Monthly Archives: October 2011

Once Again Waiting

So once again, my non-existant audience, I have neglected you. I apologize seven times. (anyone catch that refrence??)

Anyways, Ill go through general updates, because who wouldnt want to know more about my assorted maladies?

New GI Appointment: As noted in the last post, I had an appointment with a brand new, adult (scary) GI. The GI isnt scary, for the record, just the adult aspect… I like childrens hospitals still. Haters gonna hate. Anyway! He was very nice. He listened to what I was saying, and what I wanted, and came up with some good ideas. He is even willing to look into intestinal motility stuff, as it seems that may be a problem. It was pretty rushed, but he walked me to scheduling and explained everything he wanted done. I was then scheduled for a switch to a GJ tube, a GES, and a lactulose test. GJ switch was long due to their mistake, and wasnt especially pleasant (note to self, I am highly tolerant of versed and fentanyl), but it got done. Adjusting to feeds has been a slow process thus far, and likely will be for a while… especially since I keep forgetting to hook up to them. GES was okay. Had to eat oatmeal, isntead of the eggs they insisted on, and surprise surprise, it came out normal. I know it happens, even when there are motility problems, but still not reassuring.

EGID GI: As usual, correspondence is slow. Im clear to start amitryptaline, but am to watch my symptoms closely. Dont expect to hear from them til end of this week/beginning of next.

Neuro: Dont have my appointment for another monthish.. little less than that now (woohoo!). Had some new, somewhat alarming symptoms starting about a week ago, mama told me to go to the ER, so I did. They didnt see anything to crazy, so did labs, told me to see a specialist, and did a brain MRI. I now own pictures of my brain.

Cardio: Wasnt so happy with this appointment. Redid the EKG, and it looked alright, and they reconfirmed the POTS diagnosis… besides that they pretty much wrote me off and told me they couldnt help me. They also decided not to rule out myopathy, despite a chance of it (small chance, but a chance). Getting scheduled to see my dad’s cardiologist at home, may get bumped and just see someone in Cinci (speaking of…)

New stuff!: So Ill go back a little. My little sister (11) has been having EGID like symptoms. My mom took her to through the general process in Chi, but they came up with about nothing, so she put in a call to our old buddies down at CCED (Cincinatti Center for Eosinophilic Disorders). As a preface, I went to Cinci when I was 12, after I super failed the top 8 elimination diet and my local GI decided that I was too complex a case to handle. I was treated by Dr. P for about 6 years, though treatment is a lofty word here. He was adamant I treat with flovent, and I didnt like that idea so much. Flovent has never helped me and I react funny to it. So, after my appointment at the beginning of Sr. Year, I decided to look elsewhere. Checked out Childrens Memorial Eos Clinic, but they told me that EGE/EC dont exist.. yeah, okay. So then I waited til I decided where I was going to school, and thats how I would up going to Denver clinic. I like them a lot, but they havent been especially helpful in my case, once they got me the feeding tube—
Back on topic. Dr P and my mom wound up talking about me at the appointment as well. Both my sister and I will be tested for mitochondrial disease. He is very confident that I have it, thinks my sister may too. Cinci is apparently just starting to recognize and see it. Favorite quote regarding it and my case: “As doctors, we have to look for horses, not zebras. More than likely, people have the more common ailment. On the other hand, when it looks like a duck, and quacks like a duck…”
Based on my mom’s discussion with him, it sounds like they will be running a ton of tests on me, and really try to understand the full spectrum of what is going on, in some part because I am an interesting case for them, given my issues and my long history with them already. Im pateintly waiting for them to call about scheduling (patient is not working so well). Its looking like Ill be there in January, unless he decides to open up something in December. Im expecting January… Missing a week of classes being at a hospital across the country is a great way to make a good impression on new professors, right? (Yet another update… May be going to Cleavland clinic for testing… Dr P called a collegue there, so they could do fresh muscle biopsy. Scheduling once those two chat)

 

Thats the jist of the medical stuff. In other news, school has been tough this semester. I wound up withdrawing from two classes to make the load a little more manageable, given all the class Ive missed for appointments. I have my schedule for next semester set up, though, and Im nerding out a bit. Im going to take ornithology, principles of animal behavior, gen ecology, then either an honors class or a social science. The three that are set, though, are just T/R classes, which makes it even better.

Hmm what else… I dont think Ive posted this part, but I was promoted to Sr. Route Setter and am a Competition Manager at the climbing wall at school 🙂 Its pretty cool. I enjoy it for the most part. The whole Sr. Setter deal is amusing, too, as I am very much the youngest of the group.

Despite the whole no energy, new symptoms, not feeling well thing, life isnt too bad. Its seeming like its officially winter here in Laridise, and Im very happy in my puffy jacket. Maybe my optimism is stemming from a pretty okay day, the prospect of answers… Hopefully it sticks around.

….

“My theory has always been, that if we are to dream, the flatteries of hope are as cheap, and pleasanter, than the gloom of despair.” -Thomas Jefferson

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Filed under Fall 2011

Frustration

Its 7:30 pm and I am utterly exhausted. Ive been ready to go back to bed since about 20 minutes after I got up. I walked to the bus, pausing multiple times as I retched, wondering if it would be better if I could just vomit. Sat through classes because I knew I had to be there. Ate a little more later, knowing it would wind up the same way.
Im not that sick. I dont look like Im sick. I hear it most days. But Im miserable. I cant keep this going how its going, eating and feeling horrible, not eating and feeling even more weak, being exhausted the whole time, being scared of the new symptoms that are popping up… or not, because maybe Im just insane…. Im hitting a dead end, and I dont know where Ill turn if things dont improve.

Heres to hoping tomorrows appointment is a step in the right direction.

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