Saturday, August 26, 2006

Confession

They say confession is good for the soul. I've found that to be true, in most cases. Sometimes confessing feelings of insecurity and borderline insanity in a public forum, like this internet blog, can come back to bite you in the ass...as it did for me a while back.

I've also realized that I am more open about my thoughts and feelings in THIS space than I am with my own family. But something I don't talk about, primarily because I find it difficult to find the words in a face to face conversation, are my medical conditions and physical limitations.

I've lived in denial for many years, but the fact is, the damage from years of endometriosis growing out of control inside me, ovarian cysts, and polycystic ovarian syndrome (PCOS) have left me physically disabled. Since 1990, and growing steadily worse over the years, I've been unable to walk or stand for extended periods without intense pain that radiates from my pelvic region around to my lower back. Early on it was a dull ache that I could control with heavy doses of Tylenol. I can't take other forms of pain relievers because they are also blood thinners and once or twice a month I suffer from bleeding so heavy that it leaves me weak, lethargic and anemic.

Then in the early 90s I had a scare. My doctor told me my liver was enlarged. At the time I didn't tell him how much Tylenol I was taking on a regular basis (and back then they didn't know that heavy/continual usage of Tylenol can cause liver damage so two and two was never added together.)

I'd mentioned my pelvic pain to a few of my doctors over the years but they all chalked it up to female hysteria and normal period pain. Once again, my inability to articulate my feelings aloud in a face to face situation came back to bite me in the ass. A cyst the size of a football finally crushed one of my Fallopian tubes and cut off circulation to my ovary. The organ "died" and the resulting pain and blood poisoning sent me to the ER. The doctors (it took 3 surgeons to patch me up) told me how close I came to expiring. My recovery was extremely slow and agonizingly painful because of how large of an incision they had to make. Almost 13 inches across...I felt like I'd been cut in half. But I've told that horror story before.

I've just never talked about the fact that it all grew back...and then some. All the lesions, scar tissue, cysts, tumors and assorted crap they removed during surgery didn't cure me. Once I recovered from the surgery, it took nearly a year before I started to feel like myself again. That's when we started doctoring for infertility in earnest. No one ever told me that the hormones I was injecting myself with would kick start my endometriosis into over-drive (I guess I missed that part when I was doing my research).

Now? I have a condition known as frozen pelvis. All my internal organs are so matted and glued together with scar tissue and growths that my original surgeons won't operate on me again. I've been told to see a specialist. One who deals in female cancers. My mother (and probably other family members) think they won't operate because I'm fat. Nope. The doctor told me they perform hysterectomies on fat women all the time. But they can't GET to my uterus to remove it without risking perforation of my intestines and bowel. They are glued together in a solid mass and also glued, in spots, to my abdominal wall. As is my remaining Fallopian tube and ovary. My uterus and bladder are pulled out of alignment causing some other embarrassing side effects and, as I said before, intense pain when I stand, walk, or over-exert myself in any way.

That sure makes most forms of exercise a real treat. And without exercise, losing weight is a losing battle. Yeah, I go through phases where I try really hard to make better food choices and cut way back on portions and so on. But the other thing I have working against me is PMDD. My hormones are so out of whack. I have one good week each month where inflammation and pain in my abdomen is at it's lowest, and if I take it easy I can go about my day and act like a regular person. Then there is the rest of the month. Pain, overwhelming depression, lethargy, mental confusion...on and on... I've tried different medications, but couldn't take the side effects.

Certain times of the month I shouldn't even be allowed near a keyboard. It seems like it is at those lowest moments that my self-censor checks out and I post every twisted, paranoid, insecure, looney thought that comes into my head. Sure, it makes for entertaining reading. Until my rants end up tearing apart the family and hurting people I never intended to hurt. I thought I was showing how nutty my brain could be, but certain people took what I said as gospel. That these random hormonal over-reactions and depression fueled rants were how I REALLY felt and that they were directed outside myself. Nothing could be further from the truth.

And then there is the impression that my disability has left. I have to spend most of my time sitting down. Not because I *WANT* to, but because if I don't, my liver screams in protest at the volume of Tylenol I need to ingest to keep from screaming in agony. Ever have a butcher knife shoved up your privates? No? I have. How about a nail gun going off repeatedly in your anus? A tiny evil troll stabbing you in the small of your back with a screwdriver from inside your body somewhere? Yes. Just the motion of going from sitting to standing and you feel as if something inside has been ripped in half or a giant rubber-band has snapped and smacked you hard in some random location internally (adhesions snap and tear all the time.) And if you felt what I feel on a regular basis, you'd sit as quietly as possible and move as little as possible too.

