So I actually started this blog post a few days ago. It was up beat and positive and excited to share all the fun stuff that has been happening. And I will still post that one when I finish it, but for now, I have other things that are more frustrating right now than the other events are exciting =\
My symptoms have started to get worse again, and I'm at the point where if I don't try to sort things out now, I may be on the road to crashing hard... A few weeks back I went to the second annual Dysautonomia International conference. It was great! (Post coming about this specifically.) At the conference, I met a doctor who I thought would be the perfect doctor to schedule an appointment with and try to get in to see...she is primarily a GI doctor but also deals a lot with autonomic dysfunction issues and orthostatic intolerance. Yay! Unfortunately, she can only see pediatrics...of course...She recommended that I try to get in to see her husband who is a neurologist that specialized in orthostatic intolerance and other symptoms linked to that. Yay! So I figured I would give that a try.
I don't know if I've ever mentioned it on this blog, but I HATE GOING TO DOCTORS!! New doctors especially, but I just dislike seeing medical people. It's not that I'm in denial that anything is wrong (ok, maybe to some extent I think that if I don't schedule appointments then I can't possibly be feeling that bad...) but that I'm tired to being told that they don't know what to do or that there's nothing wrong or that I'm too healthy and to come back when I can't walk anymore (yep, actually been told that by a doctor)...That being said, I do have a few doctors that are fantastic! They have been with me for years and seen the progression of my symptoms and have been willing to try different medications or write referrals or just do anything they can to help me. There's just a couple problems... 1) They are all back near my parents and I'm 6 hours away (although as my mom so subtly points out, I could move back home and solve that problem =P) and 2) they are the first to admit they really don't know what to do to help me other than help me get in to see a specialist.
And there's the next problem...everyone is a specialist!!! Which is great when there's only 1 issue...if you have stomach problems, you see a stomach doctor; if you are having dizziness and passing out, you see a neurologist; if you're breaking out in hives and not breathing, you see an allergist. But what about when there are multiple problems??? Each doctor only looks at the symptoms that are relevant to his specialty and diagnoses some random disease that explains what he is familiar with...but is that really what's going on?? I'm not going to be convinced that I've (plus all the other people in the same boat as I am) all of a sudden developed all these random rare diseases...that's why they are rare...statistically, there's a 1 in whatever chance of getting some disease, and an even smaller chance of having 2 diseases, and we could keep going, but you get the point...statistically, this just doesn't make sense. Shouldn't someone be noticing this pattern and saying "Wait a minute! We've got all these patients that are getting 3, 4, 5+ diagnoses of supposedly random conditions. Plus, all these patients seem to be getting a lot of the same diagnoses...maybe there is some underlying cause?" LIGHTBULB moment if I ever saw one...
And that's where the doctors at the conference fit in. They are among the few that are actually taking a step back and trying to see what is actually the underlying cause and not just being satisfied with treating symptoms. It was refreshing to hear doctors say "I don't know" instead of making up some answer when it was clear they really didn't know. The doctors at the conference were willing to say that there was still a lot of research being done, but at least they care and are trying to do what they can with the information they have now.
Anyway, the one doctor recommended I try to get in to see her husband and also gave me the name of another doctor that could work as well. So I spent a week or so collecting records and paperwork and faxing forms all over the east coast trying to get various doctors to send my records. Today I heard back from the doctors staff to schedule, and I was excited! Until they told me he is no longer accepting new patients...they offered me an appointment with one of his colleagues, but it wasn't until I realized I wasn't actually going to be able to see him that I realized how much I had been hoping this would work.
I feel like on a day-to-day basis I do a decent job of managing my symptoms and making everything look normal to the people I work with and my professors and students. But my family and closest friends see the ups and downs that are happening all too often now. I try to keep a good attitude and realize that everything has a purpose in life. I look back on previous posts and journals and prayers that God has answered. I remind myself of His faithfulness regardless of how I feel or what the circumstances are. I pull out verses and encouraging notes that I've been given over the years. But sometimes it just feels like too much. Sometimes I'm just overwhelmingly disappointed. I trust that God is in control. I know He won't give me more than I can handle and is with me every step of the way, but that doesn't mean that some days, like today, I wish it didn't have to be this way.
Now that I've had some time to get over the initial disappointment, I'm okay. I DO believe God is in control and maybe this is His way of directing me to a doctor that might be even better for me in my situation. I don't know why last week there were appointments available and this week he's not taking new patients...but I won't let this keep me from pursuing finding the right doctor to help me. As much as I dislike doctors, I'm not just going for me. I'm going for my family who is walking this road with me and cannot do anything but be there. More than anything I hate that my struggles have to effect the people I am closest with. As much as I just want to check out and pretend everything is okay, I've realized in the past few months that it doesn't make things better (duh). But that as hard as it is for me to struggle with these things on a daily basis, my family has to watch...and that's why I WILL NOT allow myself to shrink away anymore and pretend things are fine. It's not fair to them. They have been there for me when I've needed them the most, so I want to do what I can on my end to keep them from effecting them any more than it already has.
But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair.
2 Corinthians 4:7-8