One woman doing her part to break the silence that surrounds infertility.
Saturday, August 27, 2011
Me, DH, and Irene (Plus 3 cats)
Spent the day mostly doing preparation we didn't get done last night...a few last minute loads of laundry, a few more things to gather for our evacuation kit and my deployment kit. We definitely do not expect to evacuate, because we're unlikely to get flooded (didn't get flooded during Isabel, which was worse), we're prepared for a power outage, and the one road off the peninsula I live on is probably already flooded anyway. Not sure if I'm going to get deployed with the MD Defense Force...since I'm on the mental health team, it probably depends on how crowded and thus crazy the shelters get. Some of our engineering unit is deployed on the Eastern Shore, but no one else can get there except by going the LOOONG way around because the Bay Bridge is closed now.
Tomorrow I'll probably get around to random things. We did a little bit of random stuff today, like putting together and hanging part of the World's Largest Crossword Puzzle that DH got me a couple of years ago, and he did random organization in the office. I folded all the clothes that had been scattered across the guest bed, so I feel somewhat accomplished. The big thing I want to do tomorrow is shelve all the books I got at Borders last weekend. I know I sound like I work in a library, but I have enough books to seem like one. I had told DH in January that we needed a new 6 foot bookcase because I had too many stacked in random parts of the dining room. I think I can keep from overflowing this one with what I have now...
As I looked at my meds to pack them for if I go anywhere, it struck me how weird it is to be taking Pills and prenatal vitamins at the same time. :-p
Slamming on the Brakes
I got a call this morning from the doctor. Not the nurse. The doctor. My genetic testing had come back. I figured I wouldn't be a carrier for any genetic diseases since there was no family history and I wasn't a part of any at-risk group. So much for that. Apparently I'm part of the 1 in 50 that is a carrier for spinal muscular atrophy. So now we have to get DH tested before we can proceed with IVF.
Under ordinary circumstances, this would take 3-4 weeks: time to order the test, get the kit sent to us, mail back a sample, and about 2 weeks for processing. However, we aren't sure if DH's insurance covers it. Which is better than being sure it doesn't...we have a chance because the test isn't necessarily for infertility. If it's not covered, we'll wait a little longer to see if DH's new insurance covers it. Yes, new insurance. He starts a new job on 9/26. For those that know us in person, you'll have to ask him about it.
I asked one of the nurses whether I should continue taking my Pills until we are able to start the cycle or if I should stop them instead. She told me that I could do either one and that some people prefer to get off of them as soon as they can because of side effects. Um, no, I'll keep taking them, thanks. The worst part of TTC (until it reached the point of IF) was not having the Pill helping to keep me out of pain. Besides, the nurse mentioned that if I kept on them, we could start the cycle whenever we had the test results since we wouldn't have to wait for me to take the Pills for 2-3 weeks. Because of that, I don't have to start the cycle at any specific time of the month, which makes it easier to control (in a broad sense) when all the appointments end up falling.
From what I've been told, it's not that big a deal even if DH shows up as a carrier for the same thing as me. We would need to use PGD to make sure that no embryos with the wrong genes are transferred. I shouldn't have any problem having enough embryos to still transfer, given the number of antral follicles I had.
At this point, the main thing I feel is stunned and jarred, as if I really had slammed on the breaks when driving on the highway. I had a few tears come to my eyes as it hit me that we had to put this off, but I haven't broken down crying or anything. I don't know if, as it sets in, I'll be sad or angry or what. What does bother me is that putting off the cycle decreases the chance (already small) of DH's dad getting to meet a grandchild. He's got a year at most left unless a miracle happens, and a year is with chemo that would be utter hell to go through.
As we were watching hurricane coverage tonight, DH noticed again an ambulance-chasing commercial for people who had given birth to babies with defects after taking antidepressants during pregnancy. One of the antidepressants mentioned was Zoloft, which I've been told by multiple people (including my psychiatrist) is safe to take during pregnancy. DH raised the question of whether taking medications at all during pregnancy is a good idea. Like I told him, it's a very small percentage of people that have problems, but then again, it's a very small percentage of people who are carriers for SMA, too, which makes me less confident about trusting to chance even when the odds are that stacked. If I was to do it without meds, I could. I made it through worse than those hormones without meds. The biggest issue would be DH's reaction to me, though. He already worries enough about what pregnancy hormones would do to my depression, since a bipolar friend had to be off work for about 9 months after giving birth to get her meds straightened out. I told him I'd ask one of the prescribers at work what she thought, and we would make a decision over time based on that. I'm fine with the idea of being off meds...my original plan was to try to do it med-free. I only went on the Zoloft when I felt myself dipping into an episode after losing a friend to cancer. So, we'll see.
