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.

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?  

 

We use google analytics to tell us WAY too much info about those who are reading our site... like how many time they visit and stuff like that....but what I think is most entertaining is the search terms in which people find our website. Here are a few.
I have bolded my favs.

1. msunderstood
2. buzzing sensation after speed walking ms
3. themsblog
4. avonex and the inability to lose weight
5. dr. stanley cohan
6. "halt ms study" published
7. avonex "brain fog"
8. avonex can you have a tetanus shot
9. carpe diem bannersmyspace
10. embryonic stem cell research pros and cons
11. i hate being a pessimist
12. i think im getting dumb
13. leon mols
14. living with someone who is denying they have MS
15. msunderstood  jackie
16. ms vaccine
17. my multiple sclerosis cognitive problems make me feel stupid
18. pros and cons of stem cell research controversy
19. stem cell reserach 101 home: federal research policy to date
20. the ms society sucks
21. tower study teriflunomide
22. you female doctor gave me tetanus in the butt

What if you didn't have MS anymore? The identity you've created after your diagnosis was now different, and the medications you take were no longer needed. The people you know with MS, you no longer have that first tying thread. Now before you jump for joy at the thought, what if you didn't have MS anymore because you were misdiagnosed?

I read a blog the other day about a woman who was misdiagnosed with MS and later received a different diagnosis after a few years and medication for Sjögren's Syndrome. It really got me wondering mostly because there is this teeny tiny little bitty voice in me that has always said "they're wrong" since my diagnosis. However, most of the time I think that little voice is a big dose of denial and have since moved on, started a website and jumped head first into the MS community. But often I read about other diseases that mimic MS and I really wonder what it would be like if I found out...I didn't have MS anymore.

For me...MS is apart of who I am. Ever since my diagnosis my whole life has changed, the way I think has changed, and the person I am has changed. People tell you not to change yourself or your life after diagnosis, but I think that pretty impossible. I started the newsletter originally because I needed to find a way to accept my diagnosis and find other people "like me". And I did. I have found some amazing people who have helped me more than they will ever know. I have found people who smile every day, and who rarely complain. I have found a group of people who I can relate to and while I may never stand in the same room as any of them, I consider some of them my best friends.

I would say that while my conversations with these people do include typical life stuff, mostly they're about living with MS. We talk to each other because we have few or no others to talk to about it. If I found out I didn't have MS...what would we talk about? Would these friendships disappear?

I update this site almost everyday...if I didn't have MS...what would I then do? I do feel like because of this site, I spend WAY too much thinking about MS and that alone has taken a toll on my psyche, however imagining my life without MS at this point...I don't even know what I do. Its like starting over...and although I'm only 2.5 years in to this journey, I still feel like its taken me a long time to get where I am. I feel like getting another diagnosis would just make me start the whole ride all over again and I'm not sure regardless of the new diagnosis that I want to do that. The reality is that if we are misdiagnosed, its not like its going to be something simple/fixable. Its most likely something very similar to what we're dealing with now. I think if I had a choice, I'd keep my MS...and my MS friends.

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. 

So because of the politics of the internet there is this unwritten agreement that you're supposed to link to everyone who mentions you in their site...and vice versa. Well I think that's crap, which is why we have chosen not to have a gigantic blog roll listing every MS blogger under the sun. If you want to find people out there who write about MS or good research, that is what google is for.

Instead of keeping a list of every important website ever, I have made a list of few of my favorites, most helpful and ones that have listed us without asking for a link in return (god forbid). I will be compiling lists like this periodically, so if you want your blog, or your fav. website listed let me know, or just post it in the comments.



BLOGS - there are easily a million blogs about living with MS. Here are some that I read., many of which I found because they have left a comment on our site. I'm not saying thats the only way we'll list you, or read your blog, but...it helps.

brassandivory.blogspot.com
estreetanne.blogspot.com
noempirenomore.blogspot.com
thompsongirl84.blogspot.com/
Tinglyfeeling.com

FORUMS-Again there are a million forums here are the ones that I have used, and have worked out well for me.

