Wednesday, March 13, 2013

Hope in the form of an orange hotel room

I have been anxiously, yet patiently at the same time, waiting for around 4 months now for spring break so that I could see some new docs to try to get some real answers about my ever worsening, complex stupid body and medical conditions. Even though I am still actively pursuing my master's in dietetics at this point I'm not planning on working in the field any time soon, because at this point the main thing I'm learning in school is that I won't be able to work in the foreseeable future. Between going to class for a measly 5 hours a day and sleeping in between every class, to pushing through clinicals and being so tired I'm literally falling asleep there, to as soon as I get home from anything immediately going to bed and laying there and can't move because my body is so overstimulated and messed up from over processing all day, it's just not possible to think I could hold down, let alone get hired for a job in the field. In addition, in the past 3 weeks I've had 6 doctors appointments, 1 infusion (that lasts 4 hours), 1 4 hour test, 2 days of out of town doctor's appointments included, and almost all days where I felt like I was going to die and didn't want to get out of bed but did anyway so I didn't get kicked out of the program, and 1 ER visit--who is gonna hire that, for real. But I digress, back to the doctor appointment marathon.
My cardiologist has basically been like for the past couple of months, "well, I know you have dysautonomia, but I don't know what to do about it. I could send you to Mayo or Cleveland Clinic, but beyond that we can just keep you on your beta blocker, compression stockings, salt, IV's, etc; but I don't know how to stop it." Because of this, and with the help of my support group, I found out neurologists can also be vital in treating this condition. I saw one in Terre Haute and they didn't know what to do. I found out there is one in Chicago that is supposed to be really good, but I have Medicaid and they don't cover out of state docs. I called him, just to inquire what it would cost to see him if I payed cash and it was $620 for one appointment, which is near impossible for me. So, in a fit of desperation I started googling neurologist, dysautonomia, Indiana and any combination there of. I finally kept getting lots of hits for IU Health/IU Med Center, which is the closest thing Indiana has to Mayo, Cleveland, Vanderbilt, Rush, etc. So I called a neurologist office and asked the receptionist if any of the docs there had heard of dysautonomia or autonomic dysfunction and they gave me the name of this doc. So I made an appointment for spring break (4 months away), prayed, and continued on with my painful, tiring life. Around the same time, I started having stomach issues again, which I think I've mentioned here before already. The GI I was seeing scoped me again, found nothing, did a CT scan again, found nothing, asked me about my diet, and found nothing. So I asked to be referred to IU and fired him. Got an appointment for spring break (4 months away with not eating properly, being nauseous 24/7, and having severe sharp stomach pains every time I forced myself to eat for several hours later), prayed, and continued on with my painful, tiring life.
Fast forward 4 long months. 4 long months where I'm trying to go to school, do my best at clinicals, work on getting my thesis ready for the IRB committee so I can do my study in the summer, working on projects, etc. I'm exhausted, moody, in pain all the time, and come home almost every day and say I don't know why I'm trying to do this anymore, it's not worth it. Then all the appointments come. I saw the cardiologist again 2 weeks ago. He is weaning me off the Beta Blocker and putting me on a calcium channel blocker (which I've already started, but am not all the way off the beta blocker yet). He also prescribed me prescription strength compression stockings, which I'm going to go get fitted for tomorrow hopefully. He also was going to write me a standing order of IV fluids so I don't have to beg the ER for fluids, but he only has privileges in Indianapolis and I'm not driving 2 hours each way to get fluids, so he asked me to ask my PCP and he would talk to them if necessary. He is also trying to get me into Mayo as a possible "indigent patient" so I wouldn't have to pay for it, if I decided to go.
Last Friday, a week and a half after the cardiologist I had an appointment with my super rheumy. He is just as frustrated with all of this as I am. He doesn't know why I have it, he wants me to be able to wake up one day and run again. He wants me to be healed, but knows realistically it's probably not happening. He is supportive, yet logical. I told him about the cardiologist asking about fluids and immediately had a nurse get on the phone with my cardiologist and the insurance company and start the pre-approval process of getting fluids at his office during my remicade infusions and more if necessary. He changed up some of my meds. He listened, which is really rare. He printed out all my labs for the past year to bring with me to the specialists this week and said he wanted me to call him once I had heard what they had to say so he could be informed. We are still waiting on the insurance company approval to come back for the fluids, but at least we are on the right track there. We have made an appointment 3 months from now and promises of constant communication if necessary, as usual.
