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. 

So I got this invitational flyer in the mail the other day, from MS ActiveSource which is a sort of educational program run by Biogen Idec, the drug company that produces Avonex. In early April there will be an "educational event" in which my specialist Stanley Cohan will be speaking, along with author of MS and Your Feelings, (which I liked quite a bit) Allison Shadday. For some reason the thought of going to an event like this sort of freaks me out a little. If I knew that I could go and not have to talk to anyone if I didn't want to, then I think it would be great. If I was totally miserable and I knew that there would be a way for me to politely leave the building without making an ass of myself, then I would definitely go. What if I show up to this thing and I'm the only one under the age of fifty? 

Okay, so they are also trying to entice people with a free dinner. The whole dinner thing is a bit of a turn off for me. I either want foie gras or french fries, but I'm sure the meal with be some sort of unhappy medium. What would really bring in the masses would be an open bar. Who's planning this event anyway? 

On a more serious note, I have these back and forth feelings on what is positive for me in terms of learning about and dealing with MS, and what is not. I want to be an "active" participant in my disease and learn as much as I can, but going the route of "educational events" leave me sort of uneasy. I suppose this could be a little of the hermit in me, coupled with my fear of what other MS patients in the room may be like. I am selfishly afraid of going and seeing people who aren't doing as seemingly well with their disease, and just feeling deflated by it. I seriously need to get over this way of thinking, and perhaps this would help me push through that. 

I went ahead and registered for the event just in case. I sort of have this dare with myself to go. I think something like this is worth trying at least once, and the fact that my specialist is speaking along with Allison Shadday, gives it a little more pull. I suppose the worst that could happen is I go and it ends up being butt loads of propaganda trying to boost up Avonex. Or maybe I will come home feeling a little more confident or inspired somehow. I just don't know.  

Either way, I have until April 8th to decide. 

So today was my first follow up neurologist appointment since starting Avonex. I went in with a few questions written down, since I seem to space out immediately upon entering the office. It seems like everyone is zombied out, from the lady at the front desk, to the nurse, the other patients waiting in akward silence. I half read some stuff on stem cell therapy in Neurology Now, but couldn't really focus much. I just brought my copy home.

 Anyhow there was the typical exam with pins and pokes and walking and the like. My doc seems to think that I'm doing well, and I'm pretty sure I am too. I asked about the fact that there hasn't been a day since November that I haven't had any sort of symptom, be it buzzing or numbness or what have you. I asked if this was normal, as in is this what "remission" is like for me. It's different for everyone, and I know this. I am just wondering if remission for me, or for anyone, means feeling absolutely NO symptoms whatsoever for any length of time. He couldn't really answer that, and I suppose this is okay. I also asked when I would have my next MRI, and he said either if I have a worsening of symptoms, maybe in a year, or perhaps if the specialist wants one sooner.

Even though I knew going into the next question what the answer would be, I sort of wanted to know what his take would be. So, I asked if when they looked at the results of the next MRI, if they would be able to tell me if the Avonex was really making any sort of a difference. At first he said it depends on what week you ask him that question, since opinions are always changing. He then went into the schpeel about how short a time the drugs have been on the market, how we really don't know if they're helping this generation of MS patients, but there is a chance that perhaps less will be disabled, as in wheelchair bound and the like. It was the answer I expected, and I appreciated it. I know it isn't his job to feed me a line of crap, and he didn't. I was pleased.

Another one of my questions was in regards to the cognitive issues I have been dealing with. His response to this was to ask me if I was depressed, which I do understand. I realize that depression can play a huge factor in cognitive issues, but I don't necessarily think this is my issue. Understandably so, I'm not the happiest I've ever been in my life, but I'm certainly nowhere near the saddest I've ever been. I feel pretty even keel right now, especially considering the circumstances. He suggested I sit on the issue until the next appointment, and then possibly think about starting anti-depressants. While I appreciate the thought, anti-depressants are not on my list of to-do's. I have had pretty negative experiences with them in the past. I'm not writing anything off completely, but it would take a heck of a lot of depression to put me back on medication. I think the cognitive issues will be something that will probably be better addressed with the specialist, which is a-ok with me.

