Posts Tagged ‘lupus anticoagulant’

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My hematologist, etc

September 10, 2009

I saw the hematologist today and it took him over an hour to see me for what was a two minute consultation. He said I’m fine. Some stuff that was positive before is now negative though he doesn’t know why the change and he said that my miscarriages are not because my clotting issues. He said lovenox is pointless for me. I don’t know if I’m reading too much into this but these are the three areas that still showed up as issues, and his don’t worry about it mantra just isn’t sitting well with me:

MTHFR: This is a gene associated with higher risk of nueral tube defects and miscarriages. I have one mutation (C677t). Dr. F said since its only one mutation not two he’s not concerned. But- there are doctors who recommend lovenox and increasing folic acid and B6 and B12 for one mutation. Plus, Jack could have a MTHFR mutation, which when combined could give me two. He said there are no known ways to treat MTHFR. But, there are! Maybe the effectiveness is in question but there is a protocol.

Factor VIII Activity: Normal is 50-150. I’m 164. He said its okay since this clotting factor rises in pregnancy, except the lab results he gave me say these numbers may be elevated in late pregnancy. I’m hopefully six weeks today so how is this elevated due to pregnancy?

Plasminogen Activity: Normal is 78-130. I’m at 150. He said this nixes the Factor VIII so no worries.

I’m going to talk to my OBGYN about this but Dr. F said he’d tell my doctor I don’t need Lovenox. I strongly disagree and hope she maintains her stance. The veins and arteries the uterus are often microscopic and so clots that would be inconsequential to me would be huge to a growing fetus and if this can save this pregnancy I am taking it.

(The random aside):You might have noticed in my many blog posts about my friends- it seems I’m not having the best of luck. We were having a small dinner at our house on Saturday and four people are bailing TODAY out of eight people. We thought about who we could invite now and could think of no one. While I believe that quality matters in friends, not just quantity it makes me sad that I have no one else I want to invite. I could definitely be part of the community if I wanted but all the girls I know talk about are things I don’t care about and, this is just me, but I don’t feel they are genuine and what’s the point of being friends with people who aren’t sincere. I am sure I have a ton of flaws that people could point out, but one thing I am is a genuine and sincere person. I don’t fake it, and if I care about you and you hurt me I can’t get over it. I’m not sure if its hormones making me weepy, but I just feel sad. I quit facebook because I got tired of the constant birthing announcements and updates on every little thing junior did, but quitting facebook is akin to social suicide these days. I’d like to think a good friendship will survive deactivating facebook but it turns out I have few such friends. Add to that not attending baby showers for about a year- yeah. IF killed my friendships it seems. And today, this makes me sad.

(The self check): After that huge pity party I threw for myself (thank you for attending) I need to get a grip. Susan at sprogblogger does a daily days of grace list on her blog and I think I need to do a similar thing just to help myself get out of my funk, so here goes:

1. Having dinner with Jack at my favorite steakhouse to celebrate my “retirement” from work today.
2. I no longer have to work at my toxic work environment.
3. I can sleep in tomorrow and not feel a lick of guilt.
4. Today, I am six weeks along and as of now, to the best of my knowledge, I am still the P word.

Okay, that helped. Thanks for listening.

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Lovenox *gulp*

August 28, 2009

After my first loss I asked my doctor to run any tests she had to find out why. She was kind of enough to oblige though I’ve heard some docs won’t run these until three or more. While waiting for these results I got pregnant again. She called me 5 weeks into my pregnancy and asked me to take a baby aspirin because I tested positive for lupus anticoagulent and referred me to a maternal fetal specialist to discuss lovenox. He ordered a series of 15 tests on me.  In the meantime I lost that pregnancy. A few days after the loss I learned my lupus anticoagulent was now negative though there were other numbers that were borderline high. She said next time I got pregnant to get lovenox immediately upon a positive test. True to her word as soon as I called in she wrote me a prescription for lovenox.

I waited to fill my appointment until the next day because I had an appointment with a hematologist. He said he didn’t think lovenox was medically necessary for me and that I should wait two weeks for him to run some more tests on me. I asked him why did I test positive for lupus first go around, and then negative the next go around. He said sometimes lupus anticoagulent follows one pregnancy but not another. I asked him if now I was safe in this pregnancy, he said I can’t be certain. So while he said I didn’t need to take lovenox he did say that if my OB  felt I should, I can go ahead and take it. I began leaning towards taking it since the thought of this lupus thing coming and going like an apparition trying to steal my pregnancies freaked me out. But I still hesitated. Dr. F said not necessary and he’s an expert on all things blood. Jack thought I should wait out the two weeks.

After fretting for sometime someone advised me the obvious: ask you OBGYN. The hematolist may be a blood doc but he works with cancer, this is a recurrent pregnancy loss issue, you should trust the people who work with the preggo people. So I e-mailed my OB-GYN last night and she said she wanted me on it on the advice of the maternal fetal specialist.

I’m freaking out now. I am hoping by listing my fears they’ll seem less scary:

1) Lovenox costs $1,000/month. My insurance covered it this go aroud but I’m switching insurance in October because my job ends. What if the new insurance gives me problems?
2) I got a positive pregnancy test TUESDAY at 13dpo. Now its FRIDAY 16dpo. I didn’t start too late did I? I’m so upset that I waited. I should’ve gone with my instinct and just started stabbing myself with the needles as soon as they were ordered. The hematologist just confused me. UGH. It’s always better safe than sorry.

