Wednesday, April 28, 2010

Appalled

I just don't have words. Oklahoma just made a law that a mother cannot sue if lied to by her doctor about the condition of her fetus. A mother considering abortion is also FORCED to undergo an ultrasound and description of the fetus.

So that means that they are okay with what the doctor did to me. He said Aiden's brain defects were mild. Apparently the brain being squeezed into the spinal cord is considered mild if you are against abortion.

I wanted my baby. He was too sick to live and I wasn't going to force him to live against nature and undergo surgeries just to watch him die in pain. Assuming Aiden made it to birth which was not likely, I would have had no choice in him getting at least two surgeries immediately after birth. He would have been in constant pain and not lived long. I chose to spare him suffering and I am furious that any mother would be denied the right to make that decision.

I just don't have words. Here is the link to the blog I heard about this on - she has links to more information. I am too sick and angry to research it right now, but I plan to. I will send my medical records to those selfish pricks, not that I think it will do any good.

Emotionally numb, physically hurting

I think I am just on overload of crappy things to deal with. I can feel myself slipping into a deeper depression but I'm not sure what to do about it.

This past week my cat got hurt and I got in a big fight with my husband about paying for a vet. He still considers the cat a stray and doesn't want to spend money on it. I can't watch something else I care about die. I took him anyway and so far he is fine, but Sean won't let me keep him in the house (we are not allowed to have pets - if we got caught we could get evicted) so I am worried he will get hurt again.

I've been working more hours than I can handle and my back is killing me. The day before yesterday I started getting a sore throat and now it looks like full blown strep. I feel like I'm choking and swallowing is agony.

I so badly want to take 2 or 3 weeks off to give my back a break, get well, and get past my looming due date. I feel so overwhelmed right now that I am just shutting down. I'm trying to get through the next five minutes and then the next five minutes. I hate that because my daughter needs me and I just can't be there for her.

I need rest. I'm so tired of how much self pity gets dumped here, but I still need it. I still need to whine about how unfair and hard everything is right now. I hope you ladies don't mind too much.

Friday, April 23, 2010

Unbelievable

So, I'm thinking this MTHFR isn't so bad. I just take a vitamin for the rest of my life and feel better and not have any more horribly deformed babies. Sounds great.

But (you knew there was a but, didn't you?) my lovely, caring, eminately logical insurance company considers it (and any other med like it) a tier 3 medication. That means that it has the highest copay. So now I am up to four medications I must take every day to function (thyroid, folate, anti-depressant, allergy) for a grand total of $130 per month.

There is no way I can afford that - none.

So now I get to research drugs I can substitute for a cheaper copay and switch everything around. I can order all of these by mail and save a little more money.

I am Sick. Of. This. Shit.

If anyone knows anything about over the counter bio-available folate I am all ears.

Losing the genetic lottery and joining clubs that suck

I got my very last test resutls from the pregnancy with Aiden today. The last loose end to tie up.

I have MTHFR.

Fuck.

I was expecting it so I'm not devastated, but I am angry. How did I get so unlucky? I have endo, the CF gene, the MTHFR gene, ridiculously enormous boobs courtesy of my german great-grandmother, and probably insulin resistance. The MTHFR is treatable, but come on! I'm beginning to think I should have won a Darwin award and kept my genes out of the pool. I watch what my mother is going through and wonder if I want to live past 50. I don't want to be crippled and a burden to everyone when my daughter is only 20 years old. Granted I have things I can do to prevent the kind of problems my mom has, but just the fact that I have to do those things makes me so angry. I know I'm being ungrateful. I can still walk, although it hurts. I can still improve and get back to the things I enjoy. But it just seems like too much to ask that I have to deal with all the physical stuff on top of my grief.

And I am sick of becoming a member of clubs that suck. Don't get me wrong - the women in those clubs are incredible and have helped me more than I can say, but I don't think anyone would blame me for wishing I had never joined. I would never regret not knowing there are infertility and loss clubs.

I am actually going to have to limit how many support groups I'm in because I don't have time to keep up with all of them. How sad is that? I think endo and MTHFR are going to have to take a backseat to PCOS and babyloss.

I need something cute to laugh at - what have you got?

Tuesday, April 20, 2010

Stressed

I've been far too busy this week and haven't made time for myself. I became really snarly with everyone tonight and realized I just need some space. I need to breathe and be by myself. I wish I had a couple of hours to write, it brings me the most peace. To write I need more quiet and solitude than I can get in this tiny apartment with the TV on (damn I really hate that thing), so I will have to settle for reading a book - if I can find the damned thing.

I'll try to make time to write later this week. I had an eleven hour day today so I am owed some time off. Maybe Friday. I'm tired and I hurt, so much. I wish I could get some relief. This is just so damned hard.

Thursday, April 15, 2010

Homework

In therapy today I responded, "I don't know" when asked why I wanted to be pregnant again. My therapist gave me an assignment. I'm supposed to ask myself that question and I'm not allowed to say I don't know. She said to sit with myself in silence and let an answer come to me.

