I cannot believe I am writing this and making it public. I promised a truthful accounting of my life, and damnit, I can't hold back. Beware; this may constitute TMI, and if you make fun of me I will hunt you down and smack you. Hard. Promise.
I wet the bed last night.
I kept trying to move my legs to get up but the pain was severe. I made it to the bathroom, but had no strength to do anything else. My ambien mind didn't think to call for mom's help, nor did I want to. How humiliating. Almost twenty-seven years old and I'm writing a blog about pissing myself. I'm sure it won't be the last one.
I wiped up the bathroom floor with my wet clothes, and made it back to bed. I didn't have the strength to even move the books from the dry side of the bed, so just huddled around them to sleep on the dry half.
I feel like such a complete loser. It's times like this that seriously derail whatever sense of self accomplishment I have built up to this point.
Mom and I talked in the car today about... something... it involved breast cancer, the Susan G. Komen Foundation, and wishing that blood cancers were made as public as boobie cancer. We began talking about leukemia. About all of the advancements made to treat leukemia. And somehow, my mind wandered and hasn't stopped since. With all the advancements to treat the disease, it seems like the side effects of the treatment are... left behind.
I have acute and chronic graft versus host disease.
I just read a blog, of a young man who died after his bone marrow transplant from complications of graft versus host disease. It makes me want to scream and cry~ I struggle so much every day to contain every ounce of unhappiness and to just stay thankful for my life and everything in it-- but then moments like this happen. Moments where I just feel scared. I feel alone. I feel empty. I feel pain. I feel guilty for being alive, although I'm sure that doesn't make sense to most. I've been told that is stupid- I've been told I should just be thankful to be alive.
I am thankful, but that doesn't mean I don't struggle every day to stay that way.
And now I'm forcing myself to struggle even more.
Ugh. Withdrawals. I'm glad I have the knowledge to recognize what is happening to me. The intermittant sweats, the abdominal aches, the runny nose, the tingles- They don't all hit at once you know. Just a little at a time, until I can't handle it anymore and I soothe the withdrawal and the pain with just a small little white pill.
I am proud of myself- I have weaned my body down in dosages. instead of 6 pills a day, I only take 2. Instead of 90mg of extended release, I only take 60mg.
It's like a full out war being re-enacted inside my body. And I'm not talking like modern day warfare, I mean muskets, cannon balls, and bayonets vs. mass guerrilla warfare tactics.
Morphine vs. Pain.
Speaking of morphine, mom and I went to the SCCA today to get refills I had called in for refills before the whole pain clinic fiasco. When I got up to the counter, somehow, mysteriously, I had a prescription for more morphine extended release tablets. I don't know where they came from, I didn't want to get them but mom gave me this looks like "Yes, shut up!".
The thing is, I know that I need them in order to continue tapering, so I don't want to complain about receiving them. Mom even did explain to me that at one point before my trip a prescription was set up to be given to me at the appropriate time. I'm thankful and glad to have these additional 25 pills to allow me to taper much much better-- but it is still completely frustrating. I told Karen I wasn't going to get or take anymore, and here I am accepting a prescription that I'm not even sure how it got up to the pharmacy.
On Day 1: Research while we were at the Lynnwood Library, I saw a flier for an event about cancer for women and nutrition and juicing for health during chemotherapy. I wanted to go very very badly, but it was at 7:00 pm. That means mom would already be at work, and there isn't anyone I would feel comfortable asking if they would be willing to drive me there.
So I made the decision to drive myself.
To say both mom and I were nervous about this decision is an understatement. It's kind of funny that I'm not nervous to stop major medications, but I am nervous to drive to the Library at 7:00 p.m.? Somehow it makes complete sense to me. After a somewhat short discussion with mom, we decided, or I decided at least, that I would go to the Library at 6 p.m. take a morphine after I got there, and stay until the library closes at 9:00 p.m. The reasoning being 3 hours would have passed since taking the dose of morphine, and most if not all of the effects would have worn off....
Then mom made a statement that completely took me by surprise and I wanted to reject IMMEDIATELY!
"You have to respect your limits, Maria."
I mean, limits? Limits? I'm not limited! The sky is the limit! ..... right?
Not quite. I very awesomely have extreme limitations. Interestingly enough it had been thrust into my immediate purview earlier at the SCCA when we went to go get my medical records and refills. While at the pharmacy I received a phone call from the therapy study that I have an in-person interview with on March 2nd to give me the parking code for the handicap parking lot. Interestingly enough the password is "BAGEL". That made me laugh immensely since it was a bagel that tried to kill me in Texas! (I was in the hospital for a week with a bowel obstruction after eating a bagel).
Well, without thinking I leaned down to grab a notepad and pen out of my walker, and BAM. I almost fell but regained my balance. Thank goodness for my walker being there, because I am fairly certain hitting the floor would have hurt more. The twinge of pain stopped me from walking the rest of the time we were at the SCCA.
I have to be extremely conscious of every move I make- and one slip-up like that can devastate my entire plan. I also have to be conscoius always of how tired I am getting. There is a direct correlation between how much activity, how much pain, and how tired I am. I have to respect that.
I don't want to, but I have to.
I'M A SURVIVOR