raise a bigger flag then the things I say. I am also, Anti-Cancer, Anti-AIDS, Anti-Diabetes...etc.

I don't understand how my running a "cool website" (thanks for the indirect compliment) will cause me to have lesions on my brain. I suppose you're referring to my negative energy, but again I'd rather put that on the interwebz than keep it all bottled up inside. And I did start on therapy right away, actually. I was on Betaseron within 2 months of my diagnosis, but after more research on my own and my own personal experience I decided it wasn't for me.

I may not be standing with you everyday, but for you tell me "you don't know" is a little silly. I do live with this too, just because you're older and have been riding the MS choo choo longer than I have doesn't mean I don't get it. Thats a little presumptuous, wouldn't you say? I also urge you to not feel sorry for me. I will not live with regret on my choices to stay off the meds, as that was not something I took lightly. You are right, you have been fortunate. You had 40 years before MS became a thorn in your life. Imagine if you had been in your twenties, imagine how that might have changed your thoughts, your views, your goals, your future. As you accuse me of having no idea, I think perhaps considering what this does to you mentally and emotionally in the prime of your life is something you have no idea about.

p.s. Thanks for telling me that my newsletter made me look  "all that". Best. Compliment. Ever.