Wednesday, December 31, 2008

Prescient

Cry if I want to? Why not just cry, have a good cry and get it all out.

Reasons,
Surrogacy shit
Lack of sperm shit
Health shit
Cost of health shit (I'm looking at 5K in bills on the counter)
Sarah's dad being an ass shit
Not having a calm and nice family holiday after we talked about what we wanted and how we were going to do it shit
MIL shit
In law shit
Birthday shit
Anniversary shit
New Year's Eve party shit

My bday yesterday. The high point was my mom and S making bagels. All went downhill from there. Frank bought me a card. He gave it to me at dinner, the one I planned, bought the coupon for, drove to, arranged, etc. No present, no chocolate, no flower, nada. Yet another birthday that the holidays stole. Sarah started whining about 25% of the way into dinner after she'd drank an entire mango lassi and had a tummyache, so we packed our food up and went home. She was a complete drama queen.

Do we go to an annual party tonight, where the kids all stay up late and we sleep over? Sounds kind of nice, except it's at our surrogate's house and everyone who will be there are who she announced the news to at our last visit. So if we go, it's nonstop questions till we either give a real answer or piss people off enough to stop.

I decided to get up because being awake at 5 am sure beat dreaming still. My dreams were all screwed up.

Tuesday, December 30, 2008

It's my party and I'll cry if I want to,,

Today I turned 34. It will be eleven more years until the digits in my age are consecutive. I actually went a good part of the last year thinking I was already 34, so I find it kind of funny that my mom and I had to verify age last night. Mom came up to watch Sarah so I could work yesterday and hang out for my birthday. She and Sarah made me bagels and coffee for breakfast, super yummy.

We dropped off a potluck lunch item at Frank's work for their end of year party and then hit the mall. I have been to a mall approximately 4 times this whole year, so it was a somewhat overwhelming experience. I didn't see the massive sales everyone has been talking about, just the regular after holiday stuff. I did buy two new pairs of shoes to celebrate my new mid thirties persona. Josef Siebel's and Ecco's. I'm officially an old european man. But my tootsies are so comfy.

No news on the surrogacy front for now, waiting and waiting for appointments and approvals and all that crap. I'm tempted to just sign up with an adoption agency to start the process, but know it's premature.

Short note about the holidays:
MIL mentioned she'd like twelve grandkids. I said, "oh you're 25% there". Her answer, who's the third, I only have two. (Frank's sis has two kids, we have Sarah). Niiiiiiiiice one grandma.

One of the aforementioned two kids saying to me, "you no have babies", "I had Sarah, she was a baby a long time ago." "No, you no have babies any more cause you broken." :stunned silence that she had been told something about any of this: "No, no I won't kiddo."

I drank a large amount of rum in the past two weeks. nuff said.

Monday, December 15, 2008

Karma,



Karma's a bitch. My guess is that the universe wants my partner to learn more and more what it's like to be me. The appointment for tomorrow was cancelled because the insurance won't pay for it. The coding was for male factor infertility from the SA, since our insurance covers NO infertility treatments they won't cover if the ICD 9 code isn't correct. So, I get to call insurance tomorrow and let them know about all the horrible things that could be the cause of the whacked out semenalysis and then do battle.
I'll probably have to have our GP refer under a different code. Generalized testicular anxiety is my preference.

Sarah's bday turned out great. We gave her an American Girl doll on her birthday. She was so surprised she cried. She said she didn't think we could afford something that big. She was so gracious. I am such a lucky mama. So far the doll has gone to sleep with her hair net on in her original box every night.

Her party was Saturday and we ended up with 23 people here. The chocolate covered peanut butter filled pretzels were the biggest hit, followed by the lemon cake and the candy sushi. I wish I had taken pictures of the sushi, it was really quite cute.

We did a mystery party for Detective Sarah and Frank stole the cake and put it in the dryer. We had a compass, magnifying glasses, a riddle and fingerprinting for each clue. The kids had a great time.

Wednesday, December 10, 2008

Not just a river in Egypt

So, we're clearly in denial over here. Not talking about it, not doing anything. F has an appointment on Tuesday to start figuring out what's going on. And there weren't exactly zero. There was one fragment. That means he must make some. Maybe. I've got my fingers crossed for a correctable blockage. And lots of narcotics for him.

Anyways, back to the denial I was talking about. Did you know if you go into the grocery store and buy:
Velveeta
Maxi pads
Swedish fish
Green fruit roll ups
Marshmallows
three whack em chocolate oranges
broccoli
garlic
cake flour
poppyseeds (originally typed as poopyseeds, har har)

The checkers don't even look at you weird.
I should have thrown some condoms in there for good measure. Oh, I slay me.