Nope, still scared. Please don’t let it be too late. Please don’t let it be too late.

Anyone have any advice on how to take Lovenox?

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It lies under the surface

August 26, 2009

4am today Jack shook me awake. You were yelling Why?! over and over again, he said with a bewildered expression.  I have no recollection but Jack told me I’ve been having outbursts like this the past few weeks.

I thought I’ve been dealing with my second loss better. I don’t cry daily. I don’t sit and fixate on what happened. I felt relieved that somehow I’d manage to hurt less this go around. Today as I made an appointment I turned a page in my agenda and bug’s u/s picture drifted out and landed in my lap. It’s been a month since I lost bug.  Her presence in my womb while my numbers tanked shocked my doctors, but there it was, a fact I will never forget: My bug was a fighter. She wanted so badly to survive. For the time she lived, she beat the odds.

I keep telling myself not to mourn this loss. Missing bug makes me feel I’m missing a mirage. But apparently subconsciously I am missing bug like crazy. I’ve wondered for some time why I showed my mom the u/s pics when she visited me after my loss. She saw it and burst into tears and kissed the picture holding it close to her chest. I felt a weird sense of relief. Now I think I know why. I think its because I wanted someone else to care. If someone else cared, bug was real, bug mattered.

Today at my hematology appointment the doctor said how far along were you when you lost your two children, I’m sorry, I meant, your babies? I felt like someone jolted me. It took all I had to not to bite my lip from crying, not of sadness necessarily but relief. He got it. He didn’t try to negate my pain with neutral words such as “losses or incidents”. He called them my babies. No one IRL ever called them that before.

Long story short, the hematologist ordered THIRTY different labs on me. He said the current results don’t indicate there is a medical need for lovenox so wanted further testing. The results come back in two weeks. As I was leaving the med tech who drew my blood approached me. Listen, he said, I read your chart. What’s happened to you is horrible. I really hope that whatever is wrong we here will find out and fix it for you.

I’ve been so busy trying to move forward I haven’t really looked back. Yes I’m jolted by grief from time to time but I try not to look at it too deeply. I run, or put on music, or turn on the TV. I’ve learned something today: you can run from the past but it catches up to you, releasing from you like the steam from a volcano. What you hold in will either come out or destroy you from the inside. I’m grateful for being the P word again, and despite the past I remain hopeful and grateful for the opportunity to try again. Still, I will never forget who I lost, and today on this one month anniversary I’m allowing myself a moment to grieve my little fighter.

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Co-existing with infertility

August 16, 2009

Sitting in the doctor’s office after my last miscarriage, Jack on one side of me, the doctor on the other, I felt as if I was part of an intervention. Don’t be so hard on yourself, Jack said shaking his head and patting my hand. Dr. D nodded, In your life when you put your mind to something you’ve accomplished it, but in this matter there’s a lot that’s out of our control. She’s right. Since I was a child, the lessons imparted to me by my parents, teachers, society, was If you work hard enough you can achieve your dreams. And this was true, until now.

In the realm of infertility and pregnancy loss, I can take my Metformin to keep my insulin in check. I can pop the baby aspirin to thin my blood so it won’t strangle a future fetus. I can take the prenatals and make sure I’m eating a balanced baby friendly diet. I can try Clomid. IUI. IVF. I can jump on to lovenox after a positive pregnancy test. I can work as hard as I can and while I should keep my feet moving I have no control over whether any of this will work. This is hard to accept. Perhaps this is why I start sign hunting by checking my boobs, debating the degree of nausea and exhaustion during each two week wait. But sign hunting won’t give me the end result, its just a maddening way to waste two weeks (and in my case often longer) of your life.

Things such as sign hunting and the devastation that follows when you see blood made me think of stepping out of the baby making game for a while until I had my head in the right place emotionally. I told my therapist this thinking he’d agree because if anyone knows how much of a wreck IF has made me, it should be him. I was surprised when he disagreed. You’re in the game and I think you should keep moving, you need to learn to handle the challenges better but I don’t think you will take a time out. I think its an intellectual exercise to debate whether you should or not, you’re too deep in to step back. I think he’s right. I could never stop. The challenge for me is not taking some time off, but learning how to co-exist with my infertility. To walk side by side with this challenge and not let it wear me and turn me into a one dimensional person.

In an effort to co-exist with my IF I decided to focus on things in my control, so I can keep on moving on in this journey but not be paralyzed emotionally while I do so.

No more Sign Hunting. What do I get out of checking my boobs and gauging my levels of exhaustion? If I’m pregnant I am and I’ll find out soon enough. Some people say its good to have your hopes up and be positive. Maybe this works for some, but for me getting my hopes up means they are crushed in a bloody heap at the end of the cycle. Most people get that a miscarriage is sad, but most non-IFers don’t get that the end of a cycle that did not work is heartwrenching too. It is also a loss. I’m not sure how I’m going to succeed here but I’m not googling for signs and symptoms anymore and the goal is to firmly tell myself not to read into things when the urge strikes. If that means chanting a mantra you’re not pregnant, stop it! or Google is not a fortune teller. So be it.

Focus on the things I have control over like . . .

My fitness and nutrition. Exercising burns adrenaline and calms me but when I’m stressed or depressed the last thing I want to do is go for a run. My neighborhood is full of rolling hills and my plan is to stick on the iPod and power walk. I’m also considering yoga. With PCOS losing weight is challenging but its possible. Its time I took greater control.

