I'm exhausted, but want to post a quick update. Tomorrow is my big appointment with Barrow's. I have to say, I'm actually pretty nervous. I honestly hate explaining the twenty million details of my case to every doctor I see. I kind of feel like it's a test, as they grill me with questions, look at me critically and then cut me off if they decide my answer isn't important. And then they do a physical exam, making remarks or grunts, and never telling me what they are thinking! I'm sure the problem is that I've seen more than my share of docs! With hospital transfers, plus docs of different specialties, and their partners, I saw TEN docs at Banner Desert (two of them neurologists), FOUR docs while at Banner Baywood (two of them neurologists), and FOUR docs at Good Samaritan (one neurologist). Plus the neurologist I saw when I first got out, my PCP, and the Barrow's neurosurgeon. What is that, twenty-one doctors?? (also, throw in about nine physical and occupational therapists who have also asked for the full story and done full evaluations!) I'm exhausted even just explaining it!...i guess that accounts for how I am feeling right now. It's been too many doctors, and no answers. I keep asking what would happen if I just decided to drop out of all of this. I know that would be dumb, but it sure is tempting! I'm really hoping the Barrow's neurologist tomorrow will care about helping me, not just exclaiming over how unusual my case is. I realize I'm a hard case, but I need someone who is willing to dig in and stick with this until we resolve whatever is going on.
A few great things happened today. This morning I went to my first day of outpatient physical therapy, and it was so helpful and motivating! I have to say, the workout about did me in, but I am so excited to have such amazing equipment and therapists. It is a particular type of physical therapy (i will try to remember to explain more later) but I am pretty sure they are the only ones who can do what they will do for me. I am really excited about it! Another great thing that happened today, was that I finally got my hands on the results of my spinal tap! I heard from multiple docs in the hospital the results of the spinal tap, but nobody has been able to get their hands on that report since the very first hospital. And many docs and docs offices have tried!! The Barrow's neurosurgeon told me if we couldn't find it, we would have to repeat it! I think the spinal tap was the worst test of all! Repeating it is not on my wish list! So i drove to the original hospital where they performed the test. After half an hour of telling the records department that they still weren't giving me what I needed, they finally cut me off and said they had given me everything they have on record. They were trying to be really helpful, but they were adamant that they didn't have what I was looking for, or that it was hidden in the stack of papers they had already printed for me. I'm no doctor, and those microbiology reports are pretty complicated, but I was pretty sure I didn't have what I needed. So I was driving home, feeling frustrated, thinking of how I was likely going to need a new spinal tap, and how that would prevent the new doc from making an action plan. I just kept thinking how is it possible to lose a test like that? How would it not be on file? And I started thinking about the doc who ordered the test, and our conversation about the results....and I had a brilliant idea. I pulled out my GPS, looked him up, and drove to his practice. When I got there, his receptionist was completely unhelpful and said there was no way she could pull a hospital test for me. I decided to briefly explain how desperate the situation was, that I just needed a copy, that nobody could find it, and that they were going to repeat it if I couldn't get my hands on that report. As it turns out, one of the neurologists I worked with in the first hospital walked into the front office as I was explaining this. I have to admit, he wasn't the most helpful doc in the hospital. But for some reason, his heart must have been touched by my explanation, because he spent about 20 minutes helping that receptionist track down my test. I am still in shock that he would do that. Neurologists are known for being extremely pressed for time. In all of my medical chaos, those twenty minutes absolutely meant the world to me! Having that test in hand tomorrow when I go to Barrow's will make the meeting twice as productive as it would have been. I am so grateful. If he hadn't been there at that moment, or if he hadn't decided to help, I would still be empty handed.
After going to the hospital, I went to an assisted living center and visited one of my dear friends from the rehab unit at the hospital. He is 97 years old, and so amazing! He was telling me about being six years old and riding a horse to school. He was too little to actually climb on the horse, so his family would strap him to the horse, and send him on his way. When he had traveled a mile and a half across the prairie, he would get to school and the older kids would help him off the horse and put his horse in the stable! He told me about how his school started a hot lunch program, and on his day to bring lunch, his mom roped a pot of hot soup to the horse. He said the horse didn't like it one bit! He also mentioned a time when he got lost trying to take a shortcut, and he was pretty scared being only six. He said that smart horse finally realized they were lost, took over the navigation, and got them to the school house! Haha! He was also telling me about being a submarine tech for the Navy. His stories are so much fun, and seeing him again really made me happy.
Oh, and also, the weather today was AMAZING! It's been a really great day. I am exhausted from PT and running around, and really nervous about my Barrow's appointment tomorrow, but all in all, it has been a truly amazing day!
xoxo
Mandy
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