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. 

Warning: Really bad metaphor to follow. Control your vomit reflexes please.

So I had something happen to me last night that changed my views on things a bit. In order to help talk about this in the vaguest terms possible I'm going to use a giant lame-o metaphor. Its gonna be exciting.

I often talk about cards. What ones we get dealt, and when to play them, and as it turns out I'm a so-so poker player but I'm not really one to be giving advice about poker. But we all get dealt a hand in life. Some of the cards are shitty. We have MS cards, which we'll call a pair of 2s because that makes for a stupid poker hand...but at least its a pair. Its a constant, its something to count on in one way or another. Well lets say you're playing 5 card poker and you get a bunch of other off suit cards that don't help you do anything. Its a shitty hand, and that shitty hand will dictate the way you play your game in life. And I have been pissed about the hand that I got dealt for a long time.

And even when I drew 3 new cards I always expected shitty ones because that's what I was used to having. Deuces and a bunch of other shitty cards, no matter who was dealing. So here I am stuck with this shitty hand bound to lose.

BUT...last night something happened. Someone told me something, that I never considered. What if...a new game starts. What if periodically we get dealt a new hand? Maybe we will always have a pair of 2s but the other cards could all change. Maybe I get dealt 3 Aces after that. Just because you got bad cards before, doesn't always mean you will continue to do so.

And I don't understand why I never got this before, and why making lemonade out of lemons never crossed my mind. Sometimes we need to really start over, press the reset. We know we have MS, maybethat's our one guarantee. But nothing else is guaranteed to do well... or to fail. Not everything will suck because you had to fold your first poker hand at life. Maybe you need to fold your cards, think of it as a necessary loss, and get new freakin' cards. There are a ton of other winning hands available with a pair of twos, that maybe you're missing out on because you're not ready to fold. I gotta tell you...I learned. Fold the bad cards. Stop bluffing your way through things. Let go of the bad cards...Get a new hand.

And if you know nothing about cards...here's the cliffsnotes: Hate, Anger, and fear are all baggage. Let it go before you risk losing something worth keeping. Just because things have been bad for you 4 out of 5 times...that still leaves 1. It doesn't mean everything will always be bad.

Hey...I never claimed to know it all, (or be any good at metaphors), and maybe some of you out there already got this advice and took it before. But until someone broke it down for me, I couldn't see how to move on from the past.

Not only am I getting new cards...I'm buying a whole new effing deck. One of the nice ones, that are all slippery and have holes in the center and have a nice wooden engraved case with my name on it.

I'm actually a little ashamed to admit that before MS became a factor in my life, I didn't pay much mind to stem cell research. All I really knew about the subject was that Christopher Reeves was an advocate, and it was a controversial issue for the pro-lifers. Now that I have a disease which could very well one day benefit from this research, and perhaps in some ways already is, I want to know more. Bear in mind that I am coming at this issue from a blank slate, and the questions I am attempting to answer for myself are pretty basic. Hopefully not all of you are as dim on the subject as I, and if you have any corrections for me, by all means. If any of this stuff is new to you, then I encourage you to take this as a starting point and further it with more detailed research of your own.

What are stem cells? What do they do? Why are they so important?
Stem cells can be seen as a kind of building block in the world of cells. What makes stem cells so interesting is that they are an undifferentiated type of cell, meaning they are essentially a blank page. They are able to divide and make copies of themselves, often times becoming a "specialized" cell such as a brain cell or a red blood cell for example. Another good way to look at stem cells is as a sort of healer, since it is through them that things like the gut and bone marrow are able to be replenished with appropriate specialized cells following damage or wear and tear, due to disease or injury.

 Embryonic and adult stem cells are the two main types of stem cells. While both types of stem cells are of course undifferentiated, generally when adult stem cells are divided they can only become a specialized cell which belongs to the tissue or organ from which it originated. Embryonic stem cells on the other hand, are known as pluripotent, meaning they can and do become all cell types in the human body. Scientists are divided on whether or not adult stem cells can be used to create a specialized cell for any tissue or organ from which it did not originate. This is one of the many research questions that scientists are working to answer.

So obviously we'd all be screwed without a kiss if it weren't for stem cells. It is the stem cells found in the embryo which work to create us, and our specialized cells that then birth our most vital organs. They are not only a sort of foundation, but also a huge part of renewal and regeneration.  

What are the pros and cons for both embryonic and adult stem cells?

On the plus side of embryonic stem cells is the fact that they are pluripotent, and have pretty much boundless potential to make any other sort of cell we may need. They are also immortal in the sense that one cell line can provide an endless amount of cell lines with specialized characteristics. They are also available in fairly large quantities from fertilization clinics, being that many fertilized eggs are never even implanted into the uterus and thus donated for research. Some of the cons for embryonic stem cells is that they are capable of forming tumors or promoting the formation of tumors. Also, accepting stem cells from a random embryo donor carries with it the risk of rejection. I for one suck at rejection, but it generally doesn't keep me from trying.

 And now onto the adult stem cells. The cons include the fact that they aren't as easy to obtain in large numbers, they don't live nearly as long in research cultures, and are much less flexible than their embryonic counterpart in their ability to become specialized. On the pro side of things, adult stem cells do not carry with them the risk of rejection, because if we are receiving this sort of therapy, it would be coming from our own personal stock. Recent research has also found that adult type stem cells from both bone marrow as well umbilical chords have been found to have more flexibility than those found in other adult tissues/organs, and could be capable of differentiating into cells that aren't native to their tissue of origin. 

On a related "pros and cons" sort of note, neurons are pretty important business for those of us with MS, being that we are forever in battle with our nervous systems. Unfortunately with adult stem cells, scientists haven't been able to identify and isolate neural progenitors which are what develop into neurons and other nervous system cells. In this case embryonic stem cells would be a better match for being able to create these sorts of cells. 

