week six began monday. six weeks of a liquid diet and food either comes out one end or another almost instantly. perfect timing for my best friend (other than the wife) to visit starting last thursday and left today. she lives alone and by choice, I have to respect that, she needs her freedoms and needs to live her life her way, ’cause she’ll stab you if you don’t let her. we have a connection that goes back to high school theater, it was the time in her life when she could no longer hide just how ravaged her body was after doing so much to help support her family. now, years later and 3 hours apart we talk online a lot, some night’s i’d run the three hours to provide more comfort. we are both chronically ill, in our own ways mostly sharing only seizures. while she was here, Bella my seziure/service dog detected one of her’s, the dog has talent and now i know it’s not just me. we had a very close nit class our senior year of theater, but both of us have found that after high school that we have been banished, either for not being social, or for others not believing we are truly sick. if i did find a religion that I could believe was beyond myth and storytelling (no offense to those who do, I respect you and do not want to debate religion, this just isn’t the blog for it.) if I could find some way to take some of her pain away I would, gladly. I know that my wife has expressed this frustration many times upon seeing me in pain. This past week I slept with my door open, just to know she was still breathing, my dogs slept with her and she was here, every time I saw her, I remembered the fear and worrying through IM’s late at night or a text message. Knowing she was safely here, brought so much relief, even though tonight, the worry begins again, I try to sleep without knowing if she made it home. I wonder how much of a toll this takes on my wife, and I think now I have a better idea. The wife had a less stressful week knowing that somebody was with me…and worried less because of it, knowing that somebody was here that truly understood. I treasure our late night talks, I regret not hugging her enough….she just felt like a ghost and I never really got past that. I missed having somebody that knew me before I was sick and believed me, cared for me, and watched over me through this very rough week of mine. My heart (I do not know if this is a literal of physical reference, the pain and worry go to deep) has been sectioned off and I’ve put it so willingly into only a few hands, nobody has destroyed it, but some have caused pain, some I no longer talk to, but all I think of often, if not daily. The two biggest pieces belong to my wife and my best friend, because they are the people that handed me a piece back, entrusting me to keep it safe and warm. Something about our house now feels so empty, suddenly she was at my door step and then this afternoon I woke up in a daze as she made me take my pills, drink, make promises to keep working to get better. There is so much that goes upsaid between us, yet is very known, we have yet to pinpoint what this is or why…though it is not something I ever want to go away. We trade war stories, bad needle sticks, ER visits, and bits of humor in between. I hate to think that I wasn’t ready to say what I’ve needed to say, or do what I’ve needed to do in my life, if it is over in this moment, I would want my wife to worry less, my amazing friend to find answers, get well, and write the story of our lives…which is nothing exactly like Steel Magnolias. I would wish the world no pain in my passing, and hope that those who I loved the most never have any doubts. During her almost week stay, she moved like a ghost, and I never believed my eyes…maybe it’s a fairy quality, the wife sometimes becomes a dream to me as well, as I fade in and out of sleep. It’s scary not knowing which one of us will be the first to go, both asthmatics, both hypoglycemic, both seizures but so different, her congestive heart failure, PTSD, and more things I could list. And I am still in the unknown. I’ve been having a lot of nightmares lately and the most terrible one has taken me out of my bed and downstairs to sleep by her side……..I can not begin to describe the dream. We do have a lot in common, we hide our pain with humor and what most would consider poorly tasting sarcasm. We both have problems with the system and wish for better care, we’ve been mutilated in different ways but in both cases by somebody carrying an MD. I wish her wings to fly, I want to read her books, and I know she’ll be kind enough to record them for me, since I have trouble reading. I don’t wish her money or wealth, I wish her good health….which both of us so young have realized that without that you have nothing…..the same for human touch. The pace that the world moves around us has quickened and we both seem to be just trying to catch our breath. I hope that she got some much needed rest after a car accident last week. I hope that being here and near me, my wife, and my dogs brought her some form of comfort as it did me. My insomnia has be terrible, but had good timing since, I was allowed to go downstairs lay on the floor and listen to each of her breaths, with each something inside me felt better, more safe every time she was allowed more breath. I feel that way about my wife as I listen to her asleep beside me now. My friend and I have suffered great trials, some we rarely speak about but are not unkown since we have a deep connection that neither of us can explain. We have many stories that we could laugh at over and over. We have the war stories and the pain that each of us would glad take and add on to our own for the other. We are both “too young to have been though so much” but we have, and we survive in our own ways.
