Things that make you go hmmm...

I borrowed this entire post from Waiting for Our Miracle. She has managed to capture all of the feelings that I am incapable of expressing...

What People Would NEVER Say...

So, what do you think people would say to you if you were paraplegic instead of infertile?

1. As soon as you buy a wheelchair, I bet you’ll be able to walk again!

2. You can’t use your legs? Boy, I wish I was paralyzed. I get so tired of walking, and if I were paralyzed I wouldn’t have to walk anywhere!

3. My cousin was paralyzed but she started shaving her legs in the other direction and she could walk again. You should try that.

4. I guess God just didn’t mean for you to be able to walk.

5. Oh, I know exactly how you feel, because I have an ingrown toenail.

6. Sorry, we don’t cover treatment for paraplegia, because it’s not a life-threatening illness.

7. So… when are *you* going to start walking?

8. Oh, I have just the opposite problem. I have to walk walk walk – everywhere I go!

9. But don’t you *want* to walk?

10. You’re just trying too hard. Relax and you’ll be able to walk.

11. You’re so lucky… think of the money you save on shoes.

12. I don’t know why you’re being so selfish. You should at least be happy that *I* can walk.

13. I hope you don’t try those anti-paralysis drugs. They sometimes make people run too fast and they get hurt.

14. Look at those people hiking… doesn’t that make you want to hike?

15. Just relax, you’ll be walking in no time.

16. Oh do my legs hurt, I was walking and walking and going up and down the stairs all day.

17. I broke my leg skiing, and was on crutches for weeks, and was worried I’d have a permanent limp, but I’m 100% healed.

18. I’d ask you to be in my wedding party but the wheelchair will look out of place at the altar.

19. You’re being selfish, not coming on the hike with us, and looking at all of my track & field trophies.

20. Don’t complain, you get all the good parking places.

21. If you just lose weight your legs will work again.

22. If you would just have more sex, you could walk!

23. You don’t know how to walk? What’s wrong with you? Here let a real man show you how to walk!

24. You are just trying too hard to walk. Give up, and then you’ll walk.

25. Here, touch my legs, then you’ll walk!

26. Just take a vacation, and the stress-break will be sure to get you walking!

27. When *we* were young we only had to worry about having to walk too much.

28. And I bet a paraplegic going to a bookstore doesn’t find books about paralysis stacked next to all the books on running…

So here’s a little hint. If someone you know tells you that she’s trying to get pregnant and it’s taking longer than expected, DON’T tell her to just relax. Don’t tell her to adopt and then surely she’ll get pregnant with her own child. Don’t tell her that God has a plan for her. Don’t say, “At least it’s fun trying!” Scheduling sex with the person you love isn’t fun. Getting vaginal ultrasounds every other day and intramuscular injections in your ass twice a day isn’t fun. Finding out every single month that – yet again – it didn’t work this month either is Just. Not. Fun.

DO tell her that you’re sorry she’s going through such pain/grief/frustration. Do tell her that you’re glad she told you. Do tell her that, even if you don’t bring it up (because you want to respect her privacy and understand that she might not feel like talking about it sometimes), that you’re there for her if she ever wants to talk or vent.

And DON’T feel that because she told you that it’s okay for you to tell your other friends, children, co-workers, neighbors, cousins, mailman, whomever--unless she tells you that it’s okay to do so. Your need to share news pales in comparison to her need to maintain a shred of privacy and dignity. The last thing your friend needs is to be at someone’s garage sale and get unsolicited advice from said secretary’s sister’s cousin’s dogwalker’s barista about how she and her husband just need to get really drunk one night and jump in the back seat of the car. Because she’s probably already tried that, too.

A Hope Deferred...

No news is not always good news. I have made no progress with my plan. In fact, my body has totally foiled the plan and left me with nothing.

It has been two years today since the last time I was truly happy. Tomorrow is the two year anniversary of the day our world crashed down around us in a whirlwind that has not stopped spinning. I have lost more friends than I knew I had. I have no direction, no drive, no hope. I am surrounded by people who don't understand. Heck, even I don't understand most of the time. I am angry for no reason and at people who don't know any better. The lady at work who is pregnant with #3 and complaining already at only 6 weeks doesn't know any better. The 26 yr old in the hospital willingly dying of diabetic noncompliance who will leave behind two young children doesn't know any better. The sister-in-law who I cannot speak to doesn't know any better. I guess I should say they don't know any worse. This is how it is supposed to be. This is life.