So why don't I get stronger pain medications? I've tried. Many times in the past. But I get in a room with a doctor and suddenly I can't explain my way out of a paper bag. Now I finally have a doctor who listens AND reads between the lines. He doesn't hesitate or second guess me (or think I'm just a hysterical female who can't take a little pain with her monthly). But after being treated like I'm more in need of a "there, there" pat on the back and the comment that "all women go through this each month" type of attitude, I am ashamed to ask for help.

I am also ashamed of what people might think of me if they found out I was taking prescription pain killers. Since I am SO GOOD at expressing myself, face to face. In addition to coming off as lazy, selfish, stand-offish, snobby or not a "joiner", or GOD FORBID as being neglectful of my child...now I'll be a drug addict in everyone's eyes too.

I know, I know. I shouldn't be so worried about what others think of me to the point where I am neglecting my own well-being. But I've made such a mess out of my extended family relationships by not being open and honest with everyone. I need to talk more. I need to learn to express myself in mixed company and not just in writing on the internet.

If I am in pain or not feeling well, I should just TELL people that (and why). I should get the pain management I so desperately need. Hell...I should get the specialists and the SURGERY I so desperately need. I had a CT scan not long ago and they found a large mass that is starting to compress my intestines. I'm headed for a blockage and more emergency surgery if I don't act soon. I need a hysterectomy to stop the bleeding and vicious cycle of anemia.

Maybe if they clean up the mess in there and I get the all-clear that I don't have cancer, maybe I'll finally get some relief from this pain. Maybe I'll be able to play outside more with my son. Maybe I won't cancel forever our plans to adopt from China because I fear traveling with a group and not being able to keep up with all the walking. I've already traveled with a group in the past and I saw the damage I caused because people weren't aware of my disability and were left to make assumptions while I ended up just being a burden.

Maybe I'll get out of the house more. Maybe I'll be able to go back to my health club. Maybe I won't feel torn about adopting another child. 40 may seem old to some, not so old to others, but in my case I am starting to feel like I am not physically able to parent the way I WANT to parent. That's not to say that women who are disabled are "bad" mothers. I don't think I am a bad mother. I may not be physically able to keep up my house the way my mother taught me to. I may not be able to run or carry my child more than a few feet. I may not be able to stand long enough to prepare a full meal in my kitchen or wash dishes, but that's why I keep a stool in there. I can sit and cook. My son loves to climb up on that same stool and help.

I read to my son every day. We play games together. We have long talks about life and the world around him. He'll climb into my desk chair with me and joyfully send instant messages to my friends or play. Most important, he knows I love and cherish him.

Now I just wish I could summon the courage to see that specialist...have that multi-part surgery. In addition to the reproductive endocrinologist, there will need to be a colo-rectal surgeon and possibly a urologist to repair the damage to my bladder. I'm back to 3 surgeons and being under the knife for hours and hours. No chance they can do this laparoscopically. I'll be sporting another huge incision, more surgical staples than I can count to hold me together when they're through, another morphine pump, another week in the hospital, another torturous recovery. Only now? I have a child to think about. I almost had an infant to worry about too, if we hadn't put a halt to our China adoption plans.

I know what I went through last time. This time is going to be so much worse because of all the additional cutting, resectioning and organ removal. I don't react well to anesthetic (last time they had to intubate me because I was having breathing problems). I am terrified beyond reason and I know once John reads this, he'll know just how bad things have gotten. He will push me to make appointments.

My little boy needs me and this surgery could kill me. So many complications... I am just frozen with terror! My mother presses me every time we talk. She knows I need surgery before something escalates and sends me to the ER. Better to plan in advance. Line up the surgeons you want. Take things at a reasonable pace. In the ER, who ever is on call will cut me open, and they won't be methodical or overly cautious about it. Their job is to save me, patch me up and get me out of danger. NOT to repair all the things that are wrong, only the BIG thing that put me at risk. I sure don't want that again. I need the surgeons to take their time and get it ALL fixed.

God help me...I'm not ready to go yet. But I feel like if I have this surgery, it will kill me. The feeling is so so strong. But if I don't have it, I'll end up under the knife sooner or later. Is it better to enjoy what ever time I have with my husband and son and leave it to fate and the ER at a later date? Maybe years from now? Or do I tempt fate and potentially schedule my own death for a couple months from now. I know I sound dramatic. But if you'd been through what I have, you'd know just how real the possibility is.

I don't know if they'll read this... but I just wanted certain family members to know how sorry I am that I hurt them. They are right. I've always been awkward in social situations. I've never been able to tell them any of this so they would understand why I am the way I am. I like everyone in my family, I always have...and I just wanted to be liked in return and to feel like I fit in. I'm just sad that at a time when Ty and his daddy could really use their love, help and support; that I've managed to screw that up for them.