My hobbies. I love to read. Scrapbook. Try new recipes. Write poetry (of questionable merit).  Instead of imploring Dr. Google to predict my future status of motherhood I will do things I enjoy.

My writing. Though my writing is technically a hobby at the moment since I’m not paid to do it, I have a finished manuscript that I’m revising one last time before submitting to agents. Since the miscarriage issues I’ve neglected it entirely. I need to update my query letters, and pursue this dream.

Reflecting. A dear friend reminded me how important it is  to take advantage of silence and down time to contemplate and reflect. When she first suggested this I wondered what I needed to reflect on or contemplate, but after a few days of plugging out for a few hours from TV, music, cell phone and internet and just taking a walk, or making dinner in silence I saw what she meant. The world comes into sharper focus. I realized its hard to really think clearly when you’re always plugged in. This act of taking time out for silence each day is helping me in ways I could never have anticipated from the simplest areas of appreciating things I never thought to appreciate such as the brilliant orange of a carrot I’m cutting for dinner, the sound of its crispness as I slice through it, the sweet flavor of homegrown tomatoes. Being plugged in, you can end up just doing things by rote and not realizing.  It’s not always easy to co-exist with silence because sometimes thoughts that are unpleasant that I’ve tried running from also make themselves known, but now at least I can begin tackling these thoughts instead of pushing them away, because the truth is, even if we don’t think about things and reflect, they are still there, poking us under the surface, stealing our peace of mind.

My Marriage. Its easy to take Jack for granted. He’s my best friend and he’s always there for me. While I’ve gotten better about dumping all my IF issues on him, I still can’t forget when he said he wanted his wife back. I hope as I try to flesh out the other parts of me that go beyond my desire for motherhood, Jack will see his wife returning. I cannot control all aspects of my marriage but I can control my end of things.

I hope by focusing on the areas of my life I have some measure of control over, I can take away the tunnel vision on IF that has taken over my life. I accept that no matter how much control I take over my life, IF sucks and failed cycles will always hurt, I just hope that I will bounce back faster and not allow IF to take over all of my life. The best I am praying for is it to co-exist with my infertility and not let it wear me as it has for two years.

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The weirdest angst ridden post yet

August 10, 2009

In my previous post I said I planned not to wait for the next cycle before TTC since after miscarriage #1 the time frame until my first cycle was my most normal ovulation cycle ever and I regret not having taken advantage of that. It appears, I may have ovulated. It’s hard to know if its legit since it should only be about CD6 so I’m basing it on EWCM. Maybe after miscarriage it can happen at any time for no reason as the body readjusts to normal. I know its normal to be worried about a third miscarriage due to low progesterone levels, and the clotting disorder, and PCOS, but that’s not why I’m worried if it turns out I get pregnant this month or within the next three months.

I’m worried because there is a wedding on my husband’s side of the family in my city in November and my in-laws, all of them, will be staying with us to attend. I wrote a little about why I’m freaking out about this here, but to put it short, despite having PCOS and irregular periods whenever I saw my in-laws I’d get my period. Something about being around them (or some huge fucked up coincidence) causes me to bleed when they’re around. I had both of my miscarriages while around them. This past time I miscarried I hadn’t seen them since my last miscarriage when I was at their house (almost four months ago). My conundrum sounds silly but feels frightening. If they come in November I could be anywhere from 2 to ten weeks pregnant all within the danger zone and as tough as a third miscarriage will be anyways, to bleed when they come again will be awful beyond words. I mentioned this to Jack. He said he could fly me down to my parents for that weekend but then I’m afraid to be without Jack during the first trimester.

Now I’m seriously considering waiting to TTC until after November so I can be assured I won’t have to see them for a good long while before I conceive. But Speckie was to be born November 3. I’d really been hoping to be pregnant before his due date. This is a stinky place to be. Wanting a baby beyond belief. Wanting to TTC, but wondering if I should not based not on science but a coincidence that has haunted me for years with my in-laws.  It all feels so confusing to me as there is fear in waiting since who knows if I’d get pregnant anyways in these next few months, and fear in trying because if I do I don’t know how I can deal with his family. I mean, its a wedding, they’re coming, I can’t stop them from landing on my front porch. sigh.

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To TTC or not TTC, that is the question

August 8, 2009

The first time we tried to conceive I remember walking around with the satisfaction of knowing we’d conceived. 1 + 2 = 3 after all, right? I’ve since learned, I can’t do math.  Each month we tried and each month found me in the cold morning hours sitting on the tub staring at the HPT begging for that second line, thinking if I could will it, it would appear. It never did, not for 13 months and then on month 14 there it was, the second red line so faint but there. I miscarried ofcourse and planned for another long infertility filled road ahead, and then about 8 weeks after my miscarriage I saw the line again, darker this time, silly me thought that meant this one would stick.

My miscarriage seems over though a beta on August 13 will decide on that definitively and I noticed yesterday the beginning of what appears to be a normal cycle. And I have a confession to make. I cringe  but this blog is the one place I can be honest, so I’m going to be honest: I want to try. Now. This cycle. Getting pregnant is so hard for me that the fact that I got pregnant twice makes me want to try the party trick a third time.

Maybe its the latent addict within me. Fucking hell if those positive pregnancy tests are not the most beautiful thing that technology has ever created. I keep all my positive tests and when pregnant they lay on my table and I walk by from time to time just to marvel at the most beautiful line that ever existed. Damn I want to see that line again. Damn I really don’t want to have to wait.