If that is life, then why is mine unraveling at the seams? Why do I have a disease that prevents me from getting pregnant? Why does my 26yr old husband have an auto-immune disease that he will have to live with forever? Why has that disease already begun destroying his liver? Why are we so far in debt when we own virtually nothing of value? Why is there bad news around every turn? How do I continue to trust when it seems no one is listening?

I Have a Plan...

... but that's all I have.

No wondrous news here. I know most of the time when someone goes completely silent for weeks on end, they come back on with a smile and a tiny announcement. However, my big news is not so exciting.

I officially have PCOS. On ultrasound, my ovaries looked like they were winning a game of chubby bunny and labwork shows no ovulation this month. That's actually nice to have some validation that I'm not just peeing on the wrong end of the stick. In three days, I have had my initial appointment--first time ever meeting my new RE, labwork, ultrasound, two hour glucose test, two prescriptions, AND I already have all lab results back and I didn't even have to call for them! I have never had a doctor that was this proactive. She offered genetic testing for both of us as well just to be sure that we don't have a tendency toward a chromosomal abnormality. We also have a tentative plan for July and a follow-up appointment in exactly a month where we will actually decide how to proceed.

All of that makes me feel a little better; however, even with my suspicions that I might have PCOS based on Dr. Google and my own symptoms, it still hurts knowing that my body is responsible for all of this infertility heartache. It has given us a tiny smidgen of hope to see that the RE is encouraging and seems comfortable with treating us. It is nice to follow someone who is confident.

It is the worst possible timing though. My husband has been sick for six weeks with an unknown illness that causes around-the-clock abdominal pain and other not-so-fun symptoms. We can't get him in to see the doctors fast enough. He is also having to close down his business so he will be without a job. He has not been getting paid regularly for the last 9 months so I don't think it will be a huge change for us financially, but he is very concerned about what he will do now. He has always worked in jewelry and there are no other jewelry stores in town that are faring any better than he is, so he will have to find something completely new.

So, we will continue to do what we have been doing and put one foot in front of the other.

I don't think I can handle much more than that.

Knowledge is Power

I honored her today.

I have enacted a change that, while it will never bring her back, might help to ensure that no one I work with will have to go through what I have been through.

I discovered yesterday through a long series of events that I have unwittingly been exposed to numerous antineoplastic agents and chemotherapy drugs throughout my two years in my current position. The major side effects of these types of drugs are fetal abnormalities and infertility and increased rates of both have been reported in nurses and pharmacists who handle these drugs.

I used to rest in the fact that nothing I did or could have done changed my daughter's chromosomes. Now I know that is not the case. Now I will forever have to wonder.


I never knew that touching the outside of the sealed vial or box could expose me to harmful chemicals. However, now that I know, I am changing the way our pharmacy receives these types of drugs so that no one else will be exposed.

It's all because of her.
If she hadn't been, I would never have known.
If she hadn't been, this policy wouldn't have been changed.

If she hadn't been, I wouldn't have been changed.

Be better

Maybe it’s time.

Maybe I really can’t do this alone.

My dad called this weekend and wanted to take me out to lunch. I went and after an hour of chit-chat, he asked the loaded question; “So… How are you?” What he was really fishing for is whether or not his actions following Raelyn’s death were contributing to my sadness. After spilling a deep, dark, family secret that I wish I didn’t know, he then used that story to justify his actions (never talking about her, not wanting to see her or pictures of her, not acknowledging that he has a biological granddaughter). Next, he proceeded to tell me that I am only 25 and that my life is not over yet. Apparently, I just need to quit trying, sit back, relax, and enjoy the ride. (Oh, and I also need to go to the gym, work out, and lose some weight so that I will be ready when the time comes. Thanks Dad!) When we were leaving Chili’s, he said “Be better. Relax and do whatever you need to do to be bright and shiny Dana again. Be better.”