Friday, August 26, 2011
On Pins and Needles...
After that, we had the injection class. DH was the only husband there, which he and I both thought was interesting. Then again, I was the only one there who knew she was way too scared to be able to do the injections herself. I must say, I was shaking looking at the needles, but we both learned.
When I got to work, the receptionist told me that my box had come. I was confused at first because the pharmacy had told me there would be some in the box that were in foil bags and needed refrigeration, but there were no foil bags in the box. I called the pharmacy and found out that one type of one medication needed to be refrigerated, but I had been given the kind that did not need to be kept cold. My Gonal F will need to be refrigerated once it is reconstituted, but not before.
Two weeks before the shots start...
Thursday, August 25, 2011
Warp Zone
Tuesday, August 23, 2011
525,600 Times 2
Although I don't usually consciously think about it, babies develop and change so fast that it's like I can see the impact of time passing (as it feels fast and as it feels slow) in their development. We first tried to have a baby almost exactly 2 years ago. The babies of friends that were born in the first few months of TTC are full-fledged toddlers running around. A year ago was when we were getting the tests that didn't end up being paid for and around when a baby would have been born if we had been like most couples and conceived in the first few months. The babies of friends that were born then are walking and talking now. I don't get into thinking, "If we'd had a baby in X month, it would be this old now," but the ages of my friends' babies still make an impact on me without directly triggering that thought process.
On another note, I'm wishing good luck and baby dust to my friend A as she has retrieval in the morning!!
Monday, August 22, 2011
Beginnings?
Saturday, August 20, 2011
What To Expect
Sunday, August 14, 2011
Next Steps
Um, yeah, then we get to the really fun part, the needles. They tell me that the needles for most of the injections are small, only half an inch or so. Yeah. I'll believe that when I see it. They also tell me that I'll be able to do most of the injections myself. DH and I looked at each other at that point and laughed, knowing that he'll end up being the one to do the injections. My mom was suggesting I do them myself to prepare for the day when I might have to do insulin injections. We'll see, Mom. Maybe by the time I get to the second or third IVF cycle. The grand total is somewhere in the vicinity of 7 bloodwork visits, 10 gonadotropin injections, and one more major injection (the trigger). Then I get sedated for egg retrieval and a day on bedrest after embryo transfer (several days later). The trigger will be somewhere around September 23, with retrieval around September 25. DH and I were planning on going away that weekend for our 5 year anniversary and his birthday, but instead we'll be hoping to create a birthday present for him.
I mention "hoping to" and multiple cycles for a reason. Given my stats, my chances of conceiving in a given IVF cycle are 50-60%. At the same time, I know that the chance of not succeeding on the first try is thus 40-50%. I also know that most people don't conceive on the first try or conceive and then miscarry. However, many people who don't conceive on the first try do succeed on the second or third try.
The mention of miscarriage brings me to a request that I have for those of you that I know in real life. When DH and I first started TTC, my intention was to not tell anyone except DH and maybe our parents before I passed 12 weeks, when the chance of miscarriage decreases drastically. I didn't really think I could handle the additional grief if I had a miscarriage of telling a ton of people there was no longer a reason to be happy for me. However, there's no real way to write this blog without posting pregnancy results.
Therefore, I request that, at whatever point I do conceive, you who know me in real life not talk about my pregnancy with anyone unless you know they also read this blog. I know that people will slip up and word will spread, but I want to limit that as much as I can until I'm ready to announce it to all and sundry. Don't worry, I'll let y'all know when it is common knowledge, and until then you can gossip with the people who you know read this and in the comments section.
Thank you all for your discretion about this.
