Field Trip 09/28/2009
 
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So I got this flyer in the mail last week from the Providence Brain Institute, where I go to have all my brain needs met. There was a forum dealy thing happening not too far from where I live, and Dr. Stanley Cohan (my specialist) was the speaker. "What Every Patient Should Know About MS" was the title, so I figured what the hell. I registered to attend one of these quite a while back, and didn't end up going, so I figured I might try to make this one. For some reason I felt like it was something I should do, at least once. 

My biggest concern about going to this thing (yep, I like to make mountains out of molehills) was the fact that I figured there would probably not be a many younger people there. Well, that was an understatement. There was like, none. I got there and peaked in the doorway to about ten round tables, filled with older people. And we wonder why there is this idea out there that MS isn't a disease of teenagers and twenty or even thirty somethings? Jesus, it's because we don't show up to anything! Us younger folk need something a little more enticing than a "free lunch" to get our asses out the door. Anyhow I walked in and immediately felt like some sort of a leper, haaahahaha. I'm supposed to be in a room full of people who have the same shitty ass disease that I do, my comrades, but no, I felt completely out of place. I'm sure much of the confusion I saw in the faces of my fellow MSers was in my own head, but I'd say there was definitely some there.  

 
 
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Hello peoples I am Dana, friend of Jackie, and collaborator on this blog. I have truly flaked out on writing, and I'm sure I could list off a bunch of excuses, but i'll go ahead and spare anyone who is actually reading this. In order to get myself back in the groove of contributing here, I am just going to sort of update/ramble. Here goes nothing... So I spent an interesting summer house hunting, and my boyfriend and I are now finally in our new home. I can definitely say the energy that it took to find/buy/move into/begin minor renovations has truly been...grueling. On the same note it's been totally rewarding and all that cliche-buying your first home-bullshit. I have a really awesome neighbor who is nearing eighty, living alone, and certified schizophrenic. She has decided that I am her new best friend, so I've taken to sticking post it notes on my front door which read "do not disturb" when I truly cannot deal with crazy babble coming from an elderly lady in her granny panties (no, i'm totally serious). Sometimes this actually works, although posting notes on my door makes me feel a little crazy as well. Even though crazy old neighbor lady is totally endearing sometimes, I remain slightly leery given her fragile mental state. Speaking of fragile mental states, I could probably touch on my own, but I'll save that for another post. 

So I have also just begun school again, as was the plan pre-diagnosis. While I won't say that MS has totally overhauled my plans, I have made a change in my major as well as decided to completely finish my degree online. Both my doctor and my neuropsychologist had suggested that I take school quite slow, and against my better (yes, better) judgement, I am only taking eight credits this term. I have already found myself wishing for a bit more to do, so needless to say, lesson learned. At the same time, there is that little issue of not quite knowing what one day to the next will bring, and tomorrow I might be thanking my lucky stars for so few classes. The unexpected twists and turns in how I am feeling has been by far the most irritating part of this disease for me. I am still working a humble three days a week at the coffee shop, which is the least I have worked in my seven (yes, seven) years there. When I space out on whether I have charged someone, or work to get some flipping straws through lid (who even drinks coffee with straws?) I just make a big fat joke about how I'm getting too old for this job or I've had too much caffeine. Laughter is the best medicine, although some people have shit for a sense of humor. To those people, I smile and make a secret wish that they spill coffee on their crotch. 

 
 
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Looking through the Summer 2009 issue of Momentum, the NMSS magazine, I came across the page that dealt with the issue of brain tissue donation. I don't know how quickly one decides that they're cool with donating their own brain matter once they're dead and gone, but apparently I do so pretty quickly. According to said article, less than 1% of people living with MS "make arrangements for a posthumous donation of brain tissue." Those are some puny statistics. I immediately knew that this was something I wanted to do, so I earmarked the page, planning on coming back to it later. It was only after having my neuropsych appointment and thinking (borderline) obsessively about brains for a few days, that I remembered the article. 

