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So I wrote awhile back about my little bout with the big "D" (a term which allows me to skate around the word depression). Well I should just shout out it out here, since so many of us deal with this bullshit. DEPRESSION!!! Anyhow I was really moved by the comments which you all left, I wanted to thank you for not only sharing things which may have been personal to you, but also some pretty darn good advice. It seems like opinions on treatment options or perhaps consciously not treating depression, seem to really run the gamut with us all. I think I can relate to each and every one of you. Whether or not we're all in the same place in terms of accepting it or treating it, we can all relate to one another here. 

It honestly sucks to have to admit to yourself that you are indeed depressed. Obviously we all have days where we get the blues, or when this whole disease thing is just totally deflating. We know what it means to question our existence, our worth, and our future capabilities. These aren't questions that should be foreign to anyone, however I think with the advent of MS or whatever health issue may come your way, we begin to ponder these things with a little more depth, and perhaps a little more often. It can feel like a daunting task at times, when you get yourself caught up in a vicious cycle with these questions. I think for me it's definitely more healthy to keep them on the back burner and focus more on the here and now. However, I am not always so perfect. With the addition of a new symptom or a week of feeling like total crap, it seems like the whole cycle of self examination and questioning begins again. After not being able to snap out of it, I decided to finally admit to myself, and apparently all of you who read this site, that I indeed was depressed. Thankfully I am feeling much better, although I know that depression is something that can sneak back in at any time. 

So here's what I did, while in the comfort of my pajamas and probably a large bowl of chocolate somewhere nearby. I finally made the effort to try and get in touch with a psychologist to begin some therapy. This time I actually found someone who accepts my insurance, and I made sure to find someone who has experience treating those with chronic illness. Although I won't have my first appointment for another few weeks, I think just finally making the effort to find a doctor for this aspect of my disease was important. Taking this step has definitely helped me move out of the major funk, and step back into the light as much as possible. I tried getting therapy last year to deal with the emotional aspect of being diagnosed, but found out the therapist I was seeing didn't accept my insurance. I just gave up after that, so giving it a go again and actually having coverage will be phenomenal I think. 

It's amazing stepping outside of myself in the here and now and thinking back to how low I was feeling a few weeks ago. This just reinforces more for me how down I was, because I honestly cannot imagine feeling some of the negative things I was feeling just a short time ago. It is so hard feeling unpredictable with your moods, and it becomes so hard to try and communicate in any sort of meaningful way with the people around you. I know that one of you brought up the struggle of really being able to admit to yourself that you are down or that your moods are maybe um...here and there so to speak. It is so hard to hear from others that you don't seem like yourself, or to have people suggest you get treatment for depression. It can definitely feel almost like admitting that you aren't the same person you are before your diagnosis, which is a concern that was expressed in a comment on the prior post. While I don't believe the majority of us have lost the complete sense of ourselves, I would by lying if I said that I do feel like I've lost a piece of myself. Even if that small piece was just one more day of not knowing I would live the rest of my life with a chronic illness. 

Moving past the issue of admitting to ourselves that we need some sort of help, and accepting that maybe we're not okay trying to figure it all out on our own, there was some talk about anti-depressants along with therapy. In terms of anti-D's I am definitely all for the help that they have offered any of you guys, I think that if it's something that's working, then that is amazingly good and you should stick with it. I agree that we definitely need to let go of the shame or stigmas that we may have attached to these medications. For fucks sake, if something is truly benefiting you, then this is what's important. On that same line of thought however, I am a big proponent of therapy before meds, since this isn't the way things were handled when I was a "depressed teen." I think attempting to work through the root of the issue is important, and perhaps if the depression is more of a "biochemical" factor than medications are definitely necessary. I know I'm keeping my options open, and I'm looking forward to talking the shit out of my therapist!!


 
A New Low 10/11/2009
 


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So here I am  2:46am...awake as usual. Normally I don't get suckered into infomercials...don't get me wrong, I like to watch them, but I never call or order or anything like that. However tonight, I got suckered in by one. Luminess Air. Its an at home airbrush makeup system. Now this sounds like the ultimate cat lady purchase. However, I assure you it looked really effing cool. So I came here to the handy dandy Mac Book Pro and did some research on the cost and all that jazz and found out this little zinger costs about $180 bucks. Which to be totally honest, if it was as cool as they said it was...I would be all about paying for it.  And I sat here for about 5 seconds and thought...I need this. I need to feel pretty again.