I’ve done my research and it seems that doctors typically want you to wait a cycle because then they can figure out when your due date is, but with me we always have to determine via ultrasound. It seems my issue is clotting which my doctor has already set up a protocol for next time I’m pregnant, and I’ve decided that I would not try to conceive after cycle day 20 because I’ve heard that egg quality worsens upon late ovulation. Considering each time I ovulated it was past CD24 the odds of me conceiving even if I were to TTC now are slim to none because like I said, I refuse to TTC anymore on late ovulations if that means an increased risk of miscarriage.

But- what if this time I ovulated a bit earlier? What if the EWCM is glorious? Right after miscarriage 1, two weeks after my HCG went to zero I had an ontime ovulation. It felt amazing to have a normal cycle and sometimes I really regret ignoring Jack’s urging to go ahead and try. Maybe we’d have had a nice perky egg, maybe it would have made all the difference.  I don’t know. I could never be sure.

So that’s where I am right now, playing tug of war with my heart and mind. I wish there was an easy answer, a simple solution. Perhaps my PCOS and its nonovulating nature will take care of the answer for me but for now I remain the idiotic optimistic deigning to think I may ovulate and deigning to think I have any say on matters of my own conception.

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Clomid. Progesterone. Bloodwork. Oh My!

August 5, 2009

My doctor called today with the results of the panel of tests my maternal fetal specialist ordered to investigate my lupus anticoagulant disorder. The results were funky. The lupus anticoagulant test came back normal which confused my doctor and me. Her theory is that either I’m borderline and the test got me on a good day, or the aspirin is helping fix that issue. Four tests came back bad and I wish I knew the names but they were so convoluted I got confused, however those four clotting disorders that were present increase the risk of miscarriage. My next step is to see a hematologist and go over the results with them and see if they recommend anything above and beyond lovenox or heparin and if this will affect me beyond just getting and staying pregnant. She can’t refer me to a hematologist since I’m no longer pregnant so now I get to go through some insurance fun to figure out my recommendation. Fun times!

As much as I know I should avoid Dr. Google, he’s just always there for me. I’ve been doing some research on the link between PCOS and low progesterone and the results seem to be mixed. Some say that PCOS causes low progesterone which can cause miscarriages. Some say this theory is rubbish. My progesterone levels at 5 weeks pregnant were 9.5 which my doctor said was low. However, the question is: Did the low progesterone cause the miscarriage, or was the pregnancy doomed hence the progesterone low? The reason I’m researching is because I’m considering taking Clomid next cycle. Until now I’ve gotten pregnant twice on Metformin alone but my ovulations happened on crazy cycle days like CD29 and CD40. To be effective progesterone supplements must be taken immediately upon ovulation. Clomid would help us predict ovulation and thus when to take progesterone supplements. So my goal with Clomid is to be able to time my progesterone supplements.

In my OB’s opinion she didn’t think progesterone supplements did anything but it never hurts to take them so she fully supports a Clomid/progesterone cycle if it will ease my worries. She encouraged me to talk to the RE in September to get a more informed opinion.

I’m already taking more pills than an 84 year old grandmother so the thought of adding more pills if I don’t have to is causing me confusion. There are side effects to clomid I’ve read such as decreased EWCM and occasional implantation issues, so if I dont have to take it then I don’t want to [though my ovulation is so unpredictable there is a huge thought of comfort that with Clomid at least I’d most likely ovulate]. I’m just so confused about whether or not progesterone does in fact save pregnancies, or if my issue is just the clotting issue which lovenox could resolve.

Have you used Clomid? Or had low progesterone but successful pregnancies via Lovenox? Any thoughts or advice on any of this that you might have would be much appreciated.

**And by the way- My boobs are aching. I feel ready to sleep at 9pm and have to drag myself out at 8am. I have waves of nausea! Is this normal post-miscarriage? I thought all this stuff should be going away, not to mention I didn’t have them when I was actually pregnant!

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Solving puzzles and fighting bitterness

August 3, 2009

A friend likened my struggle to solving a puzzle. First there was the puzzle pieces of actually conceiving which appear to have fallen in place (knock on wood, throw salt over shoulder, any and all superstitions go here). Then we ran into the next obstacle of actually, you know, keeping the child ticking in my womb. We might know the answer to this puzzle and be able to kiss our third baby. [Which, by the way, for others who have miscarried multiple times, does it ever get less surreal when doctors ask you “how many pregnancies have you had?” to answer them with multiples when you have nothing to show for it? It blows my mind to tell them two, surreal]

I’ve decided I can’t wait to solve the puzzle. I’m still bleeding from my miscarriage so I won’t get my period until the end of August so September we try again.  I’m nervous because my job ends in September, the month we plan to try and I don’t know what that means as far as insurance, but as long as insurance stuff can be worked out and I can keep my doctor it will be September. I’m so nervous about losing my doctor and having to start this all over again with someone else. Hopefully it will all work out.