For some background - my therapist is very holistic. She thinks my recent back injury is related to my grief. I have thought that also. It's a pretty big coincidence that after 10 years of chronic pain I suddenly have a severe problem right in the middle of the worst part of my life. It could simply be that I have been more tense because I am stressed, but I wonder if it is more than that.

I told her I was angry that this injury has put off my plan to get pregnant again. We talked about how hard pregnancy is on me with my pain issues and that this injury would be unbearable while pregnant. She asked if I was afraid of being pregnant and of course I said yes, but she wondered if there was more to that fear than just the chance of something bad happening again. She wonders if my back injury was caused by my turmoil over deciding to try again. I have told her that I don't want to be pregnant, I just want the baby. But that is not totally true. I also have this feeling, more of a need, to finish the pregnancy. That was even how my husband put it, as if we could just pick up where we left off with Aiden. We know that's not how it works. Any future baby will not be Aiden, or replace Aiden, or even heal the hole left by his loss.

So why do we want to try again?

****crickets chirping****

Tuesday, April 13, 2010

I'm waiting

It seems like this whole reproduction gig is all about waiting. Waiting to get pregnant, waiting for the first appointment, the first heart beat, the first ultrasound. If you are unlucky there is more waiting. Waiting for amnio results, waiting for a second opinion, waiting for nature to take its course or for the medicines to do their job. After a loss is even more waiting. Waiting for the time to try again, waiting for more test results, waiting, waiting, waiting.

I am not good at waiting. I make myself crazy with what ifs and maybes. I very much resent this new waiting. I finally got an appointment with a family medicine DO. Hopefully he will order an MRI and I can find out if my back is fixable and what I am up against. Believe it or not surgery is probably the best case scenario right now. Given that I have already been in constant pain for 10 years, if this is not something that can be fixed with surgery then it will be "managed" with pills and/or physical therapy. With my current insurance and money situation that probably means very little progress and an indefinite delay in trying again.

I'm trying not to be too negative but I am used to doctors ignoring my pain and insurance companies being unwilling to cover procedures that actually work. If this is the level of pain I will have to deal with from now on there will be no more babies. I have to believe someone will do something. I can't give up. I feel like I need to hold a living infant to stitch up this hole in my being. I am scared that I am pinning all my hopes on my ability to bear another child. What if I can't? Will that failure be more crushing than Aiden's death was? I just don't know. And while I am waiting all I can do is wonder. Over and over and over again.

Whoopee.

Monday, April 12, 2010

Yep, definitely denial

So now that the pain meds have worn off and I finally have an appointment, I realize that I am not okay with this.

My appointment is with pain management. I really hate that kind of practice because all they do is give you more and more drugs. In my experience they don't fix problems, they treat symptoms. I would like to do physical therapy but because I now have numbness I can't do that until I get an MRI. My appointment also puts me square on the wrong side of my ovulation date this cycle. Yesterday I was thinking it wouldn't be so bad to skip this cycle since originally I wasn't going to start until June, but now I am just angry.

I've been trying for years to get someone to do something useful about my back. I have always gotten the run around. I have been dealing with this for ten years so you would think that I would be resigned to having to fight for care. I'm not, though. I'm tired, sore, frustrated, depressed, and broken-hearted. I just don't have the energy to fight this too. Today I am so tempted to accept the drugs, quit work, and just live my days in a numb fog of pain and depression.

I need something to look forward to and I feel like I am betraying my family because they are not enough. I need a reason to fight for decent care and get better. Why isn't my daughter reason enough? She wants me to pick her up and is very upset that I am too hurt to do that. Why isn't that enough motivation to get up and fight?

I did call and try to get an appointment directly with an orthopedic surgeon that specializes in spinal injuries. I haven't heard back and I'm hoping they take patients from the ER without a referral. I hope this bought of depression doesn't last long. I need to be at work, we have already lost so much.

Sunday, April 11, 2010

The news isn't getting any better

My crippling back pain of last week has gotten better in that I can move, and worse in that at times I can't feel my feet.

The second trip to the ER in ten days confirms my worst fear: a ruptured disk is extremely likely. I now have random patches of numbness up and down my legs and in the small of my back. The base of my spine has gotten so sensitive that my clothes rubbing on it feel like being stabbed with needles.

I find it hard to get upset about this because it's not a dead baby, but I'm afraid that might be denial. I am not looking to the future of surgery, weeks out of work (and thus no pay), and the indefinite postponement of trying to conceive. I feel like I can just take this as it comes and accept what happens.

However, I'm sure when I ovulate this cycle that numbness will change. I had planned to start trying this month. I can't risk a pregnancy right now, it could make things much worse. I am barely able to function even with all the pain meds, without them would be impossible. I sometimes catch myself thinking, "thank god I'm not pregnant."

For a bit of dark humor I will share my attempt at getting an appointment with a physician outside of the ER:

ER (last week): You need to get a family doctor

Every family doctor I called: we don't see patients with back pain, they would be referred to pain management, but only if already a patient

Pain management: We don't see patients without a referral from a family physician

Orthopedic surgeon (the same one that saw me for this EXACT problem after my car accident in 2001): Our physicians don't treat spinal injuries

The ER (today): You need to see pain management and get an MRI

At least after telling this farce to the second ER doc in an increasingly hysterical tone of voice I was referred to a patient advocate and a doctor that would supposedly take a referral from the ER. We'll see.