And then it hit me.

In between figuring out how I could swing a totally random and unnecessary $180 impulse buy...and finding my credit card...I realized something.  My god...I feel this bad about myself right now. I have expressed how awful I feel about how I look lately and its has all culminated to this moment for me. Fucking infomercials with a promise of pretty. I feel so far out of my own skin these days. I feel so unlike myself, so like another fucking person trapped in this body that is so not mine...that I want to pay $180 to feel pretty again.  Now I don't know if this is just a staple of being a woman and feeling pressure to always be beautiful, or if this is really all about my health and how it makes me ugly. But I feel so...just..eh. I'm mad at myself for getting this down about how I look. I'm mad that I have to look this way. I'm mad that I'm getting suckered into infomercials with promises to make me feel good. I'm fucking mad that its gotten this bad. I'm mad at the drugs. I'm mad at the doctors. Damn it...I'm so fucking mad about the way things are right now.

I'm mad that I resort to my blog and just bitch to you all because I feel like so many people don't get how deeply rooted this shit is for me. No one understands what its like to look in the mirror and not see your own face. To not recognize yourself. To know that everyone who knows you, is thinking about how different you look all the time. To know that people are talking about you. To have a co-worker say to your face "Hey, do you know you're gaining weight?". Yes. Thank you. I am full aware.

I want my identity back. I want my face back. I want my life before all of this. I want sleep and confidence and to not worry about whether or not I'm going to end up in the hospital again. I don't want to have to worry about how soon I should make an appointment at the wig shop because my hair is still falling out. Or if I should just go balls to the wall and shave my head...and then if I shave my head will my boyfriend still like me. I want to be 24 years old and be normal. I want to not be sitting at my computer at 2:55am...crying about how shitty things are. I want to not be such a damn baby about things and keep on truckin' because you don't choose the hand you're dealt. You're just dealt.
 
The Big D 10/06/2009
 
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I read somewhere that aside from the initial grieving process that comes along with learning you have MS, the whole process can start right over each time you have a relapse or begin dealing with new symptoms for example. In the last few weeks (maybe a little longer, my concept of time lately is shot) I feel like I've been punched in the gut yet again by fear, anxiety, anger, sadness...all of the above and then some. I love being able to have days, even if they are few and far between, where it isn't so difficult to just step away from MS and just be. I suppose what I mean is the ability to move beyond negative feelings because of the way I physically feel. The good news is I'm pretty sure I'm not having a relapse, but the symptoms that I do have, seem to be ever present. Whether I am just have pseudo-exacerbation or maybe Avonex or depression are the culprit for how I'm feeling as of late, I do know that physically I haven't felt this crappy since my first and only official relapse last November. It feels like I'm starting all over again trying to come to terms with the fact that I am living with this thing for the rest of my life. I honestly believe that my physical abilities right now are probably the best they're ever gonna get from here on out. If I cannot be happy in the here and now, then I am officially screwed.  

A big issue for me which has come up lately is depression, and as much as I hate to admit not only to myself, but to anyone and everyone else, I am definitely dealing with an extended bout of some deep and dark stuff. I am worried that while MS can be the one of the culprits of depression, this is also a known side effect of Avonex. As many of you well understand however, it seems to be a toss up as to what's causing what. I suppose part of how I know that I'm knee deep in depression bullshit is the fact that I should be happy right now. I am honestly blessed with people and resources that help to keep me afloat. So why the hell can't I just snap out of it? I am thinking this is the fact that chemically or hormonally or whatever, I am dealing with something that is just a bit out of my control for the time being. I know the difference between having the blues, and just being totally disconnected. Lately I feel disconnected, and I am just not being able to make the pieces fit. I have another month and half until my next appointment with the specialist, and I'm only willing to give myself a few more weeks of trying to charge through this before I bring it up with the doctor. If things don't start looking up, I have decided I just may have to give anti-depressants one more go. The last time I was on the happy pills, was about ten years ago, roughly the same time I believe my MS symptoms quietly began to surface. I can say quite firmly that I did not have a good experience with either Prozac or Zoloft, and I hate to think about going through another experience like I had with either one of those drugs. I am legitimately scared of trying another anti-depressant, but I do realize that my quality of life these days is definitely worth the risk. 