Sarah's birthday is tomorrow. She has requested lemon bars for at school and our neighbor's famous mac n cheese for dinner. Turns out our chef neighbor makes mac n cheese with velveeta. Here I was expecting a baked blue cheese gourmet treat and it's fakey fakey. I'm making candy sushi with the marshmallows, swedish fish and fruit rollups. And a lemon poppyseed cake for her party on Saturday. And, since I stopped the pill my period is here for the foreseeable future.

But hey, this marks 7 years since I went into heart failure, and I'm still here kicking and screaming.

Friday, December 5, 2008

The End

We got a call from the RE that there were no sperm in the sample. None.

Now our main focus is to make sure Frank is healthy and regroup.

It was so hard to tell him I know exactly how he feels. But I do unfortunately.

On our way

To the psychologist today. Doing our psych screening at 11:30. Now, how to seem normal and not crazy? That's gonna be tough.

But there's a bonus since we're going to San Rafael, we'll stop for cubano sandwiches for lunch at Sol Food. MMMMM. Maybe even stop at Muffin Mania and bring some home to Sarah.

I'm nervous, not because I think we won't pass, but because this person has the power to approve or disapprove of us and that is scary to me. I don't do well with allowing other people to make choices in my life and this feels very much like that. While I know she is only doing an evaluation and making recommendations, it still feels like she can really upset our rickety ship of dreams here.

When does this ever feel normal? Will I ever feel normal again, or is there always going to be some part that feels broken, weird, abnormal?

Thursday, December 4, 2008

And another one down

Frank did his testing and samples today. He said it was much more difficult than he thought it would be and weird. He also said the porn was all really old.

I am still on birth control pills till December 11, then off for five days, then on again December 16. Then on pills with the GC for a bit, then LUPRON.
I have another appointment on the 17th for med training and possibly some of the FDA donor stuff.

We go for our psych testing tomorrow. GC and hubby go on the 13th. Then the legal contracts can be finalized and we're good to go for meds.

They are ordering our meds before we sign final contracts because we're cutting time so close. If this first try doesn't work we'd like the chance to do another transfer quickly. Since our GC has a very set timeline she wants to work with, we're really moving fast.

But hey, We'll know in 6 weeks if we're preggo.

Monday, December 1, 2008

Legal

The surrogate was approved by our RE. Now we've just filled out the legal questionnaire and are waiting for the contracts. Then psych later this week. And we're good to go.

I've got goosebumps.

Sunday, November 30, 2008

On a lighter note

We're headed to the valley to celebrate Turkey Day with Frank's family. I made some kick butt cinnamon rolls, but the recipe made eight, yes EIGHT trays of them. So if you live in the valley and know me, there might be a cinnamon like surprise on your front doorstep later today.
I used the pioneer woman's recipe and added pecan's and green apples. YUUUUUUUMMM.

Now, just get through the visit.

Wednesday, November 19, 2008

Explanation for the title of last post

I was just reading that and thinking, "Hey, I never really got to my point in that long rambling diatribe."

Without further ado, Real, semi-real, fake. What place do those words have in parenting, especially in reference to the status of your children?

What got me thinking about it was the conversation with a friend that started the last blog post wherein she said, "Once Frank has a real child, he'll be so happy." Needless to say I mentioned that Sarah is very much real. But I knew her intent, even if her delivery was sloppy. My guess on her intended statement, "Frank will love having a biologically related child to see grow and marvel at the coincidences and quirks of nature and nurture." I was perturbed, yes. But will I end a friendship over it. Not likely, although I will be more careful about interactions that have the potential to hurt my kiddo.

There is, in my opinion, an underlying belief in this world that for you to be a real parent, you must have had sex, gotten pregnant, and then squeezed the infant out your vagina. Any other path is seen as "less than". "Not equal". "Not the same". From c-sections, to adoption, to step parenting, to fostering, to surrogacy, to egg donor adoption, to egg donor adoption, sperm donor adoption with surrogacy, gay partner adoption of baby via ivf and on and on there are many ways to be a parent. None of those ways are better than another, none convey a greater status, or love or statement of family. Some are harder than others, some are easier. Some convey greater intent to parent than others. But their validity is all there.

So, to all those who might ask, "Is she your real child?" I answer, emphatically, "Yes, as will be any child who comes into our family via any means." or maybe I'll just say, "Yeah, I squeezed her out my hooha, wanna see my scars?"

Friday, November 14, 2008

Real vs. fake vs. semi real?

What is the difference between parenting a biological child, a biological child via surrogacy, an adopted or fostered child? (even leaving out the constructs of race, class and how they will affect opinions)
What terminology is correct to identify the differences between these children? When does a person take offense at what's said, do they understand the underlying meaning?

I was talking with a friend regarding my in laws acceptance of surrogacy and how it would hinge on their knowledge about surrogacy. I felt that we should have been educating them about gestational surrogacy for a while before letting them know it was our choice. That way they would understand the science, see the benefits and come to accept our decision over time, instead of having a lot of information thrown at them quickly. I think if they understand the reasoning about why we're trying for this (a bio child is important to Frank, most likely BECAUSE of them) they would feel respected and honored. Instead they feel sad, let down and disappointed about the situation.

