A Week With My Valentine
Health Update: Travis's worst symptoms lately are constant and complete fatigue, inability to get to sleep, and the brain fog (can't think/comprehend/communicate well). We think the new medication is helping. The dystonia isn't as constant, mostly more at night or triggered by stress/anxiety. The emergency med "Klonopin" has saved Travis multiple times when the chocking comes.
We have been overanxious about hearing back on the test results. After waiting 3 weeks, we contacted the nurse asking if they have heard anything yet. She responded with a message, "In regards to the Huntington's and Wilson's tests, they require a consent form be signed by you and Dr. Renner. We can do this likely at your next visit; however, the tests won't be able to be drawn until we have verified that your insurance is willing to pay the costs. If they are unwilling to pay the costs, we can get an out of pocket cost amount that you may be responsible for if you choose to proceed." We had a lot of questions when we read the message! He already had his blood drawn for the test, and Dr. Renner wanted the next appt so that we can review the results together. After about a week of trying to contact them and verifying with insurance, I finally got ahold of someone in the doctor's office that was willing to work through all the miscommunication, and she emailed me the form, I had Travis sign it, then she faxed it to the lab. She verified with insurance and within an hour, she said the test was "in process." Thank goodness for her! Dr. Renner also decided that no matter what the test results are, he still wants to do a spinal tap and run more tests, so the follow up appointment became a spinal tap appt.
On Friday afternoon, we had the appt for the spinal tap, so you can imagine how uneasy Travis was all week. The last spinal tap, he said it felt like a car hit him in the small of his back. He got a double dose of Valium right before the appointment. So the combination of Valium and his lack of sleep, he looked like a swaying zombie. When the doctor came in, he asked me to help hold Travis up during the spinal tap so that he doesn't fall over. At least he wasn't twitching right? The spinal tap went well, in fact, Dr. Renner asked Travis how he was doing as he was finishing up with the last vial of spinal fluid, and Travis said, "I'm good." Dr. Renner replied, "Good to hear. I am just finishing up." Travis was so surprised and said, "Wow. I thought you just started!"
After the spinal tap, the doctor had us wait to get blood drawn too. After waiting about 45 minutes, he came back in to explain that the tests he wants done are not common and they are having a hard time finding the codes for them and figuring out which labs do them. They are mostly to test for "post infectious autoimmune diseases." We asked a lot of questions and after he left, we waited another 45 minutes for the nurse to say that we need to get the blood drawn at the University Hospital. So, as the nurse put it, we went "off-roading" with Travis in a wheelchair across to the next building down a few floors. The nurse left us at this point, so we waited for the lab to get ready for us. When they called him back, I had a hard time pushing the wheel chair through the tight hallway and may have rammed Travis's left foot into the door (don't tell him, he was still on Valium). The list of blood tests was SO LONG. There were 11 tubes to fill up! The phlebotomist put a butterfly on Trav's left arm and couldn't get any blood out, so he was moving it around inside Travis's arm! Travis was cringing and I was mad. Eventually he moved to Travis's right arm and that worked out. After the 7th or 8th tube of blood, I slowly moved back to the wall. Travis looked up at me, "Are you okay?" I replied, "Just a little lightheaded." Haha. Just like Travis to be worried about me, while they are taking all his blood.
Dr. Renner says we should know all the results including Huntington's and Wilson's in 2 weeks. He gave us his email and told us to email in 7 days asking about results.
Needless to say, I have researched about post-infectious autoimmune diseases. There isn't even a Wiki article on it, so I am still searching. I haven't found much info. This article has been most helpful so far.
Why Travis is My Hero Today: Right now, the stress of life has made me over-serious about everything. Every day that passes it is harder for me to be happy as I watch his health deteriorate. Yet, he finds a way to keep me going... keep me smiling. How? How can he do that? He makes me laugh. He makes me laugh all the time. Just last night, we were both sooooo exhausted. He started playing THE FUNNIEST SONG as we were laying down to go to sleep. He even started singing it to me. Laughter is necessary to get through this difficult week. I love his science jokes, his not-so-funny puns, his "dad" jokes, his singing, and his memes that he sends me while I am working. I love how he makes fun of the romantic comedies that I love to watch. I love how he vents with me when I am frustrated with situations at school. I love that we play Dr. Mario on N64 and trash talk each other. He finds a way to make me laugh and forget the dark abyss we are stuck in. Only a hero can do that. He is most definitely my hero (and valentine) today.
Inspiration: I read "Like a Broken Vessel" this morning with my friend Lena on Skype. Definitely worth reading if you have time.