What is the flipping controversy?

Obviously the main controversy with stem cell research comes from ethical issues involved with the use and destruction of human embryos. Some people believe that human life begins once an egg is fertilized. Either way there are a number of fertilized eggs which will never see the light at the end of the birth canal, whether they're used for research purposes or not. Embryos which have been donated for research come from fertilization clinics. Once a couple/woman has completed a family, and does not wish to implant any more of the embryos, there are one of three options to choose from: donate the embryo to another woman/couple; allow the clinic to discard the embryo; or donate it for research.

I'm not going to get all soap-boxy here, but I will say I'm not exactly the 700 Club type, and I have a disease that will most likely eventually benefit from embryonic stem cell research. This is obviously a no-brainer for me. I'm all for less atrophy, eventually.

How is stem cell research going to be helpful for those of us living with MS?

Stem cell research, most likely from an embryonic source, could have the potential to help those of us living with MS repair and even protect brain tissue. Being able to find new ways to treat MS is also a potential, since stem cells can become human brain cells in lab dishes and then be used to test different treatments. Another huge factor in stem cell research and it's potential benefits for MS is in learning what the underlying causes of MS are. If we know how we got here, or why we have this disease, then every other aspect of this disease and it's research are going to benefit.

All of this sounds pretty flipping enticing to me. To be totally realistic however, all of these findings via stem cell research may be a long way off, however the hope that potential further research holds is incredible. We still have some major hurdles to cross before we can begin to really get into the nitty gritty. Helping open peoples minds to how life changing this research actually is will be a huge factor in getting the funding aspect (which is VITAL) more on track, which brings me to my next question...

What is this stuff in the news about Obama lifting a ban on research?

On March 9th of this year President Obama lifted Bush's stem cell policy through an executive order. By overturning Bush's stem cell policy, the doors were opened for further human embryonic stem cell lines that were eligible for federally funded research. When I heard this news I knew it meant something important was moving forward, but again, I was totally ignorant on what Bush's stem cell policy even was, and what Obama’s order meant to do. So here's what I have come to discover....

In order for shit to really get done in terms of research, federal money is key. The amount of money we need in this field of research is huge, so private funds aren't really going to cut it. The problem with this is that the Bush administration (which is no longer... WOO!) had some major ethical issue with embryonic stem cell research. This being the case, there were ultimately only 22 approved cell lines available for researchers through federal funding, and they were all contaminated by nutrients from mouse cells. This means that they wouldn't most likely not be available for clinical use in humans. 

Luckily there are some major changes in the works with Obama in office, as mentioned above, he has lifted the ban on limiting federally funded research on embryonic stem cell lines, meaning the number of stem cell lines available to researchers will increase. However this doesn't mean that federal money has magically appeared to get the ball rolling. According to the latest issue of Neurology Now, federal funding at the National Institute of Health is the lowest it's been in 25 years. Looks like there's more work to do...

I would have to say that my outtake on life is pretty much 100% realist. Which to many people equals pessimism. To each their own I suppose.

I read a lot of "mommy blogs" (which is weird because I kind of hate kids) and I actually really enjoy them. Recently one of my favorite mommy bloggers made a post about optimism, and how we need to spread some around. That by blogging we need to be uplifting as well as truthful. And while the inner pessimist in me disagrees, a large part of me totally thinks shes right.

So instead of another story about how having MS sucks, or how the drugs don't work, and how we're all going to be in wheel chairs and having other people wipe our asses.....today I will be positive.

If you're on myspace, I do apologize as you already know this story.

I do not take MS medications, (Rebif, Avonex, Betaseron, or Copaxone) and I have no desire to do so. I have gotten in minor disputes about this with my neurologist, but we've come to an agreement. I will wait for a pill form, because I was tired of the injections. So...our agreement includes vitamin D everyday, and yearly MRI Scans until an oral medication is available. This seems like a good deal to me. So last November or so when we made our deal, I went in for one last MRI for the year in December, and about a month ago I got the results. I called into the Dr to see what he had to say, I spoke to my favorite nurse and this is what she said. Basically, I have NO NEW LESIONS. Zero. AND...the ones that I do have are SMALLER. Am I some sort of a medical mystery?! Who knows, all I know is that without medication, I am doing just fine andin fact am improving. While I don't think I believe in blessings, if they existed this might be one.

One more ounce of good news.

I had 3 MRIs in 2008. The two that I had in the beginning of the year cost about $8,000. My broke ass clearly didn't have that laying around, so I did what I always do which is called into the hospital to set up a payment plan. The women on the phone didn't quite understand me and referred me to the St. Joe's patient assistance program. I was talking to the coordinator for the program and she told me it was a program that helps patients pay their bills...not a loan...not a payment program...but actually pays the bill. So I was like well...sign my ass up. Turns out being single, broke, and young can work out for you sometimes.  I waited along time to hear back from her, and when I called her about 3-4 weeks later she told me news that I could never....ever...have expected. St. Joe's was covering 90% of my bill. HOLY SHIT. I thanked this woman probably about 30 times and cried like a baby when I got off the phone with her. She had helped me in a way that I still don't have words for.

I recently received this bill from St. Joe's. It said the expenses at the top $8000 and some change. It showed their assistance $8000 and some change. And then it said what I owed.

$10

I owe this hospital $10, for over $8,000 in bills. I called my mom, my sister, my boyfriend, I called everyone who would understand how monumentally huge this was. I still think hospitals charge too much for these tests anyway, but I enjoyed the fact that I only owed them $10. If I ever hit it rich, I hope to give a gift like this to someone who needs it, like I did.