Why are we choosing gestational surrogacy? Why go through these hoops instead of adopting a waiting child? Number one reason, is that Frank wants a bio child. As a first generation child of immigrants family and family ties are paramount. Family traits and resemblances are legend in his family. He is much more modern than his parents, but still more traditional than I am. Number two reason is his parents. I feel my in laws won't accept a non biological child in the same way they would accept a bio child. Number three, it would be wonderful for Sarah to have a biological sibling.

I see a difference in how they interact with Sarah contrasted to their other grandchildren. I know that part of that is they haven't seen Sarah grow from a baby to a child. They aren't who I call if I need a babysitter or support or help. I know my distance from them leads to some of their distance from us. And for the most part, I'm okay with it. But I think a bio child or a non bio child, hell any way we put it, having another child is going to open up a can of worms with them.

My MIL has already mentioned that if our surrogate gets pregnant she wants to come talk to the baby all the time. Talk about boundary issues!! Umm, no you can't go visit our surrogate to talk to her belly. Not cool. We know you would be excited, but I wouldn't let you talk to my belly as that would cross my comfort boundary, so of course it wouldn't be something that is okay for our surrogate.

As a long time child care provider I can attest to the fact that your love for any child grows. Whether the child is biologically related to you or not, being responsible for that child, being that child's parent and caregiver is what matters. The first time I saw Sarah my heart wasn't overcome with adoration. I thought she looked kind of odd and was just so thankful that the delivery was over. But my love for her grew and steadily became this all encompassing force which I think would happen with any child. I know that adopting brings it's own challenges, but accepting a child into our lives seems like something we could do if surrogacy doesn't work out.

But then we have the fact that adoption is our third choice. Pregnancy was obviously number one, surrogacy number two and adoption three. What message does that send to a possible child? Yes, we love you but we tried all these other things before we found you. Since we couldn't do that, having you was "good enough". What load for that kid to carry, whether it's true or not, the underlying thought of being the third choice could be devatstating. How would we handle that to make sure an adopted child would feel treasured and cherished?

How would my in laws handle that? What type of relationship would they have?

Will I stop stressing over this if the surrogacy works?

Thursday, November 13, 2008

Cycling

So it begins. I had my day 3 FSH levels checked this week. Our gestational carrier will get her pretesting done next week. I think. It's all tied to cycle times etc.
I have normal FSH levels. Which is good. At least one part of me isn't screwed up.

If all goes according to plan and there are no screwups we will transfer between Jan 15 and Feb 15 2009. It sounds like a long wait, but it's less than 60 days.

I have a lawyer set up for the contracts, therapist set up for the testing and financing somewhat shakily arranged. I have picked the Canadian pharmacy we'll use for some meds along with the meds from our RE. I have researched induced lactation and set up my plan for meds once we get a positive pregnancy test. My OB is okay with prescribing the domperidone, even though we'll have to get it from Canada. She just wants to read about the Newman Goldfarb protocol before I start. The RE has been warned repeatedly about my heart conditions and the nurses have made large notes for my file about it.

I have started birth control pills to keep me from ovulating till we do the stims. What irony is it that I'm on the pill the month after having my tubes tied?

Frank's parents were told about all this last week. There's a whole post about that somewhere, but I doubt I'll ever write it. Needless to say, they are very disappointed.

Our GC is being very, very open about the surrogacy. She works at the same place my stepmom works, so my stepmom found out that we were proceeding before I was able to call and tell her. No big deal, but it does reinforce what a small town it is down there and how glad I am to have moved.

What haven't I done? Started believing this will actually work. Planned for how we will proceed if it doesn't work.

I foresee a very interesting holiday season.

Tuesday, November 4, 2008

Just heard this...

Rosa sat so Martin could march.
Martin marched so Barack could run.
Barack ran so our children could fly.

I have tears in my eyes thinking of what all this means. To me as a white woman who is the mother to a half black, half white daughter. To my daughter as she navigates life between these two worlds. With hope in my heart that healing is beginning.

Election Day

Have you voted yet? Starbucks and Krispy Kreme are offering freebies if you need some incentive.

I voted by absentee ballot, but today I went to the Democratic Headquarters in Solano to volunteer. I had my phone and charger, my bottle of water all ready to sit for a few hours and help. But alas, they were swamped with volunteers and didn't have a task for me. Who knew?

So I'm home instead, reading the paper, checking blogs, filling a few new orders (woohooo for people feeling better about the economy).

I have a yummy fun dinner planned that we will eat upstairs while watching election returns. I've got a bottle of champagne chilling and sparkling cider for Sarah.

