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.
“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