I didn't really come away from the appointment with anything I didn't know before, and this is just as well, and what I expected. I understand that we can't expect doctors to have all of the answers, especially when it comes to a disease like MS. In a sick and twisted way, I sort of enjoy being somewhat on par with my regular neurologist in terms of knowing what's going on with my disease. On another note, I was hoping he would redeem himself today, after my unimpressive prior visits. I am happy to say that he was the least zombie like out of everyone in the office today. I have found that just being more assertive and demanding with him seems to work a little better. I also think he appreciates the fact that I'm doing my research, and not simply relying on him for all my information.

So today marks week seven of being on Avonex. After my horrid shot experience with week five, in which I called upon the nursing expertise of my neighbor to inject me, I am back on track as of last week. I have been practicing on an orange *almost* everyday, and I guess maybe that's helped a little. My neighbor came over both last week and this week to sit with me, and honestly, if she hadn't, I think I would have been in probably the same boat as week five. My big issue is that once I get my needle on, I sort of get it close to my leg, and freeze. Something I did a little differently today that seemed to work pretty well, was simply not looking as the needle went in. I just sort of place it where it needed to go, took a few deep breaths, and focused on the wall in front of me as I injected. My blood was definitely pumping, the heart rate was accelerated, but the longer I wait, the worse it gets. Ugh. I'm glad it's over, and next week will be the real test, since I won't have her nursing eyes here giving me the added pressure I need to just flipping do it. Overall, I do have faith in myself, I know I can do it. I think I've just mentally built it up to be this thing that's big and scary, which is strange, given the ease I had during the first few shots. Thankfully it's only once a week, which Jackie pointed out as the perk. Definitely the one and only perk.

 Tomorrow morning I go in for my first follow up since starting the Avonex. I am interested whether or not it will really be worth my time/money. I don't want to be one of those people that tirelessly complains about how useless their doctor is, but honestly, the neurologist I'm seeing right now seems pretty useless. He couldn't answer any of the questions I had for him at the last appointment. He sort of just likes to make things black and white, yes or no. He also enjoys answering questions by simply bobbing his head up and down, or back and forth. If there is anything that I have learned about MS thus far, it isn't flipping black and white. It seems to me there's an awful lot of grey area here. Acknowledgement would be nice. Anyhow, perhaps I'll go in tomorrow and he'll knock my socks off, if not with personality, then at least with some inkling of doctorly know how. I am crossing my fingers that my uber busy specialist will not re-re-schedule my appointment again, which is now set for April 14th.

 On another note, my mom dropped by out of the blue today, and she was all teary. She had been listening to Dr. Laura, whom she knows I LOATHE with a passion. There was a male caller who was 26, who called in for (ugh) Dr. Laura's advice. So he was diagnosed with MS, and he was wondering if it was right of him to continue to pursue finding a relationship, given the possibilities of disability in the future. My mom was seriously torn up after listening to this, which left me mildly depressed as well. I know that I haven't been diagnosed for very long, but I do remember the first month being the absolute worst for me, as far as fear and anxiety. I knew it would get better, and it has, although I'm by no means whatsoever "fear free" when it comes to my future. Is it possible to ever be completely free of fear when you live with a disease that can come and go, and hit you totally out of left field? I don't think so. 

Anyhow, I "secondhandly" felt super bad for this dude. Seriously, it's hard enough being an openly emotional girl, and dealing with this. Being the free spirit I am with relaying my true feelings, I really haven't been 100% open with anyone in terms of future fears, except for with my boyfriend and mom, and jackie of course. I wonder what sort of support system this guy has. If he was calling Dr. Laura for advice, I'm thinking he might need more people to talk to and confide in, and I'm not talking "internet hugs" or some crap like that. This dude needs to be heard, and needs somebody to tell him that he's totally normal for feeling the way he feels. My answer would simply be that there is no reason he shouldn't continue to pursue finding a relationship following his diagnosis. He may not find a cool chick right off the bat, who is willing to date someone with MS, but I believe he will eventually. And once he does, nothing is written in stone, MS or no MS. I don't think any of us can map out our future the way we want, in terms of the relationships we have now, and the ones that have yet to begin. We can work to make them the best they can be, and this is all we can do. I'm sure there's better advice out there, but in my sleepy Avonex haze, this is the best I can do.  