I feel this is the most important election of my life to date. Possibly the most important election I will ever vote in. A true third party, centrist, female, minority candidate with a good chance of winning would be the only election in the next 40 years I could see trumping this one.

I am so proud to be able to say that America is ready. That the vast majority of Americans can look beyond race. I am proud to show Sarah a man who is like her, about to ascend to the Presidency of the United States. I hope my daughter grows up with the certainty that she can be whatever she wants, with role models who truly the reflect the diversity of America.

Yet, I am still disappointed by much I see in America today. When Sarah's dad and his girlfriend dropped off Sarah this weekend, they related an incident that happened at the restaurant here in town they had lunch at. (okay, crappy grammar, forgive me.) It seems the restaurant was almost empty, except for them and one other table of older white women. The white women kept moving across the room farther and farther away from them. The older women kept sending glances their way and whispering. It is despicable that this kind of fear and blatant racism still happens. A black couple with a young child eating lunch are the same as anyone else sitting and eating lunch. They aren't after your purse, your wallet, your life. They are eating lunch with their child. End of story. Get over your own fear and be respectful.

I remember those kinds of things happening often when I was married to Chris. I guess I had hoped that having a child around might temper people's responses. My bad for believing the best of people eh?

Friday, October 31, 2008

Halloween Pictures


Our Next President


The kids with all the pumpkins. Frank did "Pumpkin π" har har



Cowgirl Sarah


Sarah and her teacher, the Werewolf of London on the school costume parade.
They walked across the schoolyard, over the pedestrian bridge and down to the waterfront. Can I just say how much I love living here?

Thursday, October 30, 2008

Pumpkin Carving Today

Today's the big pumpkin carving day. I'm a bit obsessive about carving. I used to spend hours at Norma's house carving with her and the boys. We'd do at least 4 or 5 pumpkins. Not just faces, but the intricate template carvings.

Now today we're having a few friends over after school and I've already found my template:
www.YesWeCarve.com

I'll also do a silly one. Sarah's decided to make a Michael Phelps pumpkin with goggles and a swimming cap and flippers. She swims a little like Phelps, so she was super excited to see him in the Olympics and I guess he really made an impression.
Now off to make a gingerbread cake. Yummmmmmm

Wednesday, October 29, 2008

Ooh ooh, Mr. Kotter, Mr. Kotter!!

The headlines today should read:

Woman wears button up pants for the first time in a week.

That is all.

Monday, October 27, 2008

Meal Planning

Do you meal plan for the week? We started meal planning after Frank was laid off and money got much, much tighter. We'd always done some meal planning, but not to the obsessive degree that I do now.
Since there are only 3 in our family, leftovers can be a hassle. A full size dish feeds us twice usually. But no one wants to eat the same meal two days in a row. So our leftovers used to just rot in the fridge.

Now I freeze a half portion, pack lunches with portable leftovers or plan another meal with the base of the first meal.

This week we are having:
Monday:
Pizza night. Homemade pizza with whatever topping we can pull out of the fridge. The mozzarella I bought last week for lasagne should be used up with this. Salad and some other veggie side dish

Tuesday:
Salmon and quinoa with sweet potato french fries and another veggie. Leftovers will be turned into stirfry

Wednesday:
Stirfry frozen shrimp or tofu with leftover salmon and veggies. Brown rice , possibly potstickers

Thursday:
Pumpkin carving party afterschool.
Figs from the state park wrapped in prosciutto I had frozen from Grocery Outlet
Prosciutto egg cups
gingerbread cake
giant pot of pasta with leftover veggies, crispy prosciutto, olive oil and parmesan
Friends are bringins salad and another sweet

Friday:
Sarah is off with her dad for Halloween. :( But Frank and I will have leftover pasta, possibly like baked ziti and salad.

Saturday is up for grabs and I work Sunday. So I'll have to see what we can do for those days.

P.S. I voted today. :)

Wednesday, October 22, 2008

Home

I'm home. The surgery went well. My heart seemed to do fine, I don't have any swelling or shortness of breath.
I'm sore of course. the pain from the gas in my abdomen is surpisingly the worst.
it takes a while to focus on the computer screen and my eyes don't want to stay open.
back to sleep now

Monday, October 20, 2008

Deadline

Today is the last day to register to vote in California. Go out and make sure your voice is heard, whoever you're voting for.

Although, if I had my way, you'd vote for Barr not McCain. Just saying.

My tubal ligation is Wednesday. I haven't had the full weight of it hit me yet. I spent the weekend helping at the Growing Families Expo for Moms in Bloom and then cooking and cleaning yesterday. We now have meals for the week set and frozen.