Shift.ms- Two words: GREAT SITE! Dana found this one the other day and we both joined and have found it to be awesome. Its well designed, which I totally appreciate and it also hits the same market that we're aiming for. Young people with MS. They offer more of a community than we do because you can register and login to find people, and create a profile.

msworld.org -Great forum here. There are a lot of people here who are helpful and who have been doing the MS thing a LONG time. Many who are on meds, many who are not, mayn young, many old. It helped me A LOT in the beginning.

friendsofmsworld.proboards.com  -A nice off shoot of MSworld.org

Patients like me This is actually a really cool site. Pre warning there are a ton of bible thumpers on here...however they have great forums and a lot of really good tools for tracking your disease progression. And its not nearly as lame as that sounds. You can click on your level if disability, mark when you have attacks, your meds and dosage, your weight, and also it gives you off an form with ALL this info in it so you can take it to your doctor and file it. The only downfall of this one is that you cannot make your info private, i.e. your weight, symptoms, and stuff, but the idea is that by being honest we can help each other. You can also type in an age range, and location to find people close to where you live. Its pretty cool.

INFO
Rocky Mountain MS Center Complementary & Alternative Medicine (CAM)    - good website with info on alternative therapies. Vitamins, supplements etc. 

Myelin Repair Foundation

Stem Cell Research
         Stem Cells.nih.gov
         The Stem Cell Blog

Medicinal Marijuana

ConquerMS

FINDING CLINICAL TRIALS
National MS Society

MS Clinical Studes

Trial Search from the Gov.

Trial Search:

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 never ended up getting weighed in after my month of working out. I finally weighed myself, (but didn't take measurements) and after 7 weeks of intense work outs I lost 1lb. 1 fucking pound.

This is beyond discouraging. I was talking about this with the doctor and he suggested some thyroid tests. And at this point in my life, I would gladly take a malfunctioning thyroid because then I would have some hope. Well I got those results today...I am A-ok in the thyroid area.  WTF.

I know that I feel better in the sense that I can do things longer, and be less winded. And I know that being mobile and feeling good is more important that looking good, but damn it, is it so wrong to want to look good too? I understand why people give up and become severely obese. I get it.

i'm not sure what to do anymore. I have cut out all the easy stuff, like pop, fast foods and snacks. I eat more veggies and fruits. I eat smaller portions, and have changed my protein intake. I eat my larger meal during the day and have a smaller one at night.

I feel depressed and hopeless at this point. I'd love to talk to a dietitian or nutritionist and get their advice/opinion but oh wait....I can't afford it. (for  a profession that is so concerned about helping people, you'd think their pricing would be much lower than about $100/session)

I do live alone, and I do have a house payment, so buying expensive foods isn't really in the plan either. I don't really buy quickie meals, I do try to cook, and I don't use that many ingredients. I don't understand what I'm doing wrong here. I eat better than I did before I joined the gym, and I'm working out a min of 3 hours a week.

I have thought about doing the Swank Diet, but starting a life long diet plan seems like such a process. It seems damn near impossible. I don't want to be one of those people who can't go out, and can't do anything because they can't eat anywhere but their own kitchen.

Does anyone do the Swank Diet? What do you think? Does anyone have ANY suggestions for me.

Ugh. Whatever. I'm in a real shit mood today. It feels as though my moods have been severely effected by the weather lately. When it rains, I find it hard to leave my house, when its sunny I am  happier than can be. And it has been raining for the last 2 days....

Well its been awhile since I've last updated. I gave the fiber, the papaya enzyme a good month to work, and even though there was that one day of hope....I saw no changes.  How effing depressing.

Sometimes I wanna I just wanna be like "really...ass problems...c'mon, throw me a bone here". We've been talking a lot about symptoms lately and there are some really shitty ones out there, but sometimes I get really pissed off and bitter that mine all revolve around my asshole. I hate being Fiber conscious, and buying fiber products at the store. I'm not 80 damn it, I'm a pretty attractive chick in my 20's...buying Fiber at the drug store doesn't exactly do much for my self esteem.

I went back to the gastro, and he said he wanted to give me one more Fiber supplement to try. He wants to try this one last thing on the natural route, because, and I quote " I'm too young to start on medication".

While I appreciate his eagerness to keep me off extra medication, and taking my age into account...that doesn't change the fact that I AM, in fact young, and I DO in fact have MS, and I also CANNOT POOP.  This is one of the few symptoms that I deal with constantly, and one of the few that I would gladly take medication if I knew it would help.

So needless to say I'm trying a different supplement now, this one is Fiber-sure, which is a powder and I am starting on 1 heaping teaspoon a day.  I was also instructed that if I do not have a bowel movement within 48 hrs...to also take milk of magnesium. I am not taking the Benefiber or Papaya Enzyme with this other stuff. So this could be an interesting month...I'm not going to lie...I'm hopeful. But I also fear it will work too well and I will be shitting my pants uncontrollably....

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.