How can you help us? Please contact us. Stop by our apartment to say hi. Text me your favorite quote, or funny meme, or just let me know how you are doing. Help me feel like we are still normal and not just hermits in a basement. Travis doesn't have a lot of energy to go do things, but you could definitely come visit us. We love you all!
We have been overanxious about hearing back on the test results. After waiting 3 weeks, we contacted the nurse asking if they have heard anything yet. She responded with a message, "In regards to the Huntington's and Wilson's tests, they require a consent form be signed by you and Dr. Renner. We can do this likely at your next visit; however, the tests won't be able to be drawn until we have verified that your insurance is willing to pay the costs. If they are unwilling to pay the costs, we can get an out of pocket cost amount that you may be responsible for if you choose to proceed." We had a lot of questions when we read the message! He already had his blood drawn for the test, and Dr. Renner wanted the next appt so that we can review the results together. After about a week of trying to contact them and verifying with insurance, I finally got ahold of someone in the doctor's office that was willing to work through all the miscommunication, and she emailed me the form, I had Travis sign it, then she faxed it to the lab. She verified with insurance and within an hour, she said the test was "in process." Thank goodness for her! Dr. Renner also decided that no matter what the test results are, he still wants to do a spinal tap and run more tests, so the follow up appointment became a spinal tap appt.
On Friday afternoon, we had the appt for the spinal tap, so you can imagine how uneasy Travis was all week. The last spinal tap, he said it felt like a car hit him in the small of his back. He got a double dose of Valium right before the appointment. So the combination of Valium and his lack of sleep, he looked like a swaying zombie. When the doctor came in, he asked me to help hold Travis up during the spinal tap so that he doesn't fall over. At least he wasn't twitching right? The spinal tap went well, in fact, Dr. Renner asked Travis how he was doing as he was finishing up with the last vial of spinal fluid, and Travis said, "I'm good." Dr. Renner replied, "Good to hear. I am just finishing up." Travis was so surprised and said, "Wow. I thought you just started!"
After the spinal tap, the doctor had us wait to get blood drawn too. After waiting about 45 minutes, he came back in to explain that the tests he wants done are not common and they are having a hard time finding the codes for them and figuring out which labs do them. They are mostly to test for "post infectious autoimmune diseases." We asked a lot of questions and after he left, we waited another 45 minutes for the nurse to say that we need to get the blood drawn at the University Hospital. So, as the nurse put it, we went "off-roading" with Travis in a wheelchair across to the next building down a few floors. The nurse left us at this point, so we waited for the lab to get ready for us. When they called him back, I had a hard time pushing the wheel chair through the tight hallway and may have rammed Travis's left foot into the door (don't tell him, he was still on Valium). The list of blood tests was SO LONG. There were 11 tubes to fill up! The phlebotomist put a butterfly on Trav's left arm and couldn't get any blood out, so he was moving it around inside Travis's arm! Travis was cringing and I was mad. Eventually he moved to Travis's right arm and that worked out. After the 7th or 8th tube of blood, I slowly moved back to the wall. Travis looked up at me, "Are you okay?" I replied, "Just a little lightheaded." Haha. Just like Travis to be worried about me, while they are taking all his blood.
Dr. Renner says we should know all the results including Huntington's and Wilson's in 2 weeks. He gave us his email and told us to email in 7 days asking about results.
Needless to say, I have researched about post-infectious autoimmune diseases. There isn't even a Wiki article on it, so I am still searching. I haven't found much info. This article has been most helpful so far.
Why Travis is My Hero Today: Right now, the stress of life has made me over-serious about everything. Every day that passes it is harder for me to be happy as I watch his health deteriorate. Yet, he finds a way to keep me going... keep me smiling. How? How can he do that? He makes me laugh. He makes me laugh all the time. Just last night, we were both sooooo exhausted. He started playing THE FUNNIEST SONG as we were laying down to go to sleep. He even started singing it to me. Laughter is necessary to get through this difficult week. I love his science jokes, his not-so-funny puns, his "dad" jokes, his singing, and his memes that he sends me while I am working. I love how he makes fun of the romantic comedies that I love to watch. I love how he vents with me when I am frustrated with situations at school. I love that we play Dr. Mario on N64 and trash talk each other. He finds a way to make me laugh and forget the dark abyss we are stuck in. Only a hero can do that. He is most definitely my hero (and valentine) today.
Inspiration: I read "Like a Broken Vessel" this morning with my friend Lena on Skype. Definitely worth reading if you have time.
How can you help us? Please contact us. Stop by our apartment to say hi. Text me your favorite quote, or funny meme, or just let me know how you are doing. Help me feel like we are still normal and not just hermits in a basement. Travis doesn't have a lot of energy to go do things, but you could definitely come visit us. We love you all!
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