Sure - we didn't need that pesky health reform.

The irony is that if I quit my job I would qualify for medicaid and would have been taken care of already. I pay for my insurance and I can't get treated.

Thursday, April 8, 2010

The bitterness of longing

I've been doing better since yesterday. I think Catherine was right and I just needed to let myself grieve. But there is at least one thing that I think will always be hard. We stopped at Target to look for something for my daughter's 4th birthday. To look at the things for her we had to go through the baby section. The girl things don't bother me but the boy things always give me a strong pang of longing.

I've always thought the boy clothes were cuter. I am NOT a girly girl. You can have all the hearts and bows and butterflies, I'll take the bugs and safari animals any day. Now that preference makes it harder. I see the cute little monkey booties and I long for a little foot to put in them. I see the adorable green and brown bed set with a giraffe and I picture a small, dark-haired baby boy snuggled in. It gets me every time and there is little chance of avoiding it. I have to shop in that section to get clothes for Kira.

This longing is not very pleasant. It's a burning emptiness that I know will never quite be filled. I think I have decided to try again but I'm afraid now that I will be disappointed if it is a girl, and deathly afraid if it is a boy. Either way a hypothetical future child will not be Aiden, and I'm not sure I can ever accept that. Maybe that acceptance will come with time.

What about you? Do you accept that your lost baby is never coming back? Do you still have a feeling that this is all a bad dream?

Tuesday, April 6, 2010

I just want something . . .

I can never have.

I want my baby. I'm so sad and angry today. I haven't felt decent since last week. Throwing my back out on Friday probably extended this patch of deep grief. I couldn't go anywhere or enjoy the beautiful weather. It also didn't help that nothing is resolved at work yet, my nightmares are back again, my extremely painful period started yesterday (which fed into the nightmares, god I hate that), and I had to listen to a little boy happily nursing after he hurt himself. I remember those noises and how easy it was to fix a booboo at that age. The boob was magic. But not magic enough. Aiden never got a chance at that and I grieve for that too. They were ready and waiting but his body was already stuffed in a freezer somewhere.

It's weird, I'm fine around my friend's 5 month old but this baby, who is older, did me in. I guess it's because he is small like my daughter was and he has the coloring that I imagined Aiden would have. I always think of him as looking like me. Kira looks just like her daddy, she only got her eye color from me. I keep imagining that Aiden would have had the dark hair and olive skin. I sat next to the mom while she nursed and stared blankly at the movie, hoping I could hold it together until I had an excuse to leave. I still hear his contented little grunts in my head.

I just want to be somewhere else.
I want to stop crying.
I want the physical pain to stop.

I wish I had loaded my angry music on my ipod. I can't handle the sad music today. I kept poking my dammit doll in the face but the silly little smile was aggravating me so I turned it over.

I think I have cried more this week than the whole first month after Aiden died. The flood gate that Cheryl opened with her thoughtless complaining and lecturing has taken out the village below it and is headed straight for the big city. All the little hopes and moments of happiness I've built over the last three months have washed away. I don't have the energy to rebuild.

I know this gets better, but it's so hard to see from the bottom of this canyon. Damn this job anyway! It's fucking monstrous that I don't get sick leave and yet I work the same hours as everyone else. I can't go home because I lost so much time last week. Our account is already overdrawn and we don't get paid until Friday. I don't care much about money anymore but my daughter at least needs to eat. And I can't get to work if I can't buy gas.

*Edited to add: I just looked through my reader and realized that there were 3 births in the last week. All boys. I'm so happy those women got their live babies, but damn, that stings.

Thursday, April 1, 2010

Dammit

My appointment with the MFM specialist went well. He talked to us for an hour about the risks of trying again and how he would treat a future pregnancy. I was very relieved when we left and feeling much more hopeful. I spent most of the day in absolute terror because this is the doctor that injected Aiden's heart so the stupid uptight hospital would let me deliver instead of going 6 hours away to an abortion clinic. I was deathly afraid of going to that office again. It was the last place I "saw" Aiden alive.

It wasn't bad. Turns out a little compassion and respect can go a long way toward making a scared and grieving mom comfortable. What an amazing doctor.

However, as I was putting my daughter to bed tonight, I threw my back out. And by out, I mean not able to stand up, roll over, lift my left leg, lift my head, or sit up straight without screaming. I scared the crap out of my daughter and took WAY too many pills. I still can barely move. Looks like I will be spending tomorrow in the ER instead of talking to my boss about the evil bitch next door. FANTASTIC.

If it didn't hurt so damned bad I would be laughing about this. I did want an excuse to not go back to work tomorrow. Really, Universe, something a little less painful would have been sufficient.

Anyway, more details about trying again when I'm not stoned on pain pills. Wish me luck that this is just a bad spasm and not my compressed disc finally rupturing. That would be REALLY BAD.