Still Not Dead

June 26, 2014 at 11:12 pm (Death and Dying, Living With Chronic Illness, Medical, The Journey Towards Diagnosis) (, , , , , , )

I think I’ve told this story before: when I called my mom, I would always start by saying “I’m not dead!” This was because once she chastised me for waiting too long in between calls and it left her worrying I might have died. In fact, she would often leave messages for me that would said, “I just want to know you’re not dead!” It was a playful thing between us, because of our shared dark humor about living with chronic illness.

I say this to you because it’s been a while since I’ve posted anything on either blog. One would hope that means that there’s nothing to write about, but in fact the opposite is true. Things have been both busy and difficult in my life as of late, and I’ve had so much on my plate “writing a blog post” almost seemed like a frivolous endeavor.

It is made more complex with a new neurological symptom I’ve gained. For years, I’ve suffered from a very soft form of aphasia – basically, I can look at a cup, and know it is a cup, and can describe what a cup does, but I can’t say the word “cup”. It’s like someone has temporarily erased it from my memory. Now I find myself misspelling simple words over and over again (It took me three tries to get ‘misspelling’ right!) until I give up and use spell check. If you’ve seen me type, you know that I type super fast – 110 WPM, last measured – and I rarely get hung up by a word like that. And the words that catch me aren’t super difficult ones to spell – I spent 10 minutes on “column” the other day, writing “collum” over and over again. Needless to say, that makes it hard to write.

The big news about my health situation is my kidneys. As I shared earlier, I gained a large amount of water weight in a very short amount of time. I’ve been on several different diuretics, and use a pneumatic pump on my legs for 4-6 hours a day to push the fluid from my legs back into the core circulatory system. I’ve had to buy new shoes because my feet are swollen enough that my normal ones don’t fit. I have to be careful about my fluid intake – too much and I swell more, too little and I get dehydrated fast. It is really annoying and nothing seems to help.

It seems we’ve narrowed it down to where it’s very likely my kidneys. Not only am I dumping a lot of protein in my urine (symptom of kidney problems), but I’ve had flank pain that gets worse when I am dehydrated. I’ve seen a nephrologist and right now he has me getting blood and urine tests every week to see what needs to be done to get me on track.

There are also a host of other symptoms that cropped up, and we are trying to figure out what is related to what. I am having night sweats, insomnia, incredible fatigue (not just being tired because I can’t sleep at night, but being too tired to do anything and running out of energy just from sitting around and talking to people). My gait has suffered and even just walking around the house can be difficult.

There are also a host of things going on in my life that cannot be pushed back or avoided. My soon-to-be-ex-husband wants to change our separation agreement in ways that require me to have legal representation (ie, because I don’t agree with his proposal), but I can’t afford a lawyer and, sadly, my magical rolodex has yet to rustle up a family lawyer willing to take me on pro-bono. As separation agreements that don’t involve child custody are seen as very low priority, organizations like Legal Aid don’t cover them. So I have been applying to various charity organizations while simultaneously trying to prepare myself to represent myself pro se. I would rather eat rusty nails than do that, so I’m putting a lot of time into finding alternatives. There is also a lot of drama from that sector, and that’s all I’m going to say about that.

I also had a friend die from pancreatic cancer, only two months after being diagnosed. I spent time with him both as a friend and as a death shaman, and in the end I hope I was useful in helping him prepare to transition. I was there the night he died, and I did what I could to guide him to his next adventure. It was difficult for many reasons, and he was so treasured by his friends that the hospice actually thought he might be some kind of local celebrity. I think about him often. (I am planning to write an essay just about this, but I am not ready yet.)

It still feels like yesterday that my Mom died, and I’m still trying to tie up lose ends with my maternal family. I can’t seem to communicate with them clearly, no matter how hard I try. I had hoped that maybe my Mom’s death would help me reconcile with them, because I never met anyone from my father’s side, so they are all I have when it comes to blood-relations. But if things keep going the way they’re going, I may have to accept that my mother was the person who kept me connected to them, and with her gone there’s nothing left. I don’t know.

It’s funny, I started this post wanting to write about something very specific. I tried to post about it to FB this afternoon and my keyboard kept “accidentally” erasing it. And now I just don’t feel like I’m ready to write about it in any detail, so instead you get this. But it’s better than nothing, I guess.

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