I woke up this morning with an overwhelming sadness. I can’t describe it, but it’s like how you feel when you listen to Nirvana’s Unplugged MTV album.
Last night I made dinner for an old friend I knew from Austin who is visiting and working in San Antonio for a few months. He’s a stand-up comic and is one of the coolest guys I know. He’s been living in NYC and traveling around the country doing stand-up. I don’t think I’ve seen or heard from him in over 14 years or so, but he found me online and we traded info. It was great to see him and catch up, but it just took me back a bit and reminded me of my “before” life. It feels like someone else had that life. That version of me never existed and now I have my life of disease and doctors and meds and pain. It feels so never-ending. There are no future plans. There aren’t any new goals. My joy comes from Zoe. My mission is healing, but as hard as I try, it is not working.
He saw the Slideshow On My MySpace Page and I could tell he was visibly moved. He said to me, “You are one of the strongest people I know.”
I don’t feel strong anymore. I fake it, but I don’t feel it anymore. Not one bit. I’ve been through hell and back, and I just feel weaker now than ever.
I had my checkup yesterday morning at the transplant clinic. I was so tired that I was an hour late. They didn’t give me grief because I am so overwhelmed that I think it radiates off of me.
Blood draw. A drop dripped on my sandal and is now a permanent spot on my favorite pair. Counts are ok, but still having issues keeping my magnesium levels up. My blood counts are normal, but generally on the very low side of normal. I feel like a Zombie. Or a Barbie Zombie (Thanks Amorette, that made me smile) And can I say, coolest Halloween decorations. Ever! Go welcome her new puppy and see her groovy zombie stuff.
Dropped my steroids down to 4mg from 8, which is nice. He said he didn’t like the results from the GI doctor’s office. When the GI folks called me, she told me the doctor wanted me to start taking some medicine 3 times a day (yay, even MORE meds for me to take and pay for) for my stomach symptoms. What those are, I’m not completely sure, but somehow she said my stomach is not working right to digest my food quickly enough.
The test, which is called a gastric emptying study (yuck), is where they make you eat these radiated and thoroughly disgusting eggs and dry toast and jam, and then you lay still for an hour while they basically watch you digest your food. I felt like I was going to throw up putrid egg all over the place.
I feel sometimes like I’m going backwards. My health is spiraling downward. Diabetes, Fibromyalgia, GVHD, stomach issues, lack of appetite (I’ve lost 17 lbs in 4 weeks) breathlessness, and my veins in my chest and neck have been damaged from chemo and are narrowed, possibly clotting (CT and ultrasound had different results). They are debating on whether they will put me on blood thinners, but he said he was going to just keep an eye on me for now because blood thinners would be very dangerous to me with my counts.
Last night I went to bed pretty late – after 11pm. I was watching television and started getting major hand cramps. They lasted for over 3 hours. I tried everything. Milk, magnesium pills, water. I have no clue what they are, but it hurts like fuck. It’s like my hands cramp and seize up. I’ve told my doctors, but they never address that issue because there are always more important ones.
I tried everything to make them go away. I wanted to cry, but I was too tired.
Tim phoned me to check in. I think he felt guilty because he was avoiding my calls. I’ve been pretty hurt about our breakup, and I know he gets frustrated because he knows I love him and how sad I am. I know he didn’t intentionally try to hurt me, but I just am so stunned that he isn’t going to be in my future. I finally reached him the other night and told him how much it sucks not to have someone care and check in on you (and yes, I have friends/family that do that, but it’s just kind of not the same.) I write my blog so people know I’m alive. I’m posting, so I’m still breathing, right?
When we talked it was always about the bad stuff going on in his life and he stopped asking anything about how I was doing. I just stopped even talking about it. I feel like a jerk for telling him about that, but it just is that way. He’s so disconnected from me, I don’t even know if I’ll ever see him again. Zoe’s devastated about that. When he called yesterday I was eating dinner and she seemed so happy that he was calling. She ran for the phone and handed it to me, but I didn’t have the heart to answer it. She still thinks he loves me and we are going to get married some day. Ah, my lovely, bird-talking hopeful. I’m sick and tired of being… well you know already.
It always felt like I had someone with me going through all of this, listening and really caring about the outcome. That I had someone I could stop being strong around and just be vulnerable for a little bit. For a long time it was Monkeyboy and then I had Brenda to talk about how afraid I am sometimes. How terrifyingly frightened I am sometimes. Then I met Tim and he and I were so great together. I felt safe and loved and cared about. He was amazing and he loved me. He bought an engagement ring back in April. It was so lovely. So beautiful. I found it one day and it hurt so much that he couldn’t give it to me. He’d lost his heart. Tin man.
I don’t think he sees himself in the same light I do. I adore him. He says I love someone who no longer exists. He’s just gone emotionally void towards me, yet I see how caring and loving he is with his children and friends. It hurts so much not to have his love for me. But it is what it is and it won’t ever change. I know it as well as I know my own heartbeat. I just have such a hard time wrapping my head around how someone who cared and loved me so deeply can just feeling nothing anymore. I miss him so much. I miss his love towards me. I can’t believe how he doesn’t even remember feeling that way, yet I so clearly do. I ache for it. I know it so well. And he is sick of hearing about that. I don’t think he knows just how shocked I still am that our relationship is over. I feel delusional, like it never happened maybe.
I also miss Seattle. I want to go back, but know there is no way in the world I can afford it. I close my eyes and feel the cool breeze and I can so precisely see the trees and the beauty of Seattle. It was so my home when I was there. It felt natural to be there, like I had been there my whole life.
My health insurance runs out tomorrow. There really isn’t a bailout plan in place. Right now it’s prayers that one of the two options comes through as I am “uninsurable.”
That word reminds me of Amorette’s blog where she wrote the phrase “Gravestone payments.”
Those words don’t go together without inducing a bout of nausea.
I can do this. I’m down, sad, in pain, missing my pink, and someone Stole Money From The Deb_fund (more later on that maybe), but I’m here. I’m breathing. I’m living the best I can right at this moment.
You assignment today is to pray to the saint that oversees medical insurance. Who is that? Saint Augustine of Medicarus, Patron Saint of Hopeless, Expensive Medical Tests and Bureaucracy?
Can I just wrap myself in bubble wrap?