Rocky Mountain MS Center was the first of three tissue banks listed on the page, so naturally it's the first one I looked into. After checking out all of them, I decided for a few different reason, that this was the tissue bank I would sign up with. One of the main reasons was the fact that the procedure could be done in my hometown, if you will. I know that another one of them bascically said the procedure would have to be done at their facilities, which just so happened to be in Chicago. Somehow I think this seems a bit unmanageable. Also, the Rocky Mountain MS Center was the tissue bank which was exclusive to tissue donation specifically for MS research.   

I suppose this seems like a bit of a morbid subject, maybe that's the reason that so few people have signed up. Who really wants to talk about death anyway? In thinking about being an organ or tissue donor, I suppose you have to actually ponder your own death, on one level or another. For some reason I don't really get all that far in this part of the thought process, it's just kind of a "meh" thing for me. I have been signed up as an organ donor for about eleven years now, and have only recently discovered that perhaps this is something I will have to change. I learned from one of the sites I visited that because there is a chance that MS may be caused by a virus, there are certain organs which are not recommended for donation. So rather than giving someone a kidney with possible side of MS after I kick the bucket, I have decided that donating some brain tissue for further research into MS would be a better option.

It goes without saying that for those of us less educated on the removal of brain tissue, it sounds kind of gorey. The procedure is actually quite simple, for the trained professionals of course, and frankly we aren't going to present for any of it, at least I don't believe so. There will be no visible damage done to your body, save whatever fate may have nabbed you post donation. So if you're checking yourself out from some distant planet, or perhaps as an annoying fly buzzing around the funeral home, and you happen to catch a glimpse of yourself post bucket kicking, there's a good chance you'll still be...pretty. 

You can check out the latest issue of Momentum for more info, or just dig around on the internet for that matter. I downloaded some forms from Rocky Mountain MS Center, went over them with my Mom and boyfriend, and have sent them in. You'll need to make sure you've made clear your wishes with your closest family members, since they will be responsible for making this happen, once you've made your final exit...not that any of us are going anywhere, anytime soon. 

 
Brainz and stuff 06/02/2009
 
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So it's been forever since I did an update on anything from my little corner of the MS world. I finally have something worthy of writing about however, since yesterday I went in to have some neuropsychological testing done. I was oddly exited about going in for the tests, I guess partially because the brain is just so darn fascinating. Since learning that my brain may look a little more like swiss than cheddar, I definitely want to learn more about how it processes. 

My boyfriend went to the appointment with me, since I wasn't sure I'd want to drive home from Portland afterwards, considering my taxed brain may not enjoy the highways and byways. Also, he hasn't been to a Dr. appointment with me since I was seeing my first neurologist, and I think he secretly enjoys being a part of this process. I know I like having him there, simply because it helps make me feel a little more understood by him.  

So the first half hour of the appointment consisted of just conversation about changes that I have noticed not only in the last few years, but since my diagnosis. I went over with her the issues of short term memory, my inability to focus at times, as well as just feeling overall foggy. She asked a lot of questions about work and we talked a bit about my plans for getting back to school this fall. She was a bit concerned at my plan to do full time classes, as well as keep working (albeit very few hours) and suggested maybe doing part time classes. I'm definitely taking this suggestion into consideration, but stretching out my education any longer than I need to, isn't exactly thrilling. I am the queen of the impatience. She also offered a few suggestions for ways to make work a bit more bearable when I'm finding myself overwhelmed. We also talked a lot about stress, which isn't something any of us can just make disappear, but she wants me to work on ways to better deal. She has referred me to a certain psychologist who will help teach me some skills in this department, and I'm not opposed to that at all. It was interesting to hear my boyfriend pipe up and answer some questions regarding changes that he's noticed in me as well. I have to admit, it was definitely interesting to hear things from his perspective. He pointed out my increase in "word fishing" which is sort of hilarious, as well issues with my memory. He talked about how he'll tell me something, and I will swear up and down that he never told me. Dr. Sherman made a good point, that part of this is just selective hearing, which happens a lot in relationships, but the fact that it's happening so much may be part of my cognitive issues. One thing that was slightly disturbing was to hear was that he's noticed me begin to struggle with writing, which is something that came a lot easier for me in the past. He mentioned the blog, and how it could sometimes take me days to finish writing a short little post, but how in the past I could write a research paper in a day. I was a little embarrassed by this verbal, third party acknowledgement of my less than exemplary writing skills. I feel like it's a good metaphor for how I'm just sluggish at times, with everything. I feel like my processing time for just about everything, as well as my production time, has gone way down.   