Monday, August 08, 2011
Opportunities and Lack Thereof
On the other hand, I don't really feel like I'm missing an opportunity this month because I don't have any reason to believe at this point that trying in the traditional manner would be effective. I've gotten to the point of thinking there's a good chance we'll become biological parents, but that comes from putting my faith in medicine, not in chance. Our next appointment is this Thursday, and we'll be discussing the test results for me and DH and determining where to go next. Since IUI doesn't seem to be covered, though, it seems like the only real question is when we do our first IVF cycle. At least in the fall I'm more free than DH is, since he's the one going off and covering football games. I wonder how long before retrieval his part can be taken care of in case my retrieval is on a weekend.
I am finding that baby announcements aren't bothering me as much as they were for the longest time. I guess my heart has finally caught up to my mind in terms of knowing that we're making progress and thinking that we might actually be able to become parents.
Saturday, August 06, 2011
More Results
I really appreciated that my best friend offered to come down from Ellicott City and sit with me and to drive me home if I needed it afterwards since DH was supposed to be busy. DH's morning obligation finished up earlier than he had expected, so he ended up being able to make it as well. Neither of them was allowed to go back with me because of the radiation, which was not something we had been told ahead of time, but it still felt good knowing they were there.
When I dashed off the post about my bloodwork and pelvic ultrasound, I didn't have the numbers for the bloodwork in front of me. Since someone was asking, here they are. The number on the left is my results and the number on the right in parentheses is the normal range.
Estrogen: 48 (less than 50)
Follicle Stimulating Hormone: 5.67 (less than 8)
Lutenizing Hormone: 1.78 (less than 13.4)
Prolactin: 7.61 (less than 25)
Thyroid Stimulating Hormone: 2.86 (less than 4.5)
Friday, August 05, 2011
Again? Seriously?!?
I was driving through Missouri with a friend, on our way to a staff development conference for APO. I was in the left lane going West on I-70, about an hour East of our destination of Independence, when the car in front of me swerved into the right lane, revealing a tire tread in the road. I swerved into the right lane and back into the left after the tread, but in the process, I lost control of the car and fishtailed. There was an embankment to the right sloping down to a frontage road and continuing down on the other side of it. There was no guardrail between the road and the embankment, and the car went over the side and flipped upside down. The car flipped right-side up again and went across the frontage road, coming to a stop pointing down the hill on the other side.
We were taken on backboards to the nearest hospital, with me texting people on the way since the police officer had found my phone. I knew, beyond a shadow of a doubt, that as soon as I could reach a Brother that was in Independence, we would be taken care of. They did a CT scan on me and let me off the backboard when it came back clear. My ankle hurt, so they did an x-ray and deemed it sprained when they didn't see a break. As sprains go, it's not that bad...I've been walking some of the time without the air cast they gave me. I had itty bitty glass shards in different places, and the doctor told me they would work their way out over time. The biggest issue there was that I had several shards in the bottom of my feet! My back wasn't hurting badly at the time, but it definitely has been hurting since. I have been very glad for the meds he gave me!! I've been trying to not take the PRN pain medication during the day because it makes me sleepy, but I took one at lunch today and another at dinner.
I was right about my Brothers taking care of me/us. In an amusing twist, the one who picked me up from the hospital that night (and even held off on the smart-assed comments!) was our Program Director for Risk Management. One Brother made arrangements for DH to get from the airport to the hotel (he flew in because of work), and 2 others gave me clothes to wear for the night and the next day. A Region Director took us to empty my car, get my prescriptions filled, and get my friend from the hospital. While we were waiting for the meds, he suggested going to the craft section of the Wal-Mart and getting an X-acto knife so the surgeon present at the conference could remove my glass shards! That was the first thing to make me really laugh at the situation.
We ended up finding a cheap flight home for me, and now I get to deal with the pain while I wait for State Farm to determine how much they will give me for my car so I can replace it. Yes, the car I got just 3 months ago. I had put my stickers on it (including one that had been VERY hard to find) just the night that we left for Missouri...almost feels like I jinxed it. I do want to try to get another Elantra, since I was very impressed with how well it held its shape as it flipped. I felt my head hit the top of the car when we were upside down, but it wasn't very hard and didn't even seem to leave a bruise. The main casualties ended up being the car, my friend's glasses, and my engagement ring (the latter two flew from the car and could not be found in the long grass on the embankment).
