A New Low 10/11/2009
 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. Spiritual Healing Homework 10/08/2009
 If you recall, Dr. Bill gave me some homework after my healing session with him. He told me to take some time for myself, create space, and think about the conflicts in my life. So last night I did just that. And I'm really conflicted over how it went. I've had these furniture pieces that I've been wanting to paint/refinish for a while and I really enjoy "crafting" if you will, so I decided to cancel dinner with a friend last night, sit in my garage and work on my projects. Do something that makes me happy. Dr. Bill had told me to disconnect and turn off my phone but shockingly enough I'm not all that popular so I decided to leave it on, besides people FLIP when you turn your phone off. I also usually work with the radio on and I decided this time to sit alone with my thoughts in the silence. Within the first 15 minutes I received 3 text messages from people who never text me and a phone call.... So I decided to turn the phone off. A small wave of ...I don't know, panic..flushed over me. WHAT IF SOMEONE CALLS AND ITS IMPORTANT? Clearly, I have a problem disconnecting. A problem creating space. So I left it off while I was outside and I painted and I sanded and I thought about stuff. And I don't really feel like I sorted anything out, which is totally fine. But I did leave my garage mad. I was pissed off. Sure, I thought about some stuff that upsets me, but for the most part I wasn't dwelling on bad things, but I was in a foul mood. WTF? This is supposed to be a calming exercise. It was supposed to help me sort shit out and I ended up...mad? How does one screw this up?! Spiritual Healers. A long entry. 10/06/2009
 I have talked previously about spiritual healing and how I have gone to see a Shaman and have them "heal" me. The woman that I went to see was a total nut job and I spent about and hour and like $60 trying not to laugh. I didn't go back. Well, the guy who referred me to her is now an official Shaman. I'd like to think I'm a pretty rational, logical human being, so naturally believing in spiritual healing is a little tough for me. But this person who does the healing is a family friend, and a totally normal, rational guy. Someone who functions in life like a real person, owns a business, is an ophthalmologist and a general cool person to be around. And he believes in this stuff. Hes been to Peru countless times to train with traditional Shamans and whatnot. Its hard to have someone like this in your life who is asking to help you and to keep denying them. Hes approached me countless times to see if I'd like his help/guidance or anything. And at this point...what do I have to lose? I'm on medications that are making me crazy, fat, ugly, and sicker in some senses. How can I say no? Adventures in prescription pain pills 09/25/2009
 Well it was bound to happen. I think for the first time ever, I have officially taken too many pain pills at once. No seriously. I'm pretty sure I'm tweekin'. This is a horrible feeling. I just keep staring off into nothing, my balance is off, my brain is all over the place, and I can't keep my eyes open. What I wouldn't give for a fucking nap right now. So my stomach pains yesterday were over-fucking-whelming so when I got home, I took a vicodin around 5 and it worked great, I felt better than I had the whole damn day. I laid on my couch watched TV and didn't want to die. I actually even fell asleep at a normal hour. Then it all went to shit. I woke up at 1:30 with excruciating joint pain. I'm not sure why this happens to me, but it did the last time after I got out of the hospital. Its like my knees and ankles just throb and I can't move them or stand on them or do anything without them just killing me. Its awful. Its so bad that it brings me to tears and for some reason only happens at night and when it wakes me up there is no going back to sleep. So in order to save my sanity, I took another vicodin. In the past they haven't really worked for this pain but I was desperate, and it had been about 6 hours which I'm pretty sure is when its ok to take another. So I sit on the couch in awful pain just waiting it out because I know that I can't even attempt to sleep. Around 3:30 it starts to finally go away. I can sleep again. Here is where I fucked up. I woke up again at around 4:30. The pain...it was back in full force. And my Guess who's back....in the hospital....again 09/22/2009
 Well big shocker. Since last Wednesday I have been camping out here again at the hospital...good news is that its not MS related, nor heart problems. Wahoo. However before we all start rejoicing with the peasants, lets take a step back and talk about how shitty it is that I'm here because its due to the colitis. Which as we all know, is seriously one of my favorite things to talk about. Remind me again, how much I hate my life. So I'm here. Have been here. Hate being here, however am becoming a regular here. Nurses know me, people go out of their way to visit me. We're regular old friends around here. Its like cheers except minus the liquor, fun, and Kirstie Alley. So I'm gonna talk about the colitis for a bit, just because I think the education aspect of it is important. I do apologize that because of my medical disasters this blog has branched out a bit from MS, but hey since my MS is in remission right now, its clearly more fun to talk about as my disease ridden asshole. Are We Disabled? 09/08/2009