In the meantime I’m fighting bitterness which is threatning to close around me like a hollow shell. We went out to Target and as I passed the baby section filled with prams and baby seats I felt a tangible bitterness like biting into a mango peel. I had to literally look away. I saw my mother smile at a small white frock and run her hand over the lacy material and felt my insides turn. Every baby I see sends a hollow echo through my womb. The news of baby genders from people who conceived when I did the first go around are pouring in and they are frankly suffocating me with grief. Not bitterness towards what they have, just bitterness about what I do not. My therapist raises his eyebrows when I say I shouldn’t have miscarried. He says life has its own ways of working, we can’t say what should or should not happen. Should rings of entitlement which leads to hurt and bitterness when one does not get what they think is their right. But fucking hell, I do feel I’m entitled to carry the child I conceive to full term. I think that is my right. If I miscarry I think its a fucking crime and I think it shouldn’t have happened and if I could arrest someone and prosecute to the full extent of the law I sure as fucking hell would.  Still, though my feelings are understandable I need to fight this bitterness.  Bitterness is like the vines that wrap around abandoned buildings blocking the windows from light, cracking the walls, hiding all beauty. If I stand still and allow the seeds of bitterness to take root they will take over leaving me a shell of who I am. I don’t want this and I’m determined to fight the feeling that threatens to take me hostage.  How do you fight bitterness? How do you keep yourself filled with hope and joy despite the seeds of bitterness that fall every day against your doorstep?

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My doctor and the plan

July 30, 2009

I’m still recovering from having passed out as I did. I’ve passed out before but never like this. Jack acts like he’s seen a ghost. I’m worried about some chest pains I’m having, I wish I knew when its serious enough to seek immediate help. I have a mild heart condition (Mild mitrovalve prolapse and Type I AV Nodal Block) so I’ll certainly call my cardiologist tomorrow, I just hope its nerves getting to me and nothing more.

I went to see my OB-GYN today, and we talked about coming up with a plan. I told her that next go around I want progesterone as soon as I ovulate but I never know when I ovulate. She read my mind and offered the following two plans:

a) TTC naturally again and as soon as I get pregnant start lovenox and progesterone.

b) When I’m ready, as soon as I get my period I will go in for her to check my ovaries, and then start me on estrogen meds,  and then Clomid and then progesterone. This will ensure that I will have the progesterone from the get go and will be able to get a positive pregnancy test in a reasonable TWW so I can start the lovenox ASAP.

We’re still waiting for a more complex battery of tests that should come back in a week or two which may mean I will need more meds or more evaluation. Right now I’m leaning towards plan B. Jack wants to start TTC in October. I kind of want to start in September, but maybe two months off is not a bad idea. We still plan to see the RE in September and see what he has to offer.

I am feeling very hopeful. A feeling that’s coming of its own accord without my prodding and reasoning my way into it. I grieve the loss of my miscarriages and the babies for whom I held such dreams and hopes. I will always miss them. Still, I am grateful to know why it possibly happened. Next time we will have more knowledge and perhaps this knowledge will result in a baby I can hold in my arms and cherish. Perhaps. It is this word within which all hope and prayers hinge on.

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Fears of insomnia, etc. **Updated**

July 30, 2009

All my life I’ve been blessed with the ability to sleep as soon as my head hit the pillow.  Lately I toss and turn each night and then relocate to the couch watching reruns and researching miscarriages, PCOS, lupus anticoagulant, anything and everything I can find. I havent slept before 3am in over a week and its catching up to me. It’s approaching midnight now and I know it will be another sleepless night. I hate the dark thoughts that whisper to me in bed, and I fear the uncertainty of not knowing what the morning will bring.

Today was a tough day physically. I’ve been having sharp contractions. I’m taking Lortab a painkiller and its having wonky side effects. I took it last miscarriage and felt fine, but this time I’m feeling nauseous, dizzy, tired and very drugged. I couldn’t drive to work, so I thought at least I’d clean up since my parents are coming into town tomorrow, but I couldn’t do anything except curl up in bed. I am afraid to take Lortab again, its a debate at the moment between the painful contractions as tissue is expelled through my body, or the feeling of being heavily drugged. I have an appointment with my OBGYN tomorrow afternoon. We spoke yesterday when she called in my pain killer prescription she said I’m afraid I won’t be able to tell you for sure what caused your miscarriage but next time you’ll get Lovenox from the get go. We’re still waiting for lab results for a comprehensive test the Maternal Fetal Specialist ran on my blood to determine what other disorders I have. I want to know if there’s testing that’s available to know if I have low progesterone levels, and what can I do if I do have low levels considering most experts say you must start supplements as soon as you ovulate and me with my PCOS never know when/if ovulation occured.

Emotionally I’m doing better. I’m trying to battle my dark thoughts. I’m telling myself that 30 is not too late, I still have time and shouldn’t lose hope (right??).  My parents are coming tomorrow. I’m afraid of crying too much around them. I just feel like I’ve disappointed them and seeing them reminds me of this. I know that’s not the case but just thinking about it makes my eyes well with tears. I wish I could kick this unhealthy guilt.

Finally, I’ve been humbled to read Michele‘s blog. She’s been commenting on my blog as I wade through my darkest days and only today did I realize how much more she herself is going through right now.  Every day I’m amazed at how strong you all are. You comfort me and give me support in the midst of your own fears and unique heartaches. I don’t think I can say it enough, thanks.