Wednesday, July 27, 2011
Results
Tuesday, July 26, 2011
Progress
I also scheduled my HSG today; that'll be August 5. DH can't be there for it because of stuff that he has for work. I told him it should be ok since even though the paperwork says it's better if someone's there, it's so they can drive you home if you ache too much. I'm going to be going straight to work after the HSG, so that point is kinda moot. DH said very emphatically, though, to call him if I was too achy to go to work and needed him to take me home. He's so sweet. :-)
Saturday, July 23, 2011
Raising Awareness
The bigger (ok, to me) item related to raising awareness, though, was an email I got from RESOLVE yesterday and was finally able to read in depth today:
Dear Jessie,
Bloggers are so important to the infertility community. You share your stories and insights into a very personal journey. We have another way for you to raise awareness. RESOLVE has partnered with a major women’s magazine to develop an exciting project to raise public awareness about infertility. We need your help to make this a success.
Then it’s up to you. What message do you want to share? Tell us what you wish you’d known about fertility drugs… or about adoption...or about IVF...or about being a foster parent...etc. Tell people who haven’t dealt with infertility how you would like to be treated.
Videos should be short and sweet – one to three minutes. We are taking a grassroots approach to this, so don’t worry about fancy production. Uploading your video will also be easy. Videos will need to be submitted by September 1.
If you would like to participate, here’s what we need from you now: send an e-mail to Andy at aschwarz@resolve.org with your name, age, state, and what topic you plan to talk about. You do not have to send a video right now.
Andy will follow up with you in the upcoming weeks with a few more details as well as those upload instructions. Thank you for considering lending your voice (and face!) to this exciting public awareness campaign!
I already told DH I'll be needing help with filming my video about the things I wish I had known about insurance coverage of infertility. Like when I participated in the Bust an Infertility Myth Blog Challenge and when I emailed and called my Senators about the Family Act of 2011, I feel good about being able to do something other than just my random posts to advocate for infertility awareness and consideration.
Wednesday, July 20, 2011
And Now the Post You've All Been Waiting For!
I was so NOT ready for the alarm to go off at 5:45 AM, but I had scheduled a 7:15 appointment when later ones were available in order to interfere with DH's workday as little as possible. After dealing with all of the new patient stuff, we met with Dr. McKeeby. He looked at our paperwork, and we pointed out the most pertinent parts.
We discussed the possibility of PCOS that had been raised by my OB, and he said that PCOS does not appear to be the problem. I could still have polycystic ovaries, since PCOS is a symptom of insulin resistance rather than the other way around, but the 18 months of basal body temp charts with LH surges marked indicate that I am ovulating the way I should be. Plus, I don't have any of the other symptoms of PCOS. I'm going to continue to take the Metformin that my PCP had given me, but he prescribed it to help prevent/delay the metabolic syndrome that I don't have yet but am at risk for, rather than for infertility.
OK, so if it's not PCOS, what is it? Dr. McKeeby said that DH's previous results look close enough to normal to not be a concern, although he is of course going to have to repeat the testing. We both have to have bloodwork (a repeat for me) to make sure we don't have HIV, Hepatitis B or C or syphilis (insert Grey's Anatomy Season 1 joke here). The more key things, however, will be the tests I'll have done in the next couple of weeks. Day 3 bloodwork (testing FSH, TSH, estrogen, and prolactin levels) and another pelvic ultrasound, and several days later a hysterosalpinogram (HSG). For those who don't know infertility terminology, that involves putting dye into my anatomy to look for problems, especially with the fallopian tubes. From what I hear, I will be very definitely taking a couple of Aleve ahead of time, because it hurts. Not like a sprain or break hurts or anything, but enough for me to want the meds. DH wants to be there with me for it, which I thought was really sweet. Fortunately for us both, we can get it done at a non-Shady Grove facility in Annapolis rather than going all the way to the main SG office in Rockville. One thing that I love so far about SG is that they will call me later that day (or Monday if it's on a weekend) with results of bloodwork and other tests...almost no waiting!
Based on all this, we'll be looking at either Intra-Uterine Insemination (IUI) or IVF. IUI is less invasive in a lot of ways and involves few if any needles going into me. It does have an increased risk of twins, but not much risk of higher-order multiples, and we wouldn't mind twins. IVF has for people like us about triple the success rate of IUI and more control over how many babies are likely, but it involves a lot more needles and hormones and anesthesia.
