Monthly Archives: November 2011

Home Again, Home Again.

As Im sure you have inferred, my non existant audience, I am back home this weekend for Thanksgiving. I once again do not really have many updates for you, besides my last couple appointments and the like. Ill also probably wind up going through the basic run down of being thankful, etc, before the end, because thats why Im home, right? Thats your warning.

We’ll go through the medical updates first.
Last week I had my appointments. They were much less than I would have hoped.
At first I thought neuro would be really helpful. I was in their office for close to 2.5 hours, and they were doing all sorts of in office tests (writing, drawing, block stacking, etc). He took a careful history, asked lots of questions… Then after a while, the real doctor came in. As it turns out, the person I spent almost all the time with was a student, not an actual doctor. I wouldnt have minded so much if they had decided to keep looking, isntead of writing me off and telling me my symptoms were a side effect of depression.

This is a great point for a tangent/rant thing. Subject: depression and chronic illnesses.
Many people with chronic illness, at one point or another, have issues with depression. We do recognize this. We also know that often times, during times of depression, symptoms can get worse, including symptoms of the chronic illness and the symptoms more associated with depression. In fact many of us have a pretty good idea of when we are depressed, what kind of symptom exacerbation it is causing, and have ways to cope. This DOES NOT MEAN that depression is the CAUSE of the symptoms, nor is it the cause of the chronic illness itself. To quote one of the psychiatrists I have talked to: “Given your genes and your current situation, I would not believe you if you told me you werent at all depressed”. (He also told me that having a chronic illness is a mourning experience. I like that one too.)

Back on subject… When I walked into that appointment, I was actually feeling like I was in the best state I had been in for a while, mental health wise. I was feeling optimistic that these doctors could help give me some answers, was feeling okay with some of the potential tests I was expecting them to order, wasnt stressing… No, I didnt feel well at all, but it was managable. I was even honest about my family history as well as my own, and told them that I was feeling really stable at that moment in time. Apparently, my word meant very little to them, as I looked like I was really “down”.
That was what really upset me. Im used to getting the “Well, at least you look healthy!” ‘s, and the double takes with my record with new doctors, not them telling me that my worries and issues are “just depression” because of my history and how I looked… especially since I assumed I wasnt looking too bad, given my decently good mood. Maybe that doctor just isnt used to meeting with co morbid patients? Isnt used to being around someone who spends every day feeling ill? I dont know. Im trying not to let it get to me.

And yet another tangent. Maybe this is just me, but especially if I dont know you that well, dont base your judgement off of how I look. Yes, sometimes when I look miserable, I am miserable, and look content and actually am, but not always. Its better to not even comment on appearances, its not something I have much control over, and even the best intentions can wind up feeling sour. I dont want to know how well I look when I feel horrible and fought to even leave bed that morning, nor do I want to know when I did manage to get out but look horrible. </rant>

Anyway. There were a few upsides to that appointment, one of which being a confirmation that I need to be re-evaluated by cardio. During my appointment, my collected heart rates were as follows: 87, 110, 75, 60, 105. All in similar positions, within a two hour period. They also wonder if the tingling is vascular. Hopefully that gets going before long.

GI was not especially helpful, but it did help me figure out what I would be doing, doctor wise. First, the good news. I will never have to take entocort again! wooooooohooo! Besides that, it sounds like this dude will now be my ‘local’ GI, and he wants to work with Cinci for my care. As it turns out, he even has experience with EGE/EC! Thats craziness right there. The less good news. Were not really doing anything right now for the motility issues. My GES came back on the very very slow end of normal this time around (doesnt negate the GP diagnosis, but it does show that my stomach is functional at times… a very good thing). Because of this and the pain I have been having with J feeds, he thinks I have intestinal involvement, meaning a true prokinetic that would target the stomach wouldnt do too much. We both know my tract is inflamed right now, and because of the entocort superfail, we still cant tell if its from eos or not. So, its back to the waiting game.

———-

That signals the end of the medical crap.

It has been really nice to be home the last few days. I have gotten better at balancing my time between climbing family and blood family, it seems. While I did spend 4 hours climbing, followed by 4 hours of sitting in Rock Bottom on wednesday, I spent the evening after that hangin out with my brothers (we had a pokemon stadium tournament. I put up a valiant effort, but did not find myself victorious. Stupid Tangela.)
I love being able to spend time with both, and it does, as always, make me wish I had more time. But I guess thats the case for everything. I am trying to appreciate the time I do have, and know it wont be the last.
This year, despite everything that is becoming more difficult, I have a lot to be thankful for. I am so lucky to have a loving, supportive family that understands how I am….. for great friends who are essentially family, who I love and love being with when I can be….. for having doctors who believe what I am saying and who are fighting for me….. for the support groups and Eos Community I am so glad to be apart of….. for what health I do have, and for being here….. for climbing….. for being able to study what I love….. for all the opportunities I have been given so far….. for comfy beds and warm jackets…… even you my non-existant audience. I am thankful for my halfway decent writing abilities helping me spread awareness and share my experience in hopes to help someone, anyone.

I take off early tomorrow morning. Hopefully there will be a post before too long… I mean, I will be procrastinating hard core in the next couple weeks.

Until then….

What I see in Nature is a magnificent structure that we can comprehend only very imperfectly, and that must fill a thinking person with a feeling of “humility.” This is a genuinely religious feeling that has nothing to do with mysticism.” -Einstein

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Filed under Fall 2011

One of those Kitchen Table days…

My dear non-existant audience, I do not want to write about corn any longer. This is procrastination at its finest.