**Updated to Add**: Holy shit. I woke up this morning around 6:15 to take a shower and see my therapist at 7am before going to work. I woke up feeling a weird coat of sweat on me and kind of shivering, then suddenly I had an overwhelming desire to vomit but I couldn’t, but I wanted to, its the most terrible place to be. So I think to myself that a shower will help so I turn the shower on, and the next thing I know I’m lying on the floor and Jack is on the phone with 911 screaming wake up wake up honey wake up. Apparently I passed out in the bathroom but fell backwards hitting my head against the bathroom doors and landed with a thump on the floor. I don’t know how long I was out for but apparently long enough for Jack to rush over and see if I was okay and call 911. I still remember hearing his voice as I was coming to, not knowing where I was, what was happening.  I looked up the side effects of Lortab and one of the serious ones is nausea, dizziness, clamminess, and fainting. Clearly I won’t be taking any more of these painkillers but I wanted to post this for anyone considering taking Lortab, monitor yourself closely or ask for a different pill.

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Climbing

July 28, 2009

Cupcakes are a comfort in times of grief. Finishing off the last of our cupcakes, Jack turned to me and asked, do you want the ring on top of the cupcake? I smirked ofcourse! He raised his eyebrows and brought it to me, the little plastic ring with an Ice Age logo. I’m kidding I said. You know, he said looking at the ring, when we have kids and buy cupcakes, they’re going to wake up in the morning and see their parents ate them all. I responded, well maybe they won’t like cupcakes and just be happy with the trinkets on top. And there, I felt an imperceptible gasp as I dared consider our future children, and the cupcakes they may someday eat.

I feel lost at the moment but I have faith that one day I will find my way. I’m seeing an RE September 1. Days before my 30th birthday. Jack urges me to put away the past and look to the future. Take my thirtieth birthday as a fresh slate, to start a new decade with better understanding of my conditions and perhaps hope, hope against hope, that we will find a way to make sure it won’t happen again.

My journey in infertility and loss feels like a climb to the summit of Mount Everest. Every few steps a strong wind shoves me down, but each shove, each fall arms me with more knowledge of the patterns of the wind, the slipperiness of the slope. One day I will reach the summit. I might need to take a break as I learn more about my journey and there will be days I will doubt I have the strength to continue, but I see my little girl or boy at the top of the summit and I know I will continue climbing.

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Thoughts post-miscarriage #2

July 26, 2009

I’m sure anyone who battles infertility and anyone who has the loss of miscarriages under their belt never could have imagined how difficult having a child would be. I had an inkling due to my irregular periods that I would battle infertility. I never knew I would face the pain of miscarriage, twice. So far. What do I make of two miscarriages with two heartbeats? Is it a progesterone problem, since I was borderline two weeks ago. Is it my HCG doesn’t know how to double? Is it the lupus anticoagulant? Is it my cervix or uterus that find child carrying bothersome? I hope against all hope that an RE will know the answer. All I know is I’m sad, I’m angry, and I feel guilty as hell. I am aware the guilt is illogical but its real and throbs in my chest.

1. I feel guilty that babies with heartbeats that are supposed to have less than 2% chance of dying, die in my womb. I’m so sorry to have brought them into this world only to have left without a kiss or a hug.

2. I feel guilty that thanks to my fucked up body Jack isn’t a father. He told me last night, as though reading my mind, I want a baby with you, and if its not with you then with no one else. Still, the guilt eats away at my soul. God, he’d be a good father. He would rock her to sleep and teach her tennis. I wish I had it in my power to give him a child.

3. I feel guilty that thanks to my fucked up body my parents are not grandparents.  They want it bad and I can’t give it. God knows, I try. I do my best but I can’t seem to follow through. They are coming this weekend and I feel a strong lump in my throat. They should be coming to spoil a grandchild. Every interaction we have feels empty to me because there is not a child. My parents will not live forever. I’m so afraid they’ll never meet their grandchild.

Grief and guilt intermingle through my veins in equal parts. Jack wants to wait at least three months. He says we should make an appointment with an RE and figure stuff out and just spend some time not thinking about baby making. I don’t know what to make of it. On one hand I want to try again. Yes I got pregnant twice back to back but I don’t take it for granted. I spent 13 months trying in vain. I know how long the stretch can be. Each month we wait feels like time that I can’t get back, time wasted in the babymaking game. Then on the other hand it makes sense. I can workout and lose the ten pounds Ive been battling. I get three months of not TTC, or TWWing. God knows TWWs suck. Maybe it would do me good. I’m scared to risk three losses in a year. but you’re most fertile post-miscarriage. All these thoughts swirl as I face the future, grieve the past, and wonder the hell I’m going to do right now. Thanks to those who sent well wishes. I appreciate it. I warn you though, this blog won’t be a very fun place to be for some time.

I’m Charlie fucking Brown and I can’t seem to stop trying to kick that football. Can someone please shoot Lucy?

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My non-viable pregnancy, waiting to miscarry

July 22, 2009

I can’t sleep despite my best efforts so as I thought I’d share what happened. The doctor called around noon and from her voice I could tell things were bad. My HCG level, instead of doubling from 3500, dropped to 3000. She said this miscarriage is different from the last one. The last one was so close to the second trimester. We saw a heart beat and she’s convinced the lupus anticoagulant caused it. This one, due to how early its happening, she thinks is a more standard first trimester loss. One of those shit happens time of deal. She told me to still see the maternal fetal specialist tomorrow so that we can get a go ahead on lovenox the blood thinner. This way next pregnancy as soon as I see two pink lines I can start the shots right away. She called it pre-pregnancy planning except that technically I’m still pregnant. She told me I’m a high risk pregnancy person now. She wants to test my HCG levels Monday and asked me to give it two weeks to see if I’ll miscarry naturally. For such an early pregnancy she doesn’t want to put me through a D&C. It’s not easy to walk around knowing something is in you that no longer has a chance.