 
 

Sometimes I feel like a flake. The crappy part about this is that flakiness is one of my biggest pet peeves. I cannot stand flakey people! I hate when people bail on plans or lack planning skills in general. I have unfortunately become one of those people. It seems like I never really know how I'm going to feel from day to day; be it my level of energy, brain fog, headaches...and the list goes on. When I think about how disappointed I become with people like me, it really sucks. I have this major complex about being the one who disappoints. Hypocrite that I am, I have been perpetually disappointed with people lately. I think it's true that what we can't stand in others is really just what we hate most about ourselves.

So I'm feeling the MS "flake factor" trickle over into every aspect of my life. It seems like the time in between feeling like a steaming pile of poop, is just not enough to make everything I want to happen, happen. Perhaps the geniuses who have told me that it's almost always Type A personalities who get MS are right? Somehow I find this doubtful, but perhaps I am too anal for my own good. It's like I have this ever growing list of things going in my head that I want to do not only for myself, but for other people. Unfortunately I feel like it's effing baby steps all the way, and by the end of the day I've barely made a dent in my list of things to do. Why is it that shit is just so overwhelming lately?! Have I always been like this, or am I letting MS make me feel like I can't accomplish everything that use to seem so easy for me?

On the social side of the "flake factor" I feel like I'm not exactly being the friend that I want my friends to be. One of the things that I have found so important for me is just feeling like my friends honest to god, give a shit about how I'm feeling or what's going on with me. The awful part about this, is that I do a terrible job lately of making sure people know how much I actually "give a shit" what's happening in their lives. I guess it's good to remember that I'm not the only person who has had shit hit the fan in the last year, in fact I don't know a single person who isn't dealing with some major life malfunction these days. Either way, I realize that social crap is a pretty important part of our "being" and it's something I definitely need to work on. 

The hilarity to all of this is in about five minutes, I might have myself convinced that I am conquering the world. I just wish these moments of self assured victory weren't so fleeting. 


 
 

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. 

 
 

I have such a fascination with faith and spirituality. In thinking about faith there is inevitably this idea of meaning which translates into every aspect of ones life. After all, our world religions seemed to evolve out of this need to make sense of everything. So many people rely on their respective religion or belief systems to find this meaning. Some of life's toughest questions are supposedly answered, or at least the fear they bring out, quelled, by ones beliefs. I sometimes feel a little envious of people who are able to give themselves over to their faith. How great would that be, to truly believe something? It is hard for me to wrap my mind around doing this for myself, simply because I can't put all my faith into any one religion. I see pieces of all of them which are valid, even if some of them have some pretty shoddy redeeming qualities. 

Obviously one of the ways in which religion and faith come in awfully handy is during times of trial. Obviously for many of us this has come in the form of MS, among other things. These questions that I had before the diagnosis are now magnified. What really is the purpose of my life? And no, I don't think I'll figure it out by reading The Purpose Driven Life. Seriously though, how am I making meaning? Hypothetically speaking, if I had a faith that I was strong in, would I be handling any of this better? In a perfect world maybe a Bible verse or a lesson from the Qur’an would help snap me out of my bubble of self pity, but alas they are nothing but interesting written works, at least from where I'm standing. And furthermore, maybe it's a little presumptuous to assume that this is all it takes for a Christian or Muslim to find comfort. Maybe their comfort comes from something far deeper than just their sacred texts. I suppose it is this sort of faith that I envy, for lack of a better term. I find myself completely irritated with people who cheapen their faith by praising God every time they take a shit, or wake up and find the sky is blue for instance.