Thursday, October 16, 2008

Presidential Debate

We went to the Solano Democratic Headquarters last night and watched the debate. What a great debate!
It was much more spirited and revealed so much more about the candidates than the previous debates had. I think Bob Schieffer (sp?) did a good job as moderator and got in some great questions. I think McCain showed a lot of anger and disrespect. I felt that Obama showed a very calm and confident manner. I do like Obama's healthcare plan, a lot. I freak out at the idea of McCain's Troops to Teachers. Oh, that pesky CBEST, shoot, we should just let anyone teach, especially those at high risk for PTSD and depression. Now, if he were to say, "Let's train these soldiers to put away the fighting mentality, train them to teach and get appropriate credentials and find a way to pay for all of it, then put them to work in the areas of most need." Now that I could get behind. But it all comes down to training and funding.

My WTF?? moment:

McCain using air quotes to say "health of the mother" as a reason behind abortion. I can understand why someone is totally anti abortion under any circumstances. Just say it. I do not shy away from discussing my views on abortion and the reasoning behind it, because I am secure and confident in my own decision making. Don't belittle half the human race by doing it in a condescending way. As someone whose health would be at risk in a pregnancy I call him on it. I emailed the McCain campaign to let him know my displeasure and my story.

You can see the youtube clip of this here. It's at 1:32 of the discussion.

And btw, no one is PRO abortion. Everyone seeks to reduce the need for abortions. Yes, I said need. Because if my pregnancy test before my tubal ligation surgery next Wednesday comes back positive, I will NEED an abortion. Not because I want one, not that it won't break my heart, not that any child wouldn't be wanted and adored, but because I want to live to mother my existing child.


From a recent Momocrats.com discussion I have this to say:

http://momocrats.typepad.com/momocrats/2008/10/go-read-it-mcca.html

Read the comments to see why I am posting this.

We as a society have a responsibility to behave a certain way. We all share this responsibility. No one side is always right, nor is one side always wrong. However, we need to treat each other with common decency and respect. Calling Sarah Palin a C*** on a tee shirt shows no respect. Yelling, "Sit down, boy" at a rally shows no respect. They are not equal statements, they do not carry equal weight, but they both must stop.

So this is my challenge to you, America. Do not lower yourself. Respect yourself and your neighbors by engaging in polite, thoughtful discourse. Name calling, race baiting(I'm looking at you Gov. Palin and you Sen. McCain and the lines of people with monkeys, signs and shirts at your rallies), spewing hate and misogyny (yes, calling anyone a c*** is misogynistic in my book) is not allowed. Now, go play nicely.

And Go OBAMA!!

Friday, October 3, 2008

VP Debate

Did you watch it? What did you think?

We made it a family night with Sarah. Since we are politically active, she knows who we support and why. But we've always made it clear that she is free to have her own opinion and support who she feels is the best candidate. She definitely went into the debate with a bias, since Sarah Palin shares a name with her. But by the middle of it, she was asking, why doesn't she answer what they ask instead of talking about something else, it's like she doesn't want to answer any questions.

BINGO!! Such a smart little girl already. I'm so proud of her for being able to see what many adults didn't see last night. She came to her own conclusions and truthfully, got tired of it and started playing legos by the middle.

I felt that Biden was sincere, passionate and did very well. I'm disappointed in some of the "mis truths" that he used, I've checked the fact checkers websites and found quite a few. However, I do feel that that is unavoidable, being up there, on the spot pulling facts out of your ass.

Palin did better than I thought she would, since I based my expectations on her last interview. She seemed together, well schooled in her phrases. Her "mis truths" were a bit more blatant, but all in all, not a bad job. She has really done her homework in the past few weeks. It's unfortunate that everyone was just hoping she didn't screw up instead of hoping for a real concise view of this candidate.
And if she would stop playing the damn "folksy" card, I'd take her much more seriously.

Here are some of my fave non partisan fact checking website that I check every day.

Fact Check
Politifact

Polling sites
Zogby
Gallup

Totally partisan and funny if you want to see what the extremists think
Drudge Report
Daily Kos
Foxnews

Monday, September 29, 2008

And it's Monday again

Sarah's echo and EKG came back normal. Well the EKG showed the possibility of some issues, but the echo ruled those out. Given all my marginal history the doctor agreed that it was prudent to have her come in every few years for echos to check, even though he feels she'll be just fine. She does have a functional murmur from the thallasemia. All in all, I didn't realize how worried I had been. Sarah was a trouper throughout though, she was scared, mainly because of all my heart tests but the doctor was awesome and explained everything thoroughly.

We volunteered at the school Saturday for a garden cleanup and mural prep day. We have now primed the wall for the still non existant mural. Now I just have to hope it doesn't rain too badly in the next month.

Friday, September 26, 2008

Friday To Do

There is an assembly at the school and Sarah is hoping she will win an award. Unfortunately, I know who is winning it this month and it isn't her. Sometimes it's hard to be a kid. After the assembly I am watching a friend's baby while she and her hubby go out for their anniversary. Then picking Sarah up from school, hanging out there with a picnic lunch and going to a garden meeting at 1.
Then heading home for an hour to work, drop off a resume, drop off samples, and get up to Fairfield. Children's Hospital has satellite offices, so we don't have to go to Oakland for the Echo. Her appointment is at 3:15 today. I've seen enough echos that I think I'll have a good idea about her status during the scan.