I would be super happy to hear about any positive or negative experiences any of you may have had or are currently having, with anti-depressants. I have been so adamant on never again doing the drug thing to treat depression, but I'm just about tapped out in terms of fighting this on my own. 
 
 
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You may (or may not) have noticed I've been hiding. I've been hinting at some other larger issues that have been going on, ones I have/had no desire to talk about. But alas, this wouldn't be the place I want to create if I keep hiding from you. So lets just get it out there, rip the band-aid. I have now also been diagnosed with Colitis.Ew gross, embarrassing, currently searching for a rock to hide under. A big one that can cover me forever, hide my embarrassment, my face, and persevere the smallest bit of dignity I still have left.

I feel like I'm starting over again. New diagnosis, again diagnosed by a shitty doctor who hasn't told me a damn thing. All that I know is that I've spend the last 4 days in the hospital. All I know is that it feels like I'm dying and so far, no one has told me why.

I have a serious distaste for steroids...guess what the treatment for a Colitis attack is....steroids. I feel defeated. I'm angry again. And I'm pretty sure the steroids last night made me go a little crazy. I shit you not, I heard voices, and felt like I wasn't in control of my body. It was terrifying. I didn't sleep last night. I have finally been able to eat/drink without vomiting for the first time in over a week but I still feel too weak to do anything. I dont even have it within me to bitch about the two different E.R.s I was in, in the past week. Its hard to breathe.

I am being dramatic, yes I know.

I'm having a really hard time staying on top of the meds, 9 pills a day. Plus, the steroids for now. Am highly considering giving up on the trial. Just can't keep my life/ar appointments straight right now.

Will get back into blogging once I stop feeling sorry for myself.
 
 

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.

 
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 was reading a blog the other day, which lead me to another blog, then to an article, which I read and found an interesting MS symptom which I had never heard of.  Still following?! The article linked to this page on the the NMSS page about Emotional Changes with MS. I have done a lot of reading about the emotional effects of MS, mostly because there are times where I feel like I'm on crazy pills and I want something to blame it on, but also just because I like to be informed. Anyway, the new symptom I found was was Uncontrollable laughing and/or crying (also called the Pseudobulbar Affect). To be totally honest I sorta laughed out loud when I read it. What an interesting symptom.

I personally have never had any experience with this one, and as I said had never even heard of it, but since I first saw it, I have been seeing info about this everywhere. I was doing my usual clinical study search and found a local study in Ann Arbor that was testing a medication to treat this...crazy! The medication that was being tested was for MS as well as ALS, so I called them up to get some more information. No one answered but I thought the symptom was interesting as well as that it had a connection to ALS. So I guess if you're experiencing this symptom, I guess there are drugs available to treat it.

I often wonder how much we can blame MS for our emotional symptoms. I often feel that as a woman, my emotions get totally disregarded because the world wants to blame anything other than smiles and giggles on PMS. Anytime you have an emotion that's over the top, it can't possibly be a REAL emotion. I don't really think that my MS has effected my emotions, but even if it has I won't allow myself to blame it on the MS. I still feel like even if your MS changes your brain, or you have a raging case of PMS there needs to be a level of calm that you can find within yourself. No one responds to a crazy person.

So in the mean time you should check out the NMSS's page on the emotional changes in the brain after MS. I don't think that you can deny that there are changes that happen after a MS diagnosis, whether those changes are actual physical changes in the brain, or if they are just how we deal with our futures. So while some of us deal with bowel issues, constant crying, and/or depression...some of us get this sweet symptom:

Inappropriate Behavior
A very small proportion of people with MS exhibit inappropriate behavior such as sexual disinhibition. This type of behavior is thought to result in part from MS-related damage to the normal inhibitory functions of the brain. These behaviors may also reflect very poor judgment related to cognitive dysfunction caused by MS. Such behavior is generally beyond the control of the individual and is not a sign of moral weakness or sociopathic tendencies. The treatment of these problems is complex. The person with MS may require some form of psychiatric medication, perhaps along with psychotherapy. Family members will probably need supportive counseling since these behaviors are often shocking and disruptive. In some cases, the affected individual may require supervision to prevent the manifestation of the behaviors in question.


I would venture to say I've probably been inappropriate before and after my MS diagnosis, but damn...this one is good. Next time someone questions my "moral weakness" or "sexual disinhibition" I"ll just be like , "Hey I have MS, I'm coping best as I can..." Perhaps now I could tell some dead babies jokes without consequence....