I really have nothing that exciting to write about. I have basically spent the last week studying, sleeping, or working. That said, we put on a pretty good FNBS this Friday, if I do say so myself. Not quite the turn out of last comp, but we had over 50 competitors and even pulled off a Dyno comp (without busting any of the new crap holds!). It was a long couple days getting it together… 20 hours of work on my part, but was a good time none the less.

In other news, appointments are upon me. (You didnt really think I would make it even half way through a post without talking about medical crap, did you?) I see neuro on thursday and GI on friday. Thanks to my lovely mother, I get to stay in a hotel in Denver overnight so that I dont have to drive back and forth. Saves my lovely car some miles, too. Im a little nervous about the neuro appointment, just because it is new territory for me. Im trying not to think about it that much though. I figure I just have to speak up for myself and make sure things get looked into. As far as GI, thats old news. Interested to see what the next step is, since I so obviously failed the entocort attempt.

I also have another point of nerves… Im considering audtioning for the Vagina Monologues here at school… While not a subject I normally would want to be on stage talking about, I really do miss regular old Neuqua Monologue show, and unless we set up another poetry slam, Im guessing there wont be another opportunity to be on stage for a while. The flip side, though, is that I know the director already, form Beginning Acting. Shes a total jerk face (for jerk face, read long list of expletives). I really dislike her. A lot. She told me, because I was asking to make up work from when I was sick, that I was the disgrace of the Honors Program. I definitely spent time walking near the Fine Arts building when I had my NG tube in hopes of making her feel guilty (I do have scruples, I promise… but she was really mean).

And another tangent to that, I really want to get writing again. I started having some good words walking to my genetics exam last week. I was going to be studying on the bus, but upon opening my backpack, I didnt find my notebook, but rather 2 quick draws, an ATC, and a grigri. Awesome for studying. Anyway! The only downside is that I didnt have time to get anything written down, as I was walking to an exam, and what I did come up with was rather cliche… one of those “This is for…” sort of poems, but in a medical sort of sense. Some lines like: This is for the ones I can talk to when I dont know when to be upset, laugh, or cry because I was told for the fifth time today “At least you look healthy…” And they not only know exactly how I feel, but know exactly what to say, spinning a text my way just saying “We so pretty” Smiley face. The ones I can have discussions with about withholding my urges to tell everyone on facebook complaining of their cold or their flu to just suck it up, because theyll go back to their normal healthy lives days after, while we sit here in our normal state of pain and discomfort, For the support group mom’s I ask advice like Id ask my own mother, the kids I think of as siblings, the strongest siblings I have ever had, the family I find in those who understand….
Not that good, I know. Maybe something will come to me. Maybe it wont. The brain fog has been heavy lately, and Im hoping cooler temps will start getting it to dissipate.

I dont know why writing is so helpful in sorting things out. I should really probably be going to bed about now, so that I wont die tomorrow trying to get to Plant Bio… but Im compelled to stay. Id love to get into some philosophical discussion with myself and really get my brain moving, but I honestly dont know how much I can do.

Ill end with a story.

One of the best nights I have ever had was between my Junior and Senior years of high school. I was on my annual trip to Vermont, to visit one of my best friends. I have an amazing skill of having best friends that live vast distances from me… I guess my being so resistant to change helps me keep friends close in those circumstances. It just so happened that my other best friend was on a cross country college visiting road trip during my visit, and wound up visiting University of Vermont about half way through my stay. After a university tour in the morning, we wound up, all three of us, my two best friends who had never met, walking along the lake. That night we went to a Lake Monsters baseball game. Afterwards, we went back to have a bonfire, but realized we were still too close to people to see the stars like we wanted too. We wound up driving to an elementary school and playing on the playground, talking, listening to music, star gazing, and absorbing every moment of feeling so alive. We wound up laying across the top of the monkey bars, watching for shooting stars and soaking up the Milky Way. The field across from us was full of lightning bugs, and I was so content with my place in the universe. I felt so loved, so comfortable, so happy in a place I had never been, with people I cannot separate myself from.
Then, wham. I went to get off the monkey bars by dropping down backwards, hanging by my knees. As it turns out, there was a big metal bar right where my head wound up. Even through the couple tears I unwittingly shed, I still felt the love, though.

I always have a hard time going back to memories like that. It either winds up giving me a reason to keep pushing, or gets me stuck in a cycle of nostalgia, wishing to leave now and to sit back in those times where I felt so alive and so okay with that. Back when, even though I was sick, I could focus on school or sports or my latest social anxieties, when I wasnt so responsible for myself, when everything wasnt in my hands, when I had a safety net around me constantly, instead of having a 1000 mile drop. Sometimes I just want to go back to when I wasnt so aware.

 

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“If someone told me that I could live my life again free of depression provided I was willing to give up the gifts depression has given me–the depth of awareness, the expanded consciousness, the increased sensitivity, the awareness of limitation, the tenderness of love, the meaning of friendship, the apreciation of life, the joy of a passionate heart–I would say, ‘This is a Faustian bargain! Give me my depressions. Let the darkness descend. But do not take away the gifts that depression, with the help of some unseen hand, has dredged up from the deep ocean of my soul and strewn along the shores of my life. I can endure darkness if I must; but I cannot live without these gifts. I cannot live without my soul.”” -Elkins

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Filed under Fall 2011