Yesterday marked week five of being on Avonex, and week one of me NOT injecting the medication myself. Originally I had planned on having someone else do the shot for me, but the chosen few who I would have been comfortable handing this task over to, were less than thrilled about the idea of jabbing me. So I decided that I was okay with giving it a go on my own, and after training with the nurse, I was totally comfortable. After practicing for a bit, I got my meds ready (I do the powder form) and stuck my little one inch needle in the syringe. Before anybody could even catch it, I had stuck it in. I didn't even flinch, and really didn't feel a thing. The other great part about this whole deal, is that I haven't had many side effects to speak of. I'm not sure what this means, but I'm not complaining. Anyhow, back to how I had zero issues week one. By week two, it was just a little bit harder, and the same deal with week three. I did start feeling the injections. Granted it wasn't like someone was sawing off my leg, but it was definitely irritating. Week four I had my first major mental roadblock, and jabbed myself, took it out, and had to re-jab. In between the re-jabbing, I got up and sort of paced around the house, saying out loud, "I don't think I want to do this anymore". Within a few minutes I had gotten over the shit fit, and gotten it done.

So week five was sort of the same deal as week four, only magnified by about ten. I sat there for an hour, just trying to get my hand to stick the needle in. I just couldn't do it. I tried deep breathing. I tried visualization, my version of it anyway. Andy attempted to sing "Eye of the Tiger". I took a smoke break. I paced around the house. No luck. At the risk of sounding like a total lush, I ended up guzzling down four shots of vodka. Well two and two, and mixed with a little tonic, okay! My training nurse had actually told me during week one, that some people like to have a drink before their shot, because it can help them relax. Actually, she only told me this after I had made the joke about the idea of drinking beforehand, but whatever. So I am a total lightweight and when I do have a drink, I normally have one or two, and guzzling isn't involved. So after the first drink, I was like, this wasn't enough, I'm not loosening up. So Andy made me another. I downed this one, and still couldn't get my hand to stick the needle in. I started getting frantic, just because I couldn't turn back now. I was debating on calling my doctor and seeing if their was a nurse in who could give it to me. And then I had a lightbulb moment, and realized that I had a nurse right next door. My awesomely fantastic neighbor Kathleen, who is a nurse at the most appropriate place for dealing with someone like me, the state mental ward. It was right around the time she normally got home, so I sat around for a few minutes watching the window for her to pull in her driveway. Before she was even out of  her car, I was at her driver side window. 

She opened the door of her car, obviously seeing that I was distressed. My hair was a mess, I was wearing pajamas and thigh high socks, with the left leg of my pajamas pulled up so as to expose my shot area. I had a little orange circle drawn where I wanted the needle to go, which is something I've always done. I guess this makes it sort of seem like I could be playing darts. Ah, fun and games! So I immediately welled up into tears and starting drunk babbling about how I just couldn't do it this week, blah blah blah, and I really needed her to come over and give me my shot. She told me to give her fifteen minutes to get the dog inside and what have you, and she would be over. So she gets over to the house and by the time she sits down to give me the shot, I'm well aware of my level of drunkenness. As she got everything ready, after lecturing me on never leaving my needle exposed, which I had done, for over an hour at this point, I fell over on her shoulder. She jabbed me super quick and I was so stressed out that I jumped and was sure she would have to re-do. Nope, she was done. I couldn't believe she had it done in like, three seconds. When I do it, I stick it in, sit there for about two seconds, pull back, and then sloooowly press down on the syringe. I'm always super slow, which leaves more time for freaking out. 

Afterwards, she sat with me for awhile, and had me practice on an orange. Although I was drunk, it was helpful. We sat and bitched about the medical industry, and insurance companies, and she told me a story about one of her craziest patients ever, "the screamer". We take pride in our state mental ward, as One Flew Over the Cuckoos Nest was filmed here. Anyhow, I honestly have the coolest neighbor on the planet, and I am so thankful for her. If she wasn't around, I'm not sure what I would have done. Although I know I would have gotten the job done one way or another, it would have been way more hellacious. The mental anguish alone was enough to make me fear my fricking legs would go numb, or maybe one of my eyeballs would decide to quit working. Ugh. I don't know if it's worth the trouble of trying to be all tough, and do it on my own. 

Kathleen said she would come over again, next Monday night, and work with me on the orange again. She doesn't want me to give up on the idea of doing it myself, but honestly, I really want to. We shall see. If nothing else, she said she wants me to watch the needle next time, to work on desensitizing myself to the whole deal. Even though I spent the first four weeks doing it myself, I have become progressively more petrified each week. It seems like I am going backwards here, although my training nurse warned me that this is something that could potentially happen. I figured that was a bunch of BS, I think I got a little too cocky. 

Either way, I am thankful that I have an awesomely cool nurse for a neighbor who is willing to help out.