So I joined this forum called "Patients Like Me" shortly after my diagnosis, and it definitely helped me answer some important questions, as well as reminded me that I wasn't the only person in the world with MS. As Jackie mentioned in her post with various links however, there are a ton of "Bible thumpers" on the site. It seems there were a lot of "pray for such and such" and "God bless yous" being thrown around. A lot. I replied to a post made by a younger guy who I believe was atheist, who was sort of complaining about the overabundance of religiosity on the site. He was wondering if there was any place out there for MSers who weren't religious. I remember making some reply about the importance of faith as a coping skill so to speak, for those who have it anyway. But I suppose he is right, what about people who don't have faith or belief in religion. I guess I'm not really asking where we're supposed to go for support, but moreso where do we find our strength, if it isn't in Jesus or God or Muhammad or Buddha or some good old fashioned Sunday fellow-shipping? And on the flip side of this, how many of us are finding ourselves thinking more about our beliefs or lack thereof since being diagnosed? I wonder how much my having real faith in God or what have you would change the way I'm dealing with shit lately?  

 

 
MS Walk Yo!! 04/25/2009
 

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. 

 
I, Me, Mine 04/21/2009
 

I had a conversation with a good friend today and she was explaining to me how it just didn't seem like I was affected by MS. "I know I don't see you every day, but you seem like the same Dana you were before MS," she said. I think that what she really meant, was that it was hard for her to understand, because it didn't seem like I was physically dealing with anything. I did a lot of explaining about MS, and how it works. I explained that following my attack in November, there are parts of me that aren't ever going to be the same. Symptoms that I am going to continue to have, on a coming and going basis. Because my symptoms aren't necessarily painful, and because they aren't visible to others, I understood why it was so hard for those around me to really understand. I explained to her that I didn't really expect anyone to "get it." I didn't mean this in a negative way at all, I was just being honest. I said that if the tables were turned, I would feel the exact same way that she did. When I was having this talk with her, I ended up making a point that actually sort of shocked me, since I don't feel like I'm all that great at expressing myself lately. I told her that although my symptoms aren't generally painful, and I'm not scootin' around on four wheels, I am reminded of my disease each and every day. Whether it's my little pinky that's shaking uncontrollably as I write this, or parts of my face going numb, or some random muscle twitching like mad, for just a few minutes. These things are so small and they aren't typically painful, they are irritating at best. Everyday though, these invisible symptoms are my reminders. I am reminded each and every day, sometimes in very small ways, and sometimes more dramatic, that my body is ever changing. I explained to her the fears that I have had to deal with, have been one of the most difficult parts of this disease. I like to think I'm tough enough to actually deal with the physical or cognitive symptoms that may rear their ugly heads, but I fear what this would do to the people I love. Maybe I'm not yet ready to admit out loud that I fear becoming a burden on those that I love; that I'll be a source of shame, or that my life will cease to provide some greater purpose. I'm smart enough to find consoling words for myself, so I don't necessarily feel like this is something I need to hear from others. I am not so consumed with these fears that I can't see straight, but for me to deny that there are moments when I become overwhelmed by them, would be downright false. 

I am just five months shy of finding out that I have MS. This is still fresh for me, and sometimes I forget how new it really is. Although I'm not dim enough to feel like I have totally come to grips with this disease, sometimes it feels like I'm just starting over completely, back at square one. I found myself hanging out on the bathroom floor yesterday, begging whoever the hell was listening to my silent plea, to just take this away. "I don't want this anymore" was what I kept saying. How appropriate that I should hide myself away in the smallest room of the house. I feel like so much of this disease is about hiding from others how broken we sometimes really feel. I know I'm not the only one who spends unnecessary energy making sure that others don't know how shitty I really feel, and I'm talking about emotionally. And on the flip side of this, when I am spending time with others, I generally don't want to have go out of my way to let them "know" angry or sad or scared I sometimes feel. I don't want to beg people to see how "affected" I am. This surely only adds to the fact that it may seem that I haven't been changed in any way by MS. This disease has left me at times, feeling more isolated and alone than I have ever felt in my life. I don't necessarily feel like this is something that will change either, and I don't totally think that it has to. I have a community online in which I can find true understanding, and I have family and friends from which I can find true compassion, but I think there will always be moments where none of this is quite enough. I have read various crap about how we're really supposed to be our own best friend, and I sort of understand this a little better these days. There will never be someone who knows "me" better than me. Maybe these little "bathroom breakdown" moments are just part of what keeps me being "mine" and mine alone. But anyway, enough about me and my feelings. Barf.

