Earl’s been keeping pretty quiet the last couple of days, although my knees flared up for a few hours last night, and today he insisted on an afternoon nap. Probably hit the hay early tonight.
I’m really hoping my appointment with Dr. Smart next week is useful. I’m prepared to dive into a couple of months of consistent testing to get a diagnosis so I can move forward. I just need the go ahead!
More from the road, no doubt.
Its not that late in Texas, and I did take a nap today, so maybe its just bad luck. But I’m wide awake at 1 am. (Ok so that’s not unusual, since its only 11pm in California).
Anyhow, the last test result came in today and it was another normal. Sigh. Still, I did get the one high number. I’ve scheduled a phone appointment with Dr. Smart, and sent an email about the next steps (possibly I don’t need the phone appointment, I just need more testing). I’m likely sending my MRI to be read by a team of neurosurgeons.
I’m so ready for a cure. 😦 As the move to Texas gets closer, I realize how much hotter and more humid summers are here (and how much longer they last) then summer in the Bay Area. I am still sleeping in fleece pajama pants in California, but tonight, I’m sweating in cotton. Earl has made summers even more miserable – nothing like carrying around 60 extra pounds to make you sweaty and uncomfortable. Oh and let’s not forget, my body is so misshapen its hard to find clothes to wear. And the purple stretchmarks have popped up in new places, including my inner thighs (running down them to nearly my knees) and new ones on my tummy. I think they shall be known as the Purple Fingers of Earl.
I wish there was an interim solution to the weight and Cushings, or that I had more highs. The more highs I get the closer I am to surgery and a cure. With one high, I’m going to have to try nonstop testing for a couple weeks to see if I can find a pattern. Maybe multiple types of testing (urine, blood, saliva) all on the same day to see if one works better than the other. I don’t want to still be sick in 2011.
So basically I’m wishing for answers and a clear plan of attack, even though I know the answer is keep testing. The truth is out there. 🙂
So in addition to Earl’s plan to disrupt my life by keeping me awake at night and asleep during the day, the other best part of this disease is the joint pain (well maybe not the best part). My knees feel like…I don’t know, I have arthritis? They hurt SO much. It’s not every day, I think it’s actually related to being in a low as opposed to a high, but I don’t have any proof of this to date. I also can’t find a correlation between the amount of time spent on my feet and my knees bothering me. Sometimes I’m out walking a lot, and other times (like today, just a little). I take anti-inflammatories and sleep with my legs on a pillow to relieve some of the pain. It’s terrible. I cannot imagine trying to run with this kind of knee pain. Sigh. Just one more way Earl is trying to ruin my life.
In other news, Earl and I are relocating to Texas where I will be moving in with my parents for a few months while I try to get Earl figured out (along with other parts of my life). Let me tell you, Earl is impeding the packing process. Several days in a row I’ve set out to make a dent in the packing, and I end up passed out on the couch or the bed sleeping. I also wonder how well I’ll do driving half way across the country. Traveling tends to wear me out pretty badly these days. Fortunately, my dad is coming to help me with the drive. Earl, are you listening? I need a few good days at the end of the month. There’s a trailer to load and driving to be done!
Still waiting for the last two urine test results. So far, with a range of 10-34, I’ve got a 28 and a 39 (and, FWIW, those tests were consecutive, Saturday 39 and Sunday 28 – wonder what that means?).
Well you know you are a sick twisted person when you celebrate an abnormal test result, but I got a high 24 hour UFC! I have 2 more pending, so let’s hope those 2 are also high. I’m going to do another test this weekend or early next week.
In other news, Earl and I seem to have arrived at some sort of a truce. If I don’t push myself too hard, I won’t suffer too badly. But if I do too much, chances are good I’ll be so exhausted I can barely move.
So that’s where I’m at. As I said on Facebook, Earl, I’m onto you and I’m coming for you. Watch your back!
Sarah versus Earl 