Then home, rest, pizza and movie night at our house.

I'm tired just thinking about all of it.

Wednesday, September 24, 2008

I'm back

Did you miss me?
Life kind of got in the way of any journaling there for a while.

We tentatively have a gestational surrogate. Shhhhh. Don't jinx it.

We wouldn't be starting a cycle till July of 2009 however. That seems so far away. But if the first cycle takes then we would have a spring 2010 baby.

IF we can afford it.
IF the surrogate says yes still.
IF it works.
IF I can handle the stimulation drugs.

So many ifs.

I'm getting my tubes tied. I don't want birth control and fear of pregnancy to ruin my life. So, sometime before the holidays I'll get it done. I've already got the call in to my OB/GYN.

I took Sarah to the doctor today. Her teacher had commented to me how tired she always seems in class. I've noticed the same thing, that she is just really, really tired during the day. She still sleeps about 11 hours a night. So we saw good old Dr. Brooks today and voila, her iron levels are at 9.6. Normal is over 11.5. Unfortunately she also has beta thalasemia so iron pills aren't likely to increase her levels. We can supplement to make sure she has the necessary building blocks to raise her iron levels, but I don't know that it will work. I think it's because my iron levels don't seem to correlate to when I have high iron/low iron diet or supplementation. Thalasemia sucks. Well, thal major would suck worse than thal minor. Given her father and my history of heart issues, the doc also agreed to my request for an echocardiogram.

The cardiologist he referred her to was mine. I'm not sure if I want this group to do her echo or if I'll try and change it to Children's Hospital Oakland. I'm glad we'll have a baseline echo to track changes and make sure everything is all right.

Work is iffy. No one seems to be buying in this economy. I got back from the ABC Show in Vegas and nada. The call backs and emails I was doing did a bit, but not much. Not very much follow through. Orders kind of sucked. And after the economic news this week there's no way I can start calling and pressuring stores, "Hey buy my stuff!!"

I'm going to try and find a part time job for while Sarah is at school. If I can just make enough to pay for the surrogacy, that takes alot of pressure off of Frank. It's not fair for him to bear the brunt of all this and the business just isn't making enough to pull in profit.

Wednesday, July 23, 2008

I am amazed

I received a bill from Quest Diagnostics for my latest blood test to check sodium and potassium levels (meds might screw those up).  It was for $196.  Hmmm, that's odd.  I thought it would be $10 for blood work.  I also received an Explanation of Benefits from Blue Shield saying that the test or procedure they were denying was experimental or unproven and therefore not covered under my kickass expensive we'll do this cause we have to insurance plan. Speaking of which we might switch to an HMO to reduce costs.  As of July 1 we have to pay 10% of all diagnostic tests, hospitalizations, ambulance rides etc.  I could see that getting very much out of hand.  I know that insurance is better than no insurance, but I also know that we will spend over $1000 out of pocket this month on that 10%.  I just have to do the research on my meds and doctors to find out if they are covered under the HMO plan instead of the PPO.

Hmmmm.  Experimental test??  Lemme check that lab requisition.  LP-PLA2.  Dr. Google here I come.  Hmmmmm, curiouser and curiouser.  I do believe that I was never notified about this test.  I don't have any of the risk factors to take this test.  Shocking, I know.  I seem to have risk factors for everything else.


I call the Cardiologist's office.  Medical billing lady says, let me go check the forms.  Hmmmm.  I'll call you back.

Prompt call back.  (shocking, I know).   (.). I always forget where the period goes with parentheses or brackets.  Ma'am, this test was a mistake on the part of our office.  Please read me the account number and contact phone for Quest so that I can take care of this for you.

Cue shocked silence on my part.  Then clear recital of all requested information.

I am amazed.  Someone, a doctor, nurse, tech, etc, ANYONE, in a medical position screwed up on my care or management.  That, in itself is not surprising, I forgive anyone mistakes.  What's amazing is that they owned up to the mistake and are making appropriate steps to fix the mistake.  Without costing me $196.


Tuesday, July 22, 2008

Off my meds

And no, I'm not non compliant.  I have an exercise stress echocardiogram and electrocardiogram on Thursday.  I'll get to sweat to the oldies and then see how my heart functions.  
For a good reading, UC Davis requires you to be off any beta blockers before the test. So, no coreg for me.  My blood pressure is already rising up from 105/75 to 145/80.  
Yes, I have  called my doctor to make sure I shouldn't take any other meds. 

So we might have more information on Thursday.  I'm hoping to see that my heart function doesn't decrease with exercise, that it maintains or goes up because of the higher heart rate and BP.  I'm also hoping to get back on these meds quickly.  I feel rotten today.  