Once upon a time, I did extensive research on disability law. Long before we were blessed with Tyler and before I started IVF, before and during that horrible year of recovery after my first major surgery, I found out that I more than qualified under the American's With Disabilities Act. I was struggling at work because of all my medical problems. So many days when I just couldn't get out of bed. I forced myself and gritted my teeth against the pain. So many mornings spent huddled in the bathroom (before surgery magically cured my mis-diagnosed chronic IBS by removing some of the tangled mess that attached my intestines to my abdominal wall). I came so close to submitting those forms and having the Government forever label me as "disabled". But work gave me excellent medical insurance (thank God it paid for all my bills when I was hospitalized) and later it paid for part of the costs for our rounds of IVF (a very expensive process).

I always wanted to be a stay-at-home mom. But when we found out that adopting a baby was going to be a reality, the relief I felt was tremendous knowing that with John's encouragement and support, I was going to quit working. It was also a good thing I didn't submit those forms for disability. That would have been a HUGE barrier toward adopting. It isn't fair, but it's true.

So after all this rambling, what is my confession? I guess it's that I am disabled and I finally accept that as fact. Now I just need to find the courage to try and fix some of my problems. I also need for my extended family to forgive me for keeping so much to myself and for letting my emotions get the better of my common sense. This might be one of those times where someone should take my keyboard away from me. But all are things they should know. Even knowing the "why" may never fix the damage to my reputation, how members of the family "see" me, the opinions they have formed from the assumptions made over the years or from the hormone fueled psycho drivel I've written in the past. I just hope they will give me a second chance.

I need that. My boys need that.

11 comments:

Two Write Hands said...

I really admire you for that post.

unhinged said...

Becky, one of the things I've always noticed about you is that you seem to take personal responsibility for most of your family's misunderstandings. You seem to be so very hypercritical of yourself.

I wish and hope that you will be kinder and gentler with you, starting now. You deserve this and you need it.

My thoughts and prayers are with you.

Donna said...

My dear, NEVER worry about what people think. Nobody knows how it is to be YOU! Just do what you know to be right. God bless you.

Aria said...

Hugs from out here. We're thinking of you, wishing for the best.

jennifer said...

Wow Becky. That was a brave entry. And I honestly don't know what I would do in your situation. I really don't.

But I do agree with Andrea. There comes a point where we have the right to just flat out be honest about our feelings. How people react is their issue, not ours. I'm working at coming to that place now, and it's very freeing. And she's right; we are worth it. You most especially.

Kisses to Ty.

Anonymous said...

wow. it all sounds so overwhelming and you have been through so much. the last thing i'd worry about right now is what others think, what your family thinks etc. focus on you. tiny steps instead of the big picture. fix what you can right now. one thing at a time and you'll get there. netti

Dawn said...

So sorry that you are going though this extreme pain, mentally and physically. The older on gets, the less you care what other people think. Hugs and prayers,

Barbara said...

I am sorry that you are in so much pain. Unfortunatly pain in unseen and some people treat unseen disablities as if the person was making it up or over stating the pain. Unless someone has been in severe pain they haven't got a clue what real pain is. Sadly some drs fit in this catagory. I can relate to what you said about it being hard to talk face to face I have the same problem it can be very frustrating. I appreciate your honesty and openess in this article.
Barbara

http://journals.aol.com/beckerb6/myspot/

Karen Funk Blocher said...

Aww, Becky. I echo the others that you're being too tough on yourself here on the family issues, but I do think it's good that you recognize that some of it is your brain being...unhelpful.

On the surgery, I suspect that the fear of the unknown is getting yo you more than the feel of the semi-known would. Meetwith the doctors. Write down your questions. Better yet, print out the relevant parts of this entry and make them read it. That will help them understand and respond to your concerns.

Whatever you do, do SOMETHING. Don't put it off through sheer avoidance.

Hang in there. You'll be in my prayers.

(And now, since I'mso far behind in my blog reading, I get to see what, if anything you've done about the situation since writing this.)

Magogo's Musings, too said...

Oyouh, Becky, I am so sorry for all the pain, the bad doctors, the fear, and self-criticism. And, boy, do I understand much of what you are feeling. And I admire your courage in putting it all down for us to read.
I hope you will explore your options for surgery, and you know I'll be praying for you(in my own odd way!)
Love, Margo

Sara said...

Catching up with you m'dear. Read this entry and wanted to leave you a (((((hug))))).
Sara x