Thursday, May 10, 2012

what really happened tonight- coma remembrance continued.

Know what? I can totally understand my mother with her predicament now. We went ahead and saved her life, and now she has to live with this life/no-life thing. I mean, she is alive, but cannot speak more than a simple word or two, has no control over her body, and is basically at everyone's mercy. She has a tendency to slip down sideways, and cannot pick herself up again. She must wait until someone sees her this way. That is one of the reasons my dad is there every day.

I'm sure that she herself would say that it is better to die. Life can go on and on this way, but she isn't happy about it one bit. I *understand* that. My father is visiting her every day. He isn't doing so well; he's overcome with profound exhaustion and pain from his destroyed hip joint. He won't have his own hip replacement surgery until late June. (I will probably go there at that point.)

I spoke to her tonight, she moaned "hi" to me, and when I told her I loved her she was able to slowly, in low tones, say that back to me. I cried. But that isn't my mother. We didn't get back the same mother and wife we had before the infection. It was the mistake of a careless doctor that she got sepsis from a simple run-of-the-mill urinary tract infection.

My family didn't get back the same wife or mother either. And, like my mother, it was the mistake of a careless, overconfident surgeon that got me into septic shock after having a simple run-of-the-mill hernia fix.

Tonight, I want that surgeon to know that I am torn apart by what he did.

I cried and cried, deep gut-wrenching painful sobs tonight, this five-year remembrance of waking up from the coma. I wish he could've heard that sound. Although, at this point, he'd probably be inured to it. He got to walk away. I live it every day, every minute.

I think that everyone around me is "over" hearing me talk about the ongoing issues. Nobody wants to deal with my ongoing issues. Like, "ok, move on. It is too much for me, so I don't want to be the recipient for you needing to talk. Tell me, what *good* thing is happening?". I think I have lost a few friends that way. It's not like I don't want to talk about good things, but I often can't start to see those things until I get hardships out of the way. And sometimes they are such hard hardships that I need to talk about it more than the five minutes I've secretly allotted, in order to try to keep friends.

But nobody can handle all these problems. My husband certainly can't. He sees it firsthand, and that is enough. Doesn't need to talk about it. That's why I write a blog. But even here, I feel I have to "pad" it some, in order not to turn you readers off.

I have LOTS of leg pain tonight. I slept 23 hours yesterday, and I have lots of leg pain now. Those are signs of something Wrong. But, in order not to overreact, I am chalking it up to nerve pain gone to party. But inside I am scared. I just took a sleeping pill so I can go back to sleep and forget about it. No medicine I have will help it. Nerve pain has it's own little evil world with it's own special medicines that may or may not help it. I am on Lyrica, and that no longer helps it. It used to, but I maxed out. I skyrocketed it up from 150mg/day to 900mg/day in 9 or 10 months, and I maxed out. Now my [honestly special and good] pain doctor puts a decision before me on the table: "let's not go to the next level of medicines (Gabapentin), let's have you weigh out the decision again to do that plastic surgery to close the wound. That could tremendously help your nerve pain."
in my mind: He doesn't know that. Nobody can say that for sure. I may be in more trouble afterward than I am now. I feel it is cavalier for anyone to suggest to me to do a dangerous double-surgery (yes, it would take at lest two surgical procedures- one short and one very long one a month later) without a damn good idea clear in his head that it will *definitively* help.
Seriously- *more* surgery?

I have had a good recovery from the one I did three months ago, though. It is coming along well. Physical therapy is hurting less. I think I can say that I now have less pain now than I did before the surgery. My body has amazing healing properties, you know?

So this lag B'omer, with the waking-up from a coma remembrance, I can relate with my mother. Waking up is only the tip of the iceberg of getting out from under septic shock and coma. My mother doesn't have the surgical issues I've had to deal with these five years, but I don't have her heart problems to overcome. It all just sucks.

Why did Hashem make infections, anyway? Anyone care to offer up anything abut that?

I am glad this day is over. Now I wish the nerve pain in my leg today will go away as well. If, that is actually what it is. Only time will tell.


  1. Sarah, I don't know what to say except keep putting it out here. This is your blog. This is your life. You get to choose. This is one thing you have power over. Make it your own; good or bad.

  2. May Hashem guide you to the right decisions for a refuah shlaima b'korov.

  3. I would want to explore more deeply the doctor's concerns about the "next family" of medication. Maybe a second opinion (on that specific issue) would be good here? I'm not negating what he says-but I just would be curious what other experts in the field think. Also vis a vis another operation-I might want to consult with other experts to see if they think it could work.It's hard to fathom yet another operation-but then again, ..who knows? We love you Sarah. We are with you, and never censure what you feel!!!

  4. Sarah, this needs to be your place to vent. If others can't cope with that, that's their issue, not yours. And given all you've been through, and continue to go through, I think you're doing amazingly well.

    That being said, if YOU feel you're looking at the glass half empty too much of the time, place a couple of gentle notes around your home reminding you, and everyone else, to try to find things to be appreciative for.

    You never have to apologize for being you. You are awesome.

  5. Wow! I had no idea, Sarah. I also can identify with your feeling that doctors are pulling answers out of their nether regions a lot of the time. I think that G@d is probably trying to give you wisdom and help. He tends to whisper though and I'm sure you are praying, but listening is really important. G@d will help you make the right decisions and find the right path. He won't let you go. He has you in the palm of his hand. I'm sorry I've not prayed for you sooner. Please forgive me. I'll get my people on this one!

  6. Hang in there Sarah. I think of you often and keep you in my tefillot always.

  7. xxxooo to you and Mrs. Kashin. And to your family.
    Dev from NJ