Friday, July 18, 2008

Reproductive Endocrinologist

We had an early morning appointment with the RE today.  For those not in the know, a reproductive endocrinologist (say that five times fast) is the person who works with infertile (or just broken people) couples to achieve a pregnancy via IVF.  OK, so that was simplified, but hell, whatever works you know.  The RE, Dr. H  was very kind.  The office is kind.  The staff is kind.  It is all you could want from a place that will take a lot of your money and hopefully get you a baby in the end.

We will be doing IVF with ICSI with a GC.  What that means is that we will do a stimulation of my system to harvest enough follicles with ova in them to inseminate them via intra cellular sperm injection to create embryos.  Those embryos will be grown to 3-5 days age at which point 1-2 will be transferred to a gestational carrier.  Hopefully 1 or 2 will implant into her uterus and a baby or two will result.  The chance of twins is between 30 and 50%.  

The cost is between $20,000 and $70,000.  If we can find a GC who will do this out of the kindness of her heart it will be towards the lower end.  If not, well there's no way we can afford 70K.

Thursday, July 17, 2008

Delivery Stalled

I know I promised the delivery tale.  But, I didn't realize how much emotional energy it would take to type it up.  I will work on it and hopefully have it up by next week.  

In other news, Frank and I have a consultation appointment with the reproductive endocrinologist tomorrow morning at 7:45 sharp.  Sarah's have a sleepover with a buddy so we can get out of here bright and early. 

So tomorrow we'll begin our first step to surrogacy.  I'll have a physical exam and a dildo cam to view the uterine cavity, ovaries and tubes.  I don't quite  get why, it's not like I'm going to use them again.  

OB/GYN appt today

I hadn't seen my OB/GYN in a while.  I came in today to get BC pills to help relieve my anxiety about an unexpected pregnancy and the hell that would be.  

She was apprehensive coming into the room.  She looked terrified in fact.  She asked, "So,  what are you here for today, hon?"

When I explained the need for super effective birth control in our situation she said, "whew, thank goodness.  I thought I was going to have to convince you that pregnancy was a bad idea.  did you read the perinatologist's report??  You could die!!"

It might be morbid, but it made me crack up. 

Thursday, July 10, 2008

Pregnancy

No one had ever counseled me to not get pregnant.  When I asked at the pediatric cardiologist at my last appointment when I was 18, he said, "Oh, no problem."

We learned I was pregnant after C and I had broken up (once again, not a very stable marriage).  We reconciled and were ok, but not great through the pregnancy.  Early on I had a lot of weight loss, about 15 pounds the first trimester, that I gained back throughout the pregnancy, so at the end I weighed almost what I did when I got pregnant.  I was overweight, so no one was worried about it, least of all me.  
Second trimester went well, regular doctor visits, an echocardiogram to see how my heart was doing during pregnancy.  I had a LVEF of 70% at 16 weeks pregnant.  (That's good for those not addicted to echo results.)  My mitral valve looked OK, some regurgitation, but that had always been there, no other signs of problems. 
 I started having preterm contractions around 21 weeks.  I was working a stressful job at a travel agency and my doctor took me off to lower my stress.  I also started having higher blood pressures around then as well.  My anemia was worsening and I felt really, really tired (even moreso than the first trimester bone tired just pregnant feeling).
My doctor ordered more rest,  more red meat and relaxation.  We were vegetarian at the time and I remember C going out and buying the fixings for beef and barley stew.  It was hilarious to watch him cook the meat, like he was touching, well, dead meat.   I think that is my favorite memory from pregnancy.
9/11 happened while I was on bedrest.  I remember laying shocked, cradling my belly, wondering what hell I was bringing this new baby into.
Around 25 weeks, I started having edema.  Not too bad, but at the end of the day, no matter if I'd laid around my feet were HUGE.
The edema worsened to where it didn't go away overnight and I'd wake swollen.  My wedding ring didn't fit any more.  My shoes didn't fit anymore.  My skin felt tight and stretched.
My BP started inching upwards.  130/85, 135/85, 135/90.
I started feeling shorter of breath and blamed it on the baby pushing on my lungs.
I started sleeping elevated in the bed.  My body pillow wrapped around my side and three pillows under my head and back.
I started having more contractions.
I kept asking my doctor about all these things and he said, "oh, it's all normal, the baby is pushing on you, you're getting closer to delivery, no big deal."
I started having headaches at 30 weeks.  No visual disturbances yet, but headaches that would almost make me cry.
My feet and legs were continuously swollen now, my face was swelling, my BP was going up, but I wasn't having protein in my urine yet.  I was always at 0 or +1 during my pee tests.
At 35 weeks I was taken off any modified rest/relaxation plan.  Now it was time to regain my life, get moving again and get ready for the birth of this baby.
(Interesting aside,  my original due date was January 20, 2002, but it was adjusted to December 25, 2001 at the 20 week ultrasound.)
At 35 weeks, 1 day I made eggplant parmesan for my good friend Frank who came to visit with me and C.  We had a great time.
At 35 weeks, 2 days at 6 am, my water broke.
We went to the hospital, Kaiser Vallejo.  They confirmed it was amniotic fluid and not just me pissing myself. 
And so begins the delivery tale:

Young Adulthood, aka College and the bars

Young adulthood was memorable mostly for how many times I sprained my ankles, not any major health worries.  