We ordered Chinese take out and watched two silly comedies in a row (Paul Blart Mall Cop, He’s Just Not That IntoYou) Those helped take my mind off of things but as soon as the television shut off and we went upstairs to sleep I can’t stop thinking about what happened. I can’t believe I’m going through this again. I thought it was a blessing from God, how I found peace of mind and began to just trust in the process. I found prayer and meditation and then out of the blue it happened. I was pregnant! Except it really didn’t. Two things swirl through my mind whispering in my ear: Its so hard for me to get pregnant. Now when I get pregnant, I’m high risk to lose the pregnancy.

I feel numb like someone dipped me in Novicain. My head is throbbing but inside I just feel empty. Except I’m not empty am I? There is an embryo within my womb falling apart pieces at a time. I cringe at the BFP HPT I wrapped and placed on the dinner table for our seventh anniversary. Jack’s face lighting up with joy makes me now sink further into darkness. My thoughts weave and meander through empty buildings and tiptoe over landmines. Will I ever get pregnant again? Will I ever be a mother? When can I try again? Am I ready to try again? Should I just give up? It is a sickening feeling to know that I now have to wait to miscarry. Wait to bleed. Try again. Two Week Wait again. Have any of you ever considered just giving up? The feeling consumes me at the moment.

My dad sent me an e-mail. It was actually a note I wrote to him 14 years ago when he lost his job and the small business he opened didn’t work and we were on the brink of losing our home. He time traveled me back to the past in an attempt to comfort with me with my own words:

Lately life seems hard and I know its very stressful for you. But please remember  never to feel guilty b/c you did what you thought was right. Always keep in mind that this stress is only temporary. We have dealt with worse and we all love you very much.No matter what may happen as long as you have us and we are all healthy and safe, there is no reason for stress. I love you so much, and it makes me sad that you have so much to deal with. But keep in mind all the good things in your life. I am proud of you, and I love you more than anything else. Every night pray to God, He loves you and you always try to help people.  I love you and I want your happiness.

Thank you so much to all of you who read and left me words of comfort. I read them and it felt like a hug from each and every single one of you. I don’t know what I would do if I did not have this small space in the blogosphere to let out my feelings and if I didn’t have your support who unfortunately know all too well my pain. With the way IF is such a hush hush ‘shameful’ topic I shudder to think how alone I would otherwise feel.

My dream for myself and each one of you reading is that one day our blogs will be gathering dust because we’re too busy playing with our coveted children. Until then, I’m here. Wringing my tears with the written word.

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The blood draw and the wait

July 20, 2009

I went this morning to have my blood drawn for my HCG levels. The lab tech gave me the usual gauze and tape over the withdrawal site, but when I got to work the guaze was soaked with blood! I guess the baby aspirin is thinning my blood. My boobs are aching today, and for a little bit I felt nauseous. Can these be side effects of the aspirin?

I’m at work. Jack thought I should call in sick since he’s worried, but being at work helps you feel like you’re doing something. I accomplished quite a bit which helped eat up 3 hours. I’m trying to figure out how to make it through the rest of the hours left. I mean, I have no choice in the matter. My cousin e-mailed that she’s calling tonight. Calls with her last an hour minimum so there’s an hour there. I have grocery shopping to do. Gotta cook dinner and clean up after. I might put my ipod on and go for a walk in my neighborhood. Harry Potter book 7 is sitting by my nightstand asking to be read again.

I hate that I’m wishing away the next 24+ hours. Life is precious and we’re not guarunteed a second of it, why waste it waiting for the next moment? Still, I’m allowing myself this time to be a little crazy. Today on the way to work I stopped at a stopsign and three little birds, all yellow breasted, so yellow you’d think God highlighted them, with dark black tails flew infront of my car, circled in harmony and then flew away. I’d never seen such birds before, my breath caught as I watched them fly away, continually in harmony, continually in motion. Inexplicably, I hoped it was a sign.

Waiting. It seems us IF sisters do a lot of that. You’d think we’d be experts at waiting. Somehow it does not get easier.

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Doctor Visit Update

July 16, 2009

Thanks to all of you who left me well wishes and urged me to climb down from the ledge I somehow perched myself upon. It’s true the diagnosis of PCOS, lupus anticoagulent disorder, low progesterone are good things so that this won’t happen again. I do get that, thanks for the reminder. The doctor visit went as expected though I had a mini-scare at the start of it. When pregnant when you walk into the exam room, they usually have a congrats brochure with information for new mothers. This time it wasn’t there. The nurse came in five minutes later and apologized that she forgot to put the brochure there. So yes, the test at the doctor’s office also confirmed my BFP. I’m being referred to a maternal fetal specialist to discuss whether I’ll get on lovenox or not. That should be early next week. Based on my uterus I’m only 4-5 weeks pregnant. I guess that makes sense since I had implantation bleeding about 3.5 weeks ago. She offered to do a beta test so I’ll find out tomorrow what my numbers are, and I’ll go in again on Monday for a follow-up beta. Tuesday is my first ultrasound to date this pregnancy. I really hope they find a heart beat.

