Friday, March 21, 2014

Back to the Land of the Living and Results

Well, I went back to work this week. I made it. I did it. Even though I felt incredibly guilty about being on leave, I needed that rest and intervention. I wasn’t going to make it much longer and definitely not to the end of the semester. Going back to work, I felt embarrassed and awkward. With teaching, it’s important to maintain momentum and the connection with students. I was worried I was going to have to start from scratch. I even thought I’d jokingly suggest we all reintroduce ourselves when I walked back into my classes, but as I walked in one of my students shouted “Hey! You exceeded the maximum number of allowed absences on the syllabus and we were going to drop you from the course.” I told him luckily they don’t have that power. We all laughed. It was brilliant and put my fears to rest. I am still struggling with the constant exhaustion and weakness. Over these last few months my energy level has plummeted and I just feel worse overall. I really hope this isn’t a new normal. I'm also dealing with some intense family issues, but my plan is to get some rest and recover this summer and be bright, shiny, and new for fall.  But I’m doing better. My spirit is renewed. I’m ready to keep up the fight and finish the semester with my students.  I’m ready to start enjoying life again. Snuggle my cats, laugh with my husband, do some cartwheels when no one is looking.

A colleague asked me today if I was on leave because of “stress.” I had to hold my tongue and politely inform her that she was mistaken. Sometimes I have to remember to be patient with people because I don’t look sick so they can’t know that even though I show up to work most days,  I’ve spent the last 4 months suffering and being periodically bedridden and needing to go to the ER.  I’ll take it as a compliment that I make chronic illness look good. 

I just wanted to mention the results my neurologist’s nurse practitioner gave me at Stanford for the autonomic testing I did in December. Autonomic testing can confirm autonomic dysfunction, and it is one test that was actually created to diagnose dysautonomia. I was scared out of my mind to do these tests and put it off for over a year, mainly because I did not ever ever ever want to do another Tilt Table Test again. It’s enhanced interrogation, straight up torture. I finally relented. There are three parts to the test: the TTT, the QSART sweat test, and Valsalva Manuever breathing test. This video explains them and you get to watch someone be subjected to them: Try to stay awake through it. 

I walked into the testing room on the verge tears and told the neurologist and nurse I refused to do the TTT. The first TTT I did in 2012 was before I was diagnosed with POTS, and I had no expectation for the test. When they lifted the table up, my heart rate, which was attached to a monitor that beeped loudly, went from 72 to 147. I thought some alarm was going off as my heart rate was beeping wildly. The sensation of slowly being lifted to vertical made me want to vomit and pass out. I will never forget that awful sensation. Then, my cardiologist injected me with a medication to make it go higher to see if I would faint. The test proved my days of partaking in the joys of rollercoasters and tilt-a-whirls are over.

Luckily for this second one, they were kind, patient, and nice and they cut me a deal. Instead of the table lifting all the way up to 90 degrees for 30 minutes, they let me just do 60 degrees for 6 minutes. My heart rate wasn’t attached to a monitor and I wasn’t injected with anything. It was a breeze. A neurology TTT is much easier than a cardiology TTT. My heart rate still went from 72 to 147. At least I am consistent. The breathing test was the most difficult but they told me it was normal, which I wasn’t expecting because breathing is a struggle. They told me my sweat test was abnormal and explained that there is some nerve damage so my body doesn’t sweat properly. That’s great for living in an area where it is over 100 degrees for four months a year. They told me I should do more testing for this. I’m not sure what other information that would provide besides confirming I am a weird sweater. I guess I could just put “weird sweater” on my resume and call it a day.
Not the Bill Cosby kind of weird sweater
I also did a nerve conductivity EMG ( see if the new mystery of my weird walking problem is nerve damage. The test showed no nerve damage. The saga continues and will likely include more testing to figure this one out. I have heard these words mentioned in relation to this new mystery: MS, ALS, Parkinson’s. I’ve learned it isn’t worth panicking about any new possibility until it is a reality.

I’m not sure what the autonomic testing really provided and I don’t really understand the results, so I failed at explaining them to my other doctors. This is the problem with having a rare chronic illness: I often have to be the expert and the line of communication between doctors. I'm not sure what my degrees in literature really prepared me for, but they definitely didn't prepare me for that. I see my neurologist at Stanford at the end of May and I hope he can tell me more about why those tests were useful besides confirming I have POTS. 

I worried about doing those tests for over a year and it wasn’t nearly as bad as I expected. I should have learned a lesson there, but I still panic and stress about every test I have to do. There will be more tests in the future, but I will face them in my battle gear.