I was a nanny for a variety of families from 18 till 30.  I adored taking care of the kids, have built great relationships with parents and just recently attended a High School graduation of one of "my" kids.
I went to San Francisco State University, studying biology, then switching to psychology and then dreaming of transferring schools to do a biopsychology degree.  I had a great group of friends, drank a bit too much, dated, had fun and enjoyed living in the bay area.

I met my first husband during my time at SFSU, we were married when I was 25, pregnant at 26 and delivered 2 weeks before my 27th birthday.  

Childhood History

I was diagnosed with a "hole in my heart" at age 3.  My parents were very young and didn't keep good records about what this meant.  I don't know whether it was an ASD, VSD or some other defect.  I was also told I had mild pulmonic stenosis, a narrowing of the pulmonary artery.  I was diagnosed with anemia at Kindergarten entry and prescribed iron pills, although it wasn't shown to be beta thalassemia till I was much older.

As a child I would much rather read than do anything else.  I started reading at 3 and have never stopped, although I don't spend nearly as much time reading now as I did as a child/teen.  Exercise and Physical Education classes were torture.  I would get out of breath and have weak feelings in my legs after minimal exertion.  My heart would pound and pound for a long time after class, especially the dreaded running the track.  

When I went to the doctor my pulse was always high, between 90 and 110 sometimes higher.  My blood pressure always ranged from 120/80 to 130/85.   My weight fluctuated from mildly overweight to mildly obese to teenaged eating disorder.

I started having headaches in my junior year of High School.  Then joint pains and swelling joints.  I was checked for Valley Fever, Epstein Barre, Rheumatoid Arthritis.  Nothing was helping.  I was taking medication for the headache pain, but I still didn't feel well.  I would vomit from the headaches, I couldn't hold a pencil because of the joint pains, I was tired all the time and felt like my head was going to explode.  
After about 12 months of feeling this way and seeing every doctor we could afford, having my parents almost lose their sanity because their normal daughter was in such pain, I got a new primary care doctor.  Dr. Toussaint Streat worked at Kaiser Fresno.  He said, hmm, let's check you for another virus that I know can cause some of these symptoms.  He ran a blood test and had a CT scan done of my head.  He guessed correctly, I had active cytomegalovirus and the meninga of my brain was swollen from it, causing the headaches and nausea and general feeling of crappitude.  Now that we knew what was causing me to feel awful, we were able to relax, focus on healing and the future.  
I started college at a local community college instead of one of the bigger schools that I had been accepted to, but I had recovered completely by the end of my first year of college.  


Wednesday, July 9, 2008

Family History

Mother:  Mitral valve prolapse with replaced mitral valve at 46 years.  High blood pressure.  Obese.  Arthritis.  History of addiction.

Father: Abdominal Cancer at 51 (desmoid tumors).  Obese. History of addiction.  

Brother:  Detached retina x 2 (both eyes, different events).

Maternal Grandfather:  Died of liver cancer at 65 (he was a mennonite, never smoke, drank or even swore).  Arthritis.

Maternal Grandmother:  MVP with no replacement.  Congestive heart failure.  High blood pressure.  Type II diabetes managed with injectable insulin.  History of obesity, now normal weight.

Maternal Great-Grandmother:  died of "heart problems"  at 36.  No further information available.

Paternal Grandmother:  obese, Type II diabetes (non-compliant), history of addiction.

Paternal Grandfather:  obese, MI at 40, 43 and death by MI at 45, heavy smoker and drinker.

Maternal aunt x 2:  MVP, no repair


No wonder I'm so fucked up.

History

This blog is my way to chronicle the journey through life with cardiomyopathy, valvular disease, beta thallasemia minor and other odd health ailments.  I read Echodoc's post a while back about not seeing things from the side of the patient and that inspired me to start writing what I'm experiencing.  Just to give caregivers an idea of what a patient goes through, a little background to the "unique case".
Gender:  Female
Age:  33
BMI: 30
Marital Status:  Married
Gestations:  1, delivered at 36 weeks due to spontaneous rupture of membranes and PIH.
Average BP medicated:  110/70
Average HR medicated: 65
BP unmedicated: 120/80
HR unmedicated: 110
Diagnoses:
Peripartum Cardiomyopathy (not for certain, if not then Idiopathic Cardiomyopathy)
Beta Thallasemia Minor