Later, my husband tells me he wants us to be happy again. He wants us to be able to have fun and just be happy. I know how to be depressed or pregnant. There is no in between. Unfortunately, I really think my happiness is tied to a baby. I don’t know how to differentiate the two. I started trying to bring home a baby in April 2008. (I know that so many of you have waited even longer than this, and I am sorry for that. I cannot even imagine. I wish we could all have the families of our dreams today.) I don’t know how to move forward. It’s like reliving the same day every day. I wake up not pregnant and all day I am trying to think of ways that I can move in that direction. I am literally stuck. (TMI alert: Apparently AF will not be enticed with candy or progesterone. No clomid until then.) I am running out of time for a 2010 baby, not that that matters all that much, it’s just another failed milestone.

I am seriously considering counseling of some sort, but I am afraid of going to see someone at our church because of our past experiences. I don’t want everyone in the church to know what is going on, nor do I want someone to pat me on the head and tell me to just relax because this is all part of God’s plan to prosper me. I need someone to go to the dark place with me. To force me to remember and help me figure out why I can’t move forward. I need someone that I don’t know, but that I know I can trust. I need someone that I don’t have to see in my everyday life, but I need someone to whom I can relate. Have any of you sought help of any kind? Your words of experience are appreciated.

Maybe it’s time…

Are you freaking kidding me?!?

Really??

And I'm doing everything right??

http://abcnews.go.com/Health/Wellness/incredible-sperm-survived-oral-sex-knife-fight-impregnated/story?id=9732562

Hmmm...

Paraphrased quote from last night's Private Practice episode:

Depression isn't not knowing that you have something to live for. It is knowing that you should feel different, but you don't.

Hmmm... Yup.

For those of you who are TTC...

I wanted to let you know about a giveaway that seems promising (and painless so I would probably try it even if it didn't sound promising :-) Kate over at Busted Plumbing is giving away an iPod shuffle with the Circle + Bloom Fertility Relaxation program loaded on it. I had never heard of this but the concept makes some sense. There is a free download that I now have, but I haven't listened to it yet.

I will let you know...

January 26

***Updated to add... I had a good cry and considered deleting the post, but I need to leave it to show myself that the bad days will come and that's okay, I'll get through. If you don't want to read my rant and possibly be very offended, you should stop here.



Today should have been her first birthday.

Lots of toys and dresses, family all around, first taste of cake and pink icing.

I should be finding the perfect dress for the Child Dedication Service next Sunday.

I am really not wallowing everyday, but little things like the dedication announcement throw me for a loop. Grief at 16 months is not what I would have imagined. Most times it is a dull ache and yet in an instant I am pierced through. It isn't so much that she is not here--it's that there is no one here. Raelyn is safe in Heaven's arms and I know that I will see her again, but I cannot fathom that 14 months of nothing-ness have passed. I know that it is unlikely that Raelyn would have made it to her first birthday, but she should have had a younger sibling by now. It could be so much worse. I know so many of you have had miscarriages that compound your loss or have been told that there is no hope for more children. I cannot imagine what you ladies are going through. I only know my personal struggles and for me, (please forgive me for what I am about to say), the nothing-ness is killing me. No answers, no alternatives to the plan. I am seeking help, but they can't even read my chart before speaking with me so that the nurse knows not to sound so cheery when she says "negative". I hate waiting for nothing. I hate planning my life around those never-ending two weeks. I hate that I am so angry at my own circumstances when there are so many other things that could go wrong. I hate that I can't even articulate my own feelings without sounding like a whiny child. I am angry that with all the technology in this world, doctors can't find a way to give us all what we really want. I hate that I can't even talk about my feelings and hunches and what might be going on at any given point because I don't want to get my husband's hopes up. I hate seeing him crushed month after month. I hate that I let my own hopes get up, only to drown again. I hate that relying on God is so hard sometimes.

I know I said in my last post that I was better and that I had some perspective on my own life and mortality, but... living with loss is a daily struggle to find the good, and some days, most days, I fail.

Perspective

I have been feeling really down lately and have not posted because I didn't feel that I had anything new to say--just the same old sad complaints with one more failed month (with meds) to add to the list.

However, I found out this morning that a friend of mine was diagnosed with stage 3 invasive breast cancer. She is 25 years old (my age) and is in pharmacy school and planning her wedding for the end of the year.

I have no words. I cannot imagine. It's just not fair.

For all my complaining, I am still healthy and I have been blessed so far beyond what I deserve. I am going to try to be a more positive person and live life rather than just get through.

Please send up a prayer for my friend if you can.