I am sick. Very sick. Again. I keep hiding things that I shouldn’t be. I’m not accurately communicating even when I try my hardest. Today has been filled with lots of tears. My plate and cup are overflowing with guilt and stress and fear. I am afraid of dying. I am afraid that despite my best efforts, I may yet die from my diseases.
The Call. I got a notification from my lab that my test results were in. I went online and looked at them. Much to my dismay my ammonia levels have continued to go up and this sent me into panic mode. My white blood cell count is high, along with BUN and Creatin and a few other things. Of course this was after hours for my doctor’s office. I tried calling my primary care who, of course, is out of town on vacation and doesn’t have an opening for 3 weeks. I was (and still remain) terrified of going back to the ER because of contamination and I don’t want to be put back in the psych ward, especially when I know what’s causing the chaos in my brain. So I called the on call for my specialty doctor and thank the Lord that my doctor was on call. I conferenced my mom in on the call and we talked about all my issues. My mom was great at adding the things that I was missing and not explaining well at all. I was to wait till the next day and my doctor would call me back with an updated plan.
After talking with my doctor again yesterday (my mom happened to be with me) the situation has been evaluated. Changes in my meds and more lab work. And now the waiting game.
One thing that my doctor reiterated to me was that I am NOT out of danger yet. The ammonia is still doing things to my brain and my body. It could cause liver/kidney failure as well as damage to my lower intestines. It could cause my organs to fail. Not to mention what its already doing to my brain (mood swings, highs/lows, confusion, poor judgement skills, not being able to communicate correctly…among other things.) My Bartonella is flaring and rebuilding itself. I have the classic “cat scratches” again and they are spreading. This means that the Lyme and Babesia are also growing stronger. My joints are almost unbearable. I have been doing lots of yoga and stretching to try to realign my body and center myself. I’m failing. The cards are once again stacked against me. And for the first time (despite the past suicidal thoughts and feeling like death) I am SCARED and TERRIFIED that I may not win this war and that I may die.
I keep telling myself death is not an option. I haven’t fought this hard for this long to die. I am still focused on one day at a time, but I still want things down the road. I’m not finished down here, on this plane yet! My body is crying out! Its been to hell and back and its been ripped apart by the diseases and by treatment. I’m trying to heal it. I can’t go back to dosing until I’m stable enough to handle treatment. I can “what if” to death (no pun intended) but that’s not helping me. So I’m giving in and accepting things…for now. I am working on a serious adjustment of my mindset and my attitude. I look so healthy and even though I have chronic pain, I’m not physically incapable (to the extent I was before) of doing things, this time I HAVE to make myself stop and heal and be in bed and sleep. I have to take my meds (the ones I’m afraid of getting addicted to) because my body and brain need them for now. My mom said that if I do get addicted then somehow we’ll get me into rehab. But I can’t go to rehab if I’m dead. I’m finally listening and taking my meds they way I need to. I’m trusting that I am strong enough to face the addiction fear factor in the face and not be drug down that road.
Its all I can do. Even if that means letting go of the reins and trusting God and my doctors. For a control freak that’s hard.
I had therapy this morning and I cried during it (usually I can control it but not today.) After that I went to see my friends and meet their new baby for the first time. Holding him, I felt the innocence of new life, of a new beginning and new world of exploration. He was beautiful. I cried. I was talking to my friend and I finally talked to her about what’s been going on (I was hiding it and holding it in because she had enough with the new baby who was in the NICU for 2 weeks and she’s a first time mom and I wanted her to enjoy this time in her life.) I have missed her so much. Life has greatly changed for both of us in the last year and due to circumstances beyond our control, distance has crept between us. When I was leaving she said “If you need anything, let me know. Just because I have a baby doesn’t mean I can’t do things.” I told her the best thing she could do for me was to work on our relationship and make it better than it has ever been. I mean this. Yes, no one is perfect and we’ve all made mistakes and with my fucked up brain, I don’t always react the way I should (sometimes its overreacting and sometimes its underreacting-I can’t seem to get it right yet.)
There’s a million and one things that have been racing through my mind lately. I can’t control if God decides my time is up. But I’m making each day count. I’m doing my personal best all the time. I still make mistakes and am far from perfect, but I’m trying as hard as I can. I have to be selfish now because of my health and that goes against my nature. I’m sorry to those that I hurt by that or by my words or by not being able to be there. But if you truly love me and are a good person for me, I know you’ll forgive my transgressions. I might to ask for some favors. The biggest thing that I need now is love. I need to be reminded that I am loved and that I CAN do this!
I need to be reminded because my memory has gone to shit and with being alone so much, the darkness will start to creep in, trying to pull be back into the pit of its stomach and that, this time, it may devour me. I know I am strong and that I am a fighter and no matter what the outcome, I will not go down without a fight!
“I have survived because the fire inside of me burned brighter than the fire around me.”
On a side note, for my fellow Lymers (I prefer this to Lymies which remind me of sailors), please listen to “Ten Million Voices” by Shaman’s Harvest. It will remind you that you are not alone and that the only way we can make a difference is when we pull together and make our voices one.
“When it feels like your heart has been bled and there’s no more left to be said, trying not to fall / There are ten millions souls who are feeling like you and ten million more who are finding the truth / And it feels like its right where you belong / When ten million voices are one”