Our nurse, Crystal, then came in. Yes, we get one designated nurse to work with through all of this rather than just dealing with whoever's available at any given time. So far, I am loving the service! She went over the testing with us, as well as how to get it done. Once I hit Day 1, I'll call her and she'll schedule me for my testing. She also told me to go ahead and start taking prenatal vitamins again (if you remember, I stopped taking them months back when I lost hope completely). That felt kinda weird tonight, digging the bottle back out from the bottom of the bin where we keep medications and first aid stuff.
Crystal then took us to Darlene, who handles the finances. She had talked to my insurance company when we were with Dr. McKeeby and Crystal, and she found out that my insurance apparently doesn't cover IUI. I had thought that all of the mainline IF treatments were covered, but looking back at my emails when I got to work, I saw that the insurance broker had said the policy didn't mention IUI one way or the other and that she would need to look up the procedure codes. I called Darlene and got the codes from her, and the insurance broker will get back to me by the end of the week on whether they're covered.
DH and I talked about the possibility of IUI not being covered on the way to the cars. My main feeling was that I would hate to have to go with a more intense and invasive procedure just because of money and insurance coverage. DH pointed out the higher success rate of IVF and noted that it might not be that bad. So we'll see. I'm sure there will be many conversations about this.
Next stop on the Magical Bodily Tour, the vampires of the opera (or at least of the doctor's office).
T Minus About 6 Hours
Monday, July 18, 2011
Weekend Update with Jessie B
Friday night I got to have dinner with DH and a friend we hadn't seen in several years. Later that night, DH and I got used as a jungle gym by our friends' 4- and 7-year-old. We've started seeing these friends (who live 10 hours away from us) often enough that the kids remember us from visit to visit, and they are so sweet and snuggly!
At the wedding reception, we were seated with a couple from APO that we didn't know before. The wife and I got to talking, and we found out that we have IF in common; we sat there for a while trading info. This morning, we sat with them at the post-wedding brunch, which turned out to be a very good thing for me. The seat next to me was empty for DH, who was a little late, and while I was in the buffet line, a woman sat there with her baby to talk to the non-APO people at the table. When I came back to the table, I waited for a break in the conversation and mentioned to the woman that I had been saving the seat for DH. She said that was fine, that she'd move when DH got there (although she was really slow to move when DH did arrive). The woman next to her then said, "Wouldn't you rather take the baby home than the husband?" I just kinda looked at her; I had no idea what to say or how to respond. Ideally I would have had some sort of witty comeback, one that didn't even touch on infertility (since I assume the person didn't mean any harm), but I just couldn't come up with anything. There was an awkward silence and then they resumed their conversation. Even before my new friend leaned over to remind me that some people with babies can be really rude, it just really helped me to know that the person sitting next to me got it and understood my reactions, both the reaction that showed and the reaction that didn't show. I told DH about it when he sat down (in a whisper, since the people were still there), and he was sweet and supportive, but it still helped to have someone understand me in addition to having someone support and care for me.
Just over 2 days till my appointment!
Monday, July 11, 2011
8 1/2 More Days
I can get through until then. I can deal with the high toddler content here. I can do it. I can. I promise.
Sunday, July 10, 2011
The Waiting Game
I was amazed from the beginning that I only had a one-month wait for my appointment at Shady Grove. It still could have been a hard wait, but I've been lucky to have a really full month in the meantime. First Membership Academy for APO, then running a quizbowl tournament for JROTC teams, then the 4th of July weekend. Now I'm spending the last full week before the appointment at the beach with my family. On the one hand, there are toddlers everywhere, with something like 7 kids below school age, and one cousin that's here is due in August, but it makes it easier to deal with it because I have the appointment coming up. On the other hand, it could be really hard to wait with the anticipation of the last week, but it makes it easier to deal with it because I have fun things to do with my family this week.
Thursday, July 07, 2011
2011 Hope Awards
Also, when I read the finalists for Best Blog, I came across a great post from Whitney & Erick. What Whitney wrote about the statements of "just relax" really resonated with me. The rest of this post is copied from her (and thus contains some medical details that I hope don't apply to me).
