Wednesday, November 26, 2008

At A Loss

I am at a loss to describe how I am feeling right now.

I have a childhood friend who has had serious medical issues over the years. She has severe endometriosis, which is when the tissue that would ordinarily grow in your uterus decided to grow willy-nilly all over your insides, as well as on any scar tissue you may have, such as one from a surgery. When we were kids, before endo became a more well-known problem, many people poo-poohed her as she practically writhed in pain every month when her period arrived. As years passed, she lived in constant discomfort and growing pain. She has sought out medical help from many avenues over the years, and each step has made things progressively worse. One surgeon not only missed tissue that needed to be removed, but also botched the incision, sewing nerves into the stitches and leaving a staple inside her. The next doctor fixed that, and removed all the endo she had at the time, but it just came back, worse this time, because she had scars for it to attach to as well. Another doctor put her on hormones to put her into medical menopause, hoping to stop the growth of the tissue that would grow with every ovulation she had. These drugs drove her nearly nuts with longing for a baby, and the doctor told her that sometimes having a baby can reset the body so the endo will no longer grow. So, she went to a sperm bank, got IVF, and had a baby on her own (she hasn't had a partner in many years because of her illness, etc).

Far from resetting her body, the endo is now growing out of control, and since she ended up having an emergency c-section, she now has yet another scar for it to grow on. For the past three years, she has been reduced to living with her mother, who has no patience or understanding whatsoever, and basically living day-to-day on painkillers and prayers. Because of her long-term painkiller needs, her body has developed a crazy-high tolerance to medication, resulting in her being labled a 'drug seeker' by several ERs that she's gone to when she's tried to explain what she takes and why; they think she's lying and refuse to help her when she goes in, saying that she's in intense pain and her prescriptions aren't helping her.

Most recently, as a last-ditch effort, she has had a surgery to try and repair damage that was done during her c-section, and rather than make yet another incision in her abdomen, they went in through her vaginal and rectal walls. Don't ask me why, I'm not too clear on the explaination on this one, but apparently it's basically a desperation procedure that is only done when nothing else has worked. She had this operation about three weeks ago, spent a week in the hospital, and has been bedridden ever since in incredible pain. The medications she's on have completely upset her bowels, and her muscles have clenched so tightly from the surgery that she's been unable to use the bathroom normally since the procedure. She's had to use a cathader and attempt enemas on her own at home to move anything at all. Last night, she went to the ER because she had a fever and was in blinding pain, and was told after they heard what she was already on that they couldn't do anything more for her than had already been done, what she is already taking should be enough, and she should go home. As she burst into tears in the ER waiting room, the nighttime guard asked the attending doctor if she was OK, and the doctor said, 'oh, she'll be fine'. She is not fine.

She has been texting me a lot over the last few days, and I called her this morning. After we spoke, I told DH that I was afraid that she's going to die, one way or another. Minutes later, she texted me that she wished she didn't have her daughter, because it would be so easy to take a whole bottle of her pills and be done with the pain. I don't know what to even say to her anymore. She's a nurse, so she knows exactly what's going on with her, and what her prognisis is, and what kinds of drug options there are for her. Basically, she's looking at a life-long condition, and every step she has taken to try and fix herself has only made things worse. Living with her mother has been the worst thing for her, because her mother is one of those 'get over it' kinds of people who yells at her to get off her ass and get a job, but not one that is 'beneath' the family, whatever that means. I can't tell her that things will get better, because the words just sound trite. I can't even say I would blame her if she did do something drastic, because I can't imagine what I would do myself in the same situation - no support, no partner, a lost career, a child to support, no prospect of relief from pain... what kind of life is that? Obviously it's important that she hang on, for her daughter at the very least, I'm just saying that it's understandable that she feels that way at the moment.

I wish I knew what to say to her. I know listening is important, but in this instance I'm scared that it isn't going to be enough. She has asked me several times whether we would take her daughter if anything happens to her during various procedures, and of course the answer is yes, but DH said today that we might not want to even discuss that with her at this point, because it might give her an 'out', a feeling of freedom to take her own life knowing her daughter would be loved and cared for. What do I do? She lives hundreds of miles away, so I can't just pop over there, and at this time of year getting there would be difficult, but maybe I should do it anyway. I just don't know what to do other than just listen. It just doesn't seem like enough.


clueless but hopeful mama said...

Holy moly. I don't know what to say either. What a horrible, sad story.

I think you should be straight up with her. Say EXACTLY what you have written: you are extremely concerned about her, you totally understand why she is so low, you think she needs some serious support and you're not sure how to best support her from far away.

Does she have anyone else besides her mom who lives near her who you could call to help rally the troops? Does she have any childcare help? Does she have ANY sympathetic doctor in her life? Perhaps most importantly: has she ever had counseling to help with this incredibly sad and difficult situation??!?!?

Keep us posted. She is very lucky to have you as a friend.

Stimey said...

Oh, I'm so sorry to read this. It sounds like an incredibly difficult existence. It is shocking that doctors would react to her that way.

I agree with the above: She is very lucky to have you as a friend.

AndreAnna said...

I may not know much, but I know your friend is an incredibly lucky person to have you as a friend. Your compassion and love for her s so evident.

I wish I knew more what to tell you do - what to do.

But given your life circumstances, think you're doing the best you can.

And an "out" or not, the comfort of knowing someone you love and trust will raise your child is a gift not many people have. I wouldn't take that from her.

creative kerfuffle said...

i don't even know what to say that hasn't been said. i'm incredibly sorry for your friend and wish i had words to help you.

Melissa said...

This story is absolutely upsetting to believe someone is going through something that bad and no doctor is caring enough about her, I can not imagine the pain she could be going through but she is one brave woman. I agree with Anna with letting her know that you love and would love her daughter for her,

What a weight you must have on you, you both are strong people to have to deal with this situation. Makes people like me feel more grateful about my life and health.

Hope for all the best, to you and her! Let us know how she is doing and if there is anything else that she can do, or we can do!

Swistle said...

This makes me wish I were (1) rich and (2) street-savvy. I would start sending her a regular supply of STREET DRUGS to help with the pain. I just feel desperate to help her.

Kelsey said...

I'm so sorry - it is awful to know a friend is in pain and not be able to do anything very concrete to help. She is so lucky to have you to lean on, even from a distance.

If it helps I'll pray for peace and healing for your friend.

LoriD said...

How awful and sad. If you can swing it, maybe you should follow your instinct and go out to see her. Just knowing there's someone out there who cares as much as you do must be comforting.

clueless but hopeful mama said...

Sorry, I've been thinking about this since I read it. I just wanted to add that I have a friend with a degenerative condition and she has a great support group that helps her tremendously. I wonder if there's a support group for people in pain in her area, perhaps it would help.

Kristi said...

I wish there was something I could do or say. What an awful situation. I can't believe You and your friend will stay in my thoughts and prayers!!

Sherendipity said...

I'm sorry, honey.
There's nothing that I can say that hasn't already been said, and words just don't seem to be enough.