This hasn’t been an easy time for you,
and as one who cares about you,
there have been so many moments
when I’ve wished I could have somehow
spared you some of the pain
or at least cushioned the blows.
But it seems that we each
have our own roads to travel in life.
For a while, we’re on a smooth,
well-worn path,
then suddenly the road swerves.
But do you know what?
I’ve watched you with admiration
as you’ve faced difficulty
with strength and courage.
And even in those times
when you may have wanted to give up,
you somehow found it in yourself
to carry on. . .
and I just know you’ll continue to do so.
You’re a remarkable person.
And even though
this is your road to travel,
be sure to look along the side
from time to time.
The person you’ll see there,
the one cheering you on,
will be me.
She wrote me an amazing letter that I still keep close, for when I miss her, or just feel down. I have searched for so long for something so close, and right now this is as close as I come. She is my strength, my hope, another reason to keep fighting because I know she is, and somebody that I admire more than she’ll ever know. She should be coming back soon, I never knew that three hours could be so far…..so far that at night I ache before I fall asleep, I hope that the little blue monkey she has from me can provide some comfort. I miss the two of us when we were silly, were jaded, but less than now. I miss old times when I see her, but the thing I miss most is not being closer sooner, I often wonder how I could have helped, could I have saved her. She is the Tink to my Pan as is my wife, they are in very different ways. We have different connections, but on equal levels. She’s the type of person my wife wouldn’t mind in our bed asleep with me. She’s that person that knows what is wrong before it happens and is already there. If I am the first to go, I know she loves my wife deeply and will be of great support….what stories they will have to tell. I love her for her stubbornness that is equal to mine. I do not know what we would do without each other, and having her here this week has only heightened that awareness-tonight is a rough night and I know it doesn’t get easier. I look down the road, I hope she finds happiness and love, and can have children. I want to be a godparent, I want to spoil her kids. She’d be a great mom, and already has been to her niece. I hope she gets published because she is amazing. I hope we can do theater again together. I hope us both well, and I have more hope in her, I could go on with this my whole life if she is given a break. Seeing her is the kind of thing that makes you want to hold onto life a whole lot harder, and say I love you a whole lot more. We both have seen, felt, been in, survived, the unknown….and have learned to always say what you mean. I’m sorry I had such an off week, I hate that I slept through you being here…I did all I could do…I know you know that. And yes I’m drinking.
WEEK SIX
Week six without solid food. Monday MD appt. as well as Wed. appt. to see GI doc. 3 sticks in 3 days. CBC from monday (left wrist, bruised and swollen) does not report major dehydration and kidney and liver function are “normal”, which does not sent me to the hospital, no matter how close to fucked they are….I’d rather no be in a Hospital. GI was nice, had to stick me in both arms, gonna bruise due to moving the needle around so much. It’s ok, people always feel bad, but I honestly cannot feel it, until it bruises later. GI wants a stool sample, but now I’ve been throwing up more…he wants more details before going further like an endoscopy or colonoscopy, maybe an abdominal CT….I think he’s being very safe we have a tentative visit set for 6 weeks but he hopes to do something sooner. I hope I can do this stool sample…just not a lot going on, since the liquids only, I could eat something….but I’d rather not have to make myself get sick. I may call if i’m having trouble. We’ll wait and see like always. Medicaid drops Aug. 31st, so trying to get meds. and refills before that goes.
School is holding due to my name change, but I’m working.
The wife has been great this week, but we need more time for us……we’re losing track she’s busy and I’m sleeping. Since I cannot drive this has slowed a lot of things I need to get done, I can no longer go when I want to it has to work out for both of us and that is very difficult, but she tries. I will work on this, we need our strength to face the road ahead.
I don’t know where my head is, my heart is all over the place. I wish myself some peace.
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