It’s hard to get seen by my doctor but she rocks. Whenever I meet her I feel lucky she’s taking care of me because I trust her. I feel slightly better after the doctor’s visit. She told me I’d feel weird up until I passed the ten week mark when I lost the first pregnancy. I guess that’s natural. Regardless of how many nicknames I come up with, in the recesses of my mind the fear is going to lurk. My goal is to keep it in the recesses of my mind and not to allow it to  jump up and take center stage doing the river dance.

But just for the record, I’m pretty sure it’s a girl. 🙂

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Not Doing Great

July 16, 2009

Knowing that the auto-immune disorder is the reason I miscarried has thrown me off orbit. I am haunted with the knowledge that my baby was fine. My baby was breathing and growing and deveoping on schedule and then thanks to clotting issues my baby died. The grief overwhelms me. I can’t change anything that happened. What was is no longer here. I can’t cry and bring back my Speck, but it just hurts to know what a beautiful missed opportunity of life no longer is.  I realize I am currently pregnant but I cannot shake the fear that I will lose this one too. I don’t know why but this fear has gripped me and is threatening to do me in. I don’t want two miscarriages in a year. I don’t want to be told this one is not developing thanks to my body acting stupid.

I’ve made peace with my miscarriage. I thought. I gained a lot of understanding on who I was, what I was made of. I found my faith again after years of darkness, but. . . that doesn’t make the pain hurt less. Yes if I miscarry again I will get over it and I will learn to stand again but I’m not looking forward to the fall. I’m frightened to death of the fall.  I can’t fall. Please God, please God, don’t let me fall.

16 hours until my appointment, and counting. . .

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Meant to be . . .

July 15, 2009

Jack said something and immediately apologized explaining he didn’t mean it as it came out, but its stuck with me. We were talking on the phone and I said, So it hard for me to GET pregnant with PCOS and then when I do get pregnant by miracle of miracles my body has also seen fit to make it hard for me to keep my pregnancy thanks to this auto-immune disorder. Jack responded with Sometimes it feels like we are not supposed to be parents. If there are so many obstacles in our path maybe its just not meant to be. I didn’t get mad because he’s entitled to feel as he does and I said nothing. He called a few hours later and said he didn’t mean it that way. The fact that we want it and are doing everything we can means that we will appreciate it more once a healthy baby is in our arms. I believe him, I think he was frustrated for a moment, and we’re all entitled to a dark thought.

I don’t know. I mean as far as I know I’m still pregnant. Hopefully I will stay pregnant.  I guess if I had nausea or something else this would feel more real but I have no symptoms or signs so it keeps me distanced to some degree from this pregnancy. I have hope that I’ll stick it through pregnancy and have a healthy happy baby at the end of this but it’s just hard to hang on to that right now as I look at the odds stacked against me.

I was so good about not being impatient for tomorrow’ appointment and now that its less than 24 hours away, with this new diagnosis and the now increased risks of miscararriage, 2:30pm tomorrow may as well be two years away.

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The world feels like its tumbling: Why I miscarried

July 15, 2009

Like anyone else who miscarries I wanted to know why. After my miscarriage I asked the doctor to take some blood work to see if there’s any disorder predisposing me to miscarriage. I just got a call from my OB that one of my blood tests came back positive for lupus anticoagulent. Lupus. I know that this doesn’t mean I have lupus but I have this particular variation and this means that I have higher incidence of blood clotting. Women with lupus anticoaglant have higher risk of miscarriage. It is one of the common reasons for miscarriages to happen. The message from my doctor said to take a baby aspirin starting now and she’ll explain more at our appointment tomorrow.

First of all, she could not wait until tomorrow. She called to tell me to start ASAP.  This is urgent then. What if I’ve already lost my baby? What if it’s too late? I didn’t wake up last night to pee. I HAVE NO symptoms of pregnancy.

This means Speck was fine. He was healthy and okay and had no chromosomal abnormalities. **I** lost him. I mean, I know I didn’t do it on purpose but had he found life in someone else’s womb he would’ve been born and healthy and happy.  The blood clots seep into the placenta cutting off oxygen to the fetus. I read stories of other women like me with it, who had a heart beating little baby growing that died so close to the second trimester. And I might already be losing the new one growing within me. Meggomae once reminded me I’m already a mother. When I feel the pain I do at the thought of my baby suffocating due to lack of oxygen, the thought that he could have lived and died due to us not knowing. . . the pain is so raw that I do in that moment dare anyone to tell me I was not a mother.

I talked to my doctor just now and she told me this should be seen as a good thing since now we know. Lots of doctor don’t order these tests after one miscarriage, they say after two or three they’ll check. I’m grateful this wasn’t even an argument between me and my doctor and I’m grateful she tested me.  I told her I did not wake up to pee last night and I’m afraid I might have already miscarried. She said don’t think like that, and that its probably not too late.

Intellectually the odds are low I have already miscarried, but I had a 2% chance of miscarrying Speck when they found his strong heartbeat. Odds mean jackshit to me. She said she will feel my uterus to determine how far along I am and if I’m far along enough they’ll do an ultrasound. I’m also going to see a specialist to see what to do about my disorder. They might give me heparin, a self injection daily that thins the blood, but she wants a specialist to diagnose that. In the meantime I’m popping baby aspirins.

3 metformin tablets. 1 prenatal. 1 baby aspirin. 1 nightly dose of progesterone. I will hang upside down naked from a tree in my front yard if you can promise me I will have my baby healthy and happy in nine months. Keep the meds coming, just give me my baby.

FUCK. I really wish it wasn’t so fucking hard all the fucking time.