Monday (3 days ago) was the long awaited neurologist appointment with the neuro that had at least "heard of dysautonomia". Well, God was faithful and he had definitely heard of it. He knew how it was treated. He knew what meds to use. He knew what questions to ask before I could hint at them. He asked me about what I described as painful convulsions and muscle spasms. He came up with some meds to try to reduce or eliminate my "convulsions". I also asked him about some "fainting" I've had that is strange. I'm sitting there carrying on a conversation, being normal, lose consciousness (but can sometimes hear, I'm just paralyzed really, sometimes I'm completely gone though) for about 30 seconds each time, but it happens 3-7 times in a row usually. Sometimes, I also wake up and can't move for a while like I'm paralyzed, but can see and hear and talk, just can't move. He said these could be faints, could be my autonomic nervous system misbehaving, or could be seizures. He said he didn't want to say they were seizures though because I could lose my license from that, and it doesn't happen when I'm driving so we were going to put me on a med to hopefully stop the "events" and if they don't stop by the next time I see him we will have to evaluate further. My favorite part of the appointment is when I knew he completely understood and this would be a good doc. I asked him what labs and tests he thought he was going to run towards the end of the appointment because I like to mentally prepare myself for them. He said, "why would I order any tests, you've had general labs recently and any test I will run will come back normal because you have an autonomic nervous system disorder, those don't show up on labs, they just make you made because everything comes back normal." Which, if you know anything about dysautonomia, that is the truest truth you will ever hear and is why, oftentimes, no one believes us because every test comes back normal. After I saw him, my hope was even more confirmed when I got my tired, achy body to the hotel room in the next town where my next days tests were and discovered my hotel room was orange. And if you couldn't tell from my blog background, that's my favorite color. I knew that the next day would be good as well. I went to bed early and headed to the other hospital (same system just different location) for my next tests.
I had to be at the hospital at 9, had my car valeted, got lost a couple of times and finally found the place where my test was. I was having a gastric emptying study to see if I was having motility issues in my stomach to find out why the pain was every time I ate and why I was nauseous all the time. If you've never heard of the test, this is how it goes. You eat a gigantic pile of scrambled eggs (egg beaters, not real ones either) in 10 minutes with radioactive dye in them and get one glass of water. You aren't allowed to eat or drink from midnight until the end of the test. Therefore, I was without fluids for a full 13.5 hours until the test was over, which is disastrous for someone with dysautonomia. Anyways, after you eat the eggs they scan your front and back at 0 minutes, 30 minutes, 1 hour, 2 hours, and 4 hours to see where the food is in your GI Tract and ask you about your pain and how you feel before the scan while the test is going on. Coincidentally, or not, every time they asked me about where my pain was or where my nausea was centered BEFORE they scanned me, once they scanned me they found that the food was exactly in the place where I was feeling the sharp stabbing pains. I've never had this test done before, so I wouldn't know where the food was supposed to be at one time so they found it very interesting and correlative that the pain was exactly where the food was every time. This was kind of proving that there was something, seemingly, wrong with me since the pain was correlating with food placement at least. Unfortunately, the food was moving at the right rate, so that was not the explanation. After that test, I went to the GI doc appointment.
At first, I didn't think I would like him. But it quickly turned for the better. He ended up knowing more about dysautonomia and how it affects digestion than any doc that I've ever met. He spent an hour and a half with me, asking me questions not only about my stomach, but also about my autonomic nervous system. I also carry around a medical binder with me to all my new appointments with data about my health, how I feel, doctor print outs from each visit, and labs. He took my whole binder and copied it so he could review it. He also asked for all my current physicians phone numbers so he can call them all and get on the same page with all of them and make sure they all agree with treatment plans for the future. We got to the reason why I was there and basically said the gastric emptying study was normal in terms of speed, but it was interesting in terms of me feeling the pain exactly where the food was and said that was insightful. He said I'm probably nauseous 24/7 because the stomach is right in front of the vagus nerve (which is the main nerve affected in dysautonomia), almost attached, and can give signals to the brain to be nauseous and full and on and on. So basically, my stomach issues are all dysautonomia's fault, surprise, surprise. Also, he said since the pain is happening where the food is, it could be pain because everything in my body is so over reactive compared to a normal person from the dysautonomia and fibromyalgia so that's why it hurts. This doesn't make it better, but at least it's an answer as to why it hurts, instead of "I don't know, just deal with it," like the other GI I fired said. To deal with the nausea he prescribed me prescription grade ginger (ya know how people drink ginger ale when they're nauseous, well, I'm taking like the equivalent of 500 ginger ale's in a pill every day now) and a nausea med called Kytril. Well, unfortunately the Kytril is $2000 a month, ya you read that right, there is no decimal problem there, and that is for the generic and the insurance won't cover it since there are meds that do the same thing much cheaper. So currently, my GI doc is talking with insurance to convince them I need it. The idea is if we can calm down the nausea enough, we can calm down the nerves in the GI tract and the pain will be less. If we can't do that, we will talk about a gastric pacemaker which would be implanted in my stomach to stimulate my stomach to tell my brain she's not really sick, she just thinks she is so I can eat properly and get nutrition back into me and get used to eating again.
So I think that is about all for now. Basically we don't know how to fix anything, but we know how to help alleviate some of the symptoms. And it has been confirmed on paper and in person by at least 3 docs in a week, sort of 4, that I am not a whack job, I do have an autonomic nervous system disorder, it sucks, and we know that but we've got to deal with what we can when we can and leave the rest up to God. For now, I'm gonna try the new drugs and try to finish up this degree with some sort of sanity left. This has been plenty of a long enough update. Sorry it's so long, but people wanted to know what was going on, so here it is, for the most part spelled out. Thanks for reading, caring, and praying. Love to y'all :)