 So I have struggled with this question often, mostly when its simply put on a form or something. Disabled...check yes or no. If only it were that easy. I have this inner battle whenever I see this question put so nonchalantly on a piece of paper or a radio box online. I want more than a yes or no. I want lines. I want a "maybe" option. I want a "sometimes" option. I want a "depends on what day and what freaking time you're talking to me" option. I feel like maybe this is a really easy question for some people, but for me, and Dana and others its really effing hard to make it so cut and dry. Perhaps they are specifically asking are you "legally" disabled, but if that was the case wouldn't it specify the "legal" part? Is disability reserved for those who carry handicapped parking permits? I suppose this just really comes down to what is disability? According to good old Wikipedia (which is totally trustworthy) Disability is defined by the Americans with Disabilities Act of 1990 as "a physical or mental impairment that substantially limits one or more major life activities. Well shit...who the fuck isn't disabled at sometime. Is disability in the mind of the beholder? There should be a scale of disability on forms like this. Either you check "no" or you get to rate your disability. I don't know. I just feel like, I never know what to say for those things. I also feel like its a catch 22 to answer it sometimes. I often find myself assessing to pros or cons to whatever answer I decide to give and whether or not that could be beneficial to me. At this point in my disease progression, I suppose I would say that I am not disabled. But am I more disabled than the other 24 yr olds I know...most definitely. However what does my disability look like? Its not in a wheel chair, its not on oxygen, and it damn sure isn't bed ridden. But instead its the stereotypical MS symptoms...the invisible disability. Numbness, tingling, fatigue, and the constant mental battles that involve toting around multiple auto-immune diseases (and now a fantastic mystery that caused my heart problems). What is disability to you? How do you answer these questions? Specialist fiasco 08/31/2009
 After encountering the worst neurologist during my diagnosis (his name is Mark Silverman out of Milford, by the way), through word of mouth I found an amazing doctor. I loved this man and the way he ran his practice and his amazing office staff. In fact never told anyone I knew about him because I didn't want him to get too busy. He was my little neurology secret. Then my perfect doctor decided he wanted to retire, which is a patients nightmare. His replacement didn't knock my socks off. He was nice, did his job but didn't really do it for me. So I decided that since I was "in between" doctors that now would be a great time to find a specialist. Who knew what a freakin chore that would be. I did a little but of research and found this website http://www.msneuroratings.com/, which I encourage ALL of you to use and update. It could be a great resource if more people use it. I also have a friend who sees a local neuro at the University of Michigan MS center, whos name is Dr. Irani. I work by this hospital and decided that U of M is pretty renowned and that he was the one I wanted to see. WELL...U of M lives up to its name and is snobby as ever. Not only did I have to have a referral, but there was also a process in which they could accept or deny you into their center for treatment. So from my files, they were going to decide if I was cool, or interesting, or messed up enough to see them? WTF. I was pretty pissed about this, how dare they consider denying me treatment...but then I realized...they can't treat everyone. I never found out what the grounds for denial were, but there is still a small part of me that thinks its pretty shitty. Not to mention that the wait time was over 3 months to get an appointment. Nevertheless, I still decided that I want to see this doctor so I send them all my files and information and waited. In the mean time I called 2 other specialist both out of Detroit, Dr. Elias and Dr. Khan. I had read a lot of info on Dr. Khan and decided that he knew his shit enough for me to get an appointment with him. When I called there it was a totally different experience, more like "ok what day can you come in". I made an appointment, 2 months out and called it a day. When I was scheduling all of this it was far before my recent medical disaster, and while I was in the hospital I got a letter from U of M telling me when my appointment to see Dr. Irani was. Nice of them to call and see if I had availability that day, but who am I kidding, I'm not busy. So I called Dr. Khan and scheduled them for the same day to knock them out at the same time and get all of my little MS errands done. Once I got the U of M appointment, I canceled the one with Dr. Elias, he was a 3rd string pick anyway, also looked like he could be old, and further perpetuated my fear of my doctors retiring. We are officially the worst bloggers ever... 08/24/2009
 Hi. Remember me? I'm Jackie, I run this website about MS, and we haven't talked in a while but I'm back now. Ironically enough, first blog back, I'm not going to talk about MS at all. If anyone still reads this blog...you know that I've been totally MIA now for about 2+ months. Yea, sorry about that. I did some writing while I was gone, however now that I go back and read what I wrote its possibly the most depressing shit you've ever read. So...instead of posting the "in the moment" stuff...I'm gonna post the aftermath. I spend 21 days out of the month of July in the hospital. I had 5 E.R. visits. 9 days in the Cardiac wing where I was easily the youngest patient by 50+ years, and 4 of those days in the Cardiac I.C.U. So heres the story, and I'm going to keep it short because...well I want to keep whatever readers I still have. Ok so its time to stop hiding. 07/06/2009
 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. This is what a clinical trial looks like 06/09/2009
 So I went to my app yesterday. I'm officially a lab rat. Today I was supposed to take my first pill. I would love to have a post-a-thon about how I've in the hours since, but because I'm SO awesome, I've already forgotten to take it. I'm off to a booming start. p.s. Yes I did notice that the date on the medication is expired. Update: While I would have liked to have thought I was more cultured, its been brought to my attention that the date is in the European format. Gee who woulda thunk that us Americans don't know everything. Crazy.    |