 
 

I am now on day three of taking my little "pep" pills, as they have been affectionately termed by others. This of course would be the wonder drug I was hearing so much about, Provigil. MInd you the term "wonder drug" was used by my local news-channel in a story they did about  it *gasp* possibly being overused/prescribed.  Anyway I used my cold virus this week as an excuse to stall starting it for a few days. My feelings towards symptom therapy for myself, are pretty inhibited. I really want to try my hardest to stay as UNmedicated in this regard, for as long as I can. The majority of my physical symptoms are just irritating sensory issues that are currently manifesting in a small variety of ways each day. The fatigue however, is something that is both new and completely unwelcome. I generally hit a wall at a certain part of the day. Not only does the body want to shut down, but the brain starts processing in all sorts of wrong ways. If you got the MS bug, you know what I'm talking about. It isn't just a "boohoo I'm sleepy" sort of thing. I can safely say that I used to think people who complained about "fatigue" were really just big babies. I absolutely never understood it until I experienced it. 

Back to the issue at hand here. I am taking 100 mg one time daily. I make sure to take it in the morning, because otherwise it could mess up my sleep. I definitely don't need any added help in the "losing sleep" department. I have heard from others that are on it, that if you do two doses a day, you should make sure to take the second dose early in the afternoon. I have noticed a dull headache the last few mornings, which may be courtesy of the Provigil. They are quite similar in fact to the dull headache I have for a day or two after my Avonex shot, and it isn't anything that a few Tylenol won't fix. Other than this, I have noticed that I do need to make sure I'm eating every couple of hours, otherwise I get a little queazy/shaky/weak thing going on. Both of these issues are totally manageable, and may not even be side effects at all.   

So on day one, I definitely began noticing a little increased energy within a few hours. I took the pill shortly after getting to work, and normally Fridays (which are actually my Mondays) are a total energy zap for me. I start my day before five in the morning, and generally get home shortly before two in the afternoon. As pointed out by my doctor, the multi-tasking involved with the job is a bit taxing on my wavering brain at this time. I sometimes think it isn't so much the physical aspect of my job that wipes me out, so much as the mental. I'm only making coffee, not performing brain surgery or anything, but it's become pretty taxing as of late. This has been a bit of a blow to the self esteem, considering this was a job I did with complete ease for over six years. So these days when I get home from work, I really need some down time before I get going on anything. I don't really want to converse with anyone, and doing a worthwhile job on anything else for the day seems pretty daunting. I generally feel like I finish out my days after work in a sort of glazed over stupefied state. Long story short, I got home from work on Friday, and I was like chatty fucking kathy. I couldn't stop talking, and I was even beginning to annoy myself. I could tell my boyfriend was a little shocked. I headed out the door for a doctor appointment, went grocery shopping, and basically had boundless energy the entire day. It was truly magnificent. 

Day two was a little less dramatic than day one, and perhaps there could have been a little placebo effect happening previously. Either way, I made it through a super effing busy day at work, and came home without feeling completely wiped out. I didn't feel like I needed time to just shut down completely and try to restart (like a terrible PC). Here I am now at day three, and I am still feeling pretty great. I am not doing jumping jacks in place by any means, but I'm awake and a quite a bit more clear headed than I would normally be on a day like today. I have read that Provigil hasn't just helped create more "wakefulness" in people, but has also improved their ability to think more clearly. So, shaazam. Sugar pill effect or not, I'm please. 

I shouldn't exactly count my eggs too soon here though, it's only day three. In the life of a medication, that's like a nanosecond. Either way I'm hoping these results continue, and perhaps I'll get my ass back on that treadmill. Apparently I've packed on a few LB's in the last few months.