The truth
First and foremost, infertility is a disease that affects 1 in 8 couples of reproductive age. The definition of a disease is “disordered or incorrectly functioning organ, part, structure, or system of the body.” Infertility is due to some malfunction in the body, whether it be hormonal or structural. Ergo, a disease. Even for people with unexplained infertility, clearly something is wrong, but the reproductive system is complicated and sometimes it’s hard to diagnose. In my case, I do have several diagnosed problems including a uterine abnormality, luteal phase defect, Factor V Leiden, and autoimmune issues.
Without medical help, there is nothing I can do to have a baby. And, possibly not even with medical help. Nothing short of a miracle from God, that is. And, while I pray for that all the time, I can’t count on it. If you apply this “relax” thinking to the rest of your life, imagine this. Sitting around and waiting for a great job to land in your lap. Waiting to magically learn something new without studying. That doesn’t work – just like everything else, you have to work for it. And, just because some people didn’t have to work hard to have a baby, doesn’t mean I don’t have to. A little Marvin Gaye and a bottle of wine might work for some, but for me the recipe involves follitropin alfa injections, human chorionic gonadotrophins, anti-coagulants, steroids and lots of poking and prodding.
When people tell me to “just relax,” it’s insulting. Even though most people have good intentions when they say it, it hurts. It somehow insinuates that I have done something wrong. It makes it my fault. I know it’s not true, but it still hurts. It’s an accusation that somehow because of my inability to “relax,” I cannot have a baby. If only that were true, and that easy, I would have a 4-year-old by now.
Besides, I don’t feel “stressed” about my situation all the time. Usually just at key decision points. Everyone does and would. This has become part of my life, and I have learned to live with it. Usually, it’s a quiet sadness, not a throbbing stress. I talk about it all the time, but that’s because it’s cathartic to do so. To imply that I should be able to make life-altering decisions without a little stress is absurd. I’m pretty sure that lots of regular women who get pregnant all the time are stressing about their job, their kids, their relationships or something. Stress is not the problem.
Those of us struggling to conceive have been through hell. We’ve put our lives on hold. We have put our bodies through the ringer. Our relationships have suffered. We’ve had to deal with loss. We’re emotionally spent. We deal with failure on an almost permanent basis. We’re tired, frustrated and beaten down. Relax is not something we want to hear and it’s not the answer to our problems.
What people say [and my response]
- Maybe if you just stop trying/relax/forget about it/etc. “My cousin’s friend’s sister-in-law tried for a long time and then they gave up and what-do-you-know, they got pregnant. You never know…” [ Well, I pretty much gave up a while ago, but I'm still not a mommy. Also, all of those months in between the IVFs, I haven't "been trying." And, not all infertility is equal. Unless you know the nitty gritty details of your friend thrice-removed and my reproductive history, how can you compare? Your friend trying for 6 months and going on Clomid and giving up and then getting pregnant does not even remotely resemble anything to do with me or my situation. For the record, in this scenario, that would not even constitute an infertility diagnosis at all. Usually the threshold is one year of trying.]
- You need to stop thinking of all of this. [There have been times when we have taken a break from this battle. That didn't work. And, like or not, infertility has become part of me. It doesn't define me, but it's always there lurking in the background.]
- Take a vacation. [I've taken many during the five plus years we've been trying to conceive. Really gotten away from it all. Gone half way around the world. Sailed in the Mediterranean. Slept in the rainforest. Hiked a volcano. And, I didn't think about infertility at all. Nope, that didn't work. But, man, if it did, that would be awesome. Pregnant and lots of travel. Perfect!]
- You should meditate. [That might be a good thing to do, but it's not going to get me a baby.]
- Mind over matter. [Well, I have visualized a happy outcome, but it just hasn't worked. Besides if I could just conjure up anything I wanted, I would not only have a baby, I would also live in a custom house on the beach, travel the world, have great muscle tone and speak five languages.]
- You need to think positive. [It used to be easier to be more positive. Along with that positivity, I was also naive and blissfully ignorant. It's not that I'm not positive, but I'm a realist. I always hope for the best, but am prepared for the worst.]
- You need to stop being so stressed. [If you are experiencing stress and then feel pressure to not be stressed, the stress just multiplies. And, for me, there have been times that I have been stressed and times I have not. Not being stressed did not give us a healthy pregnancy. Also, when undergoing IVF, since all of the hormones are administered, stress does not play a part. See this study.]