Testing the Waters

I'm back - at least a little bit back.  I don't know how to explain what happened, just that I needed a great big break.  No saving money, no blogging, and no reading blogs.  I just had to get away.  other than the occasional doctor's appointment, the only things infertility related that I have been doing is attending out local support group meetings.

I have a hard time admitting - even too myself, how hurt I was after our IVF attempt in April.  I just shut down.  I took a couple of months before I even really had a prayer of keeping up on housework.  I was broken.  I took on too much, and when it was finally all over, when I no longer had to hold myself together so that IU could just graduate, all the cracks started showing plain as day.  so - I've been mending them, one at a time,  and my heart has a crazed appearance like crackle finish paint, but it's mostly whole again.

This is a good thing, especially since we're on the roller coaster again.  I started the BCPs this week for our next try.  I start stims the first of November.

I am terrified.

Nothing that happened this summer has really done much to make me feel better about or failure.  The doctor has decided that I have diminished ovarian reserve to go along with Jakobe's bunk sperm, and my endometriosis.  I'm not sure I believe him because my labs don't seem to agree with him, but he could be right.  Maybe we just thought we had the shit end of the stick to begin with, but we're really starting to small what we got ourselves into now.  We'll see.  This time it's a micro-flare protocol, with Lupron and the highest dosage of stims we can, from the get go.  We'll see how it turns out.

The pool is closed for Maintenance

That's Jakobe and my code for AF, usually shortened to "maintenance". I'm not sure how to express what I'm feeling today.  It is with great fanfare that I wish to announce - today is CD1  - and I'm not sad, upset, disappointed, or any of the normal emotional baggage that goes along with this day in my usual routine...

I suppose that there is a small part of me that refuses to accept the obvious, some part of me that continues to hope, month after month, that we were wrong.  That continues to hope that this month - we'll get our surprise pregnancy.  But this month - my little hopeful voice has been completely drowned out by my BIG HOPEFUL VOICE.  

My Uterus on BCPs

The big voice is telling me that my period is a good thing, that it means that I'm one step closer to our IVF cycle.  It tells me that I get to start taking the birth control pill (I think that might be defined as ironic, taking the pill so that I can get pregnant).  The big voice is so loud, that all the little voice got in edgewise was a little comment about how I wasn't pregnant again this month - and it got stomped down with the whole "of course not, we know that doesn't work - but it doesn't matter, we get to try something that might work - so shut the f*ck up!"

It's a joy to get my period without the sadness that has accompanied it for the last two years, to get it with only a feeling of anticipation (and endo pain, but hell - it could be worse, I've still got Vicodin rolling around here, and so it's bearable - except for the dry mouth... that sucks!).

I called and left a message for Debbie - our nurse coordinator.  She's not my favorite so far (it doesn't feel like we've been that high on her priority list, so I don't feel like phone calls have been returned that promptly) but hey, so far we've just been a couple that had some plans to participate at a later date...  now we've actually got something going on.  I hope to hear back from her tomorrow, and I'm wondering if we can get my insurance to pay for the BCPs...  that might be nice.  In any case, this should get the ball rolling.  I know that we need to attend one of the IVF classes (gods I hope that they're not during the day - how much time do I really have to take off of work??  Really?) get our calendar, find out what kind of protocol we'll be on, find out if they want a frozen sample from Jakobe as a backup, find out which drugs we need to order, and so on and so forth.  

BTW:  thank you all for your comments and advice about our medications, it's been very helpful, and I am very grateful.  You all rock, each and every one of you!

30 things about my Invisible illness that you may not know...

This week is Invisible illness awareness week.  There are all kinds of invisible illnesses out there,  and they touch our lives in many interconnected ways.  My husband has Diabetes, I have endometriosis, we are infertile.  All of these things are invisible. When we walk down the street you can't look at us and say - oh yeah, they've got a problem.  You can't see if we're hurting, or tell if it's been a particularly rough day.  Looking from the outside, it's impossible to see all of the changes and adjustments made in a life to work around an illness.  But all of these adjustments, disappointments, and victories are still there, and they're just as hard won as visible scars.  SO I guess, I'm showing you all my invisible scars, just a little bit.  


I'm posing this meme twice, because for us anyway, my endometriosis and our infertility are two separate things.  They hurt in different ways, and have changed my life in different ways.  I'm starting with Endometriosis - because well, I've lived with it a lot longer.


My husband just held me, and stroked my head, and let me feel crappy.  He didn't try and fix it - just did his best to hold me and help me through. of Awareness, and hoping that I can help, just a little bit, to raise awareness of things that you can't see.

Question	Endometriosis Answer	Infertility Answer
1. The illness I live with is:	Endometriosis	Infertilty
2. I was diagnosed with it in the year:	1999	2010
3. But I had symptoms since:	Puberty for the most part - I thought it was normal until I was in pain every day.  I had several ruptured ovarian cysts in 1997, and I guess that was the big start of what I might call symptoms.	Symptoms?We started trying to get pregnant in June of 2009 - and well, it didn't work.  Turns out it had very little chance of working.
4. The biggest adjustment I’ve had to make is:	Sounds silly, but carrying narcotic pain pills pretty much all the time.  the last couple of years have been good to me - so my bad days are fewer and farther between, but they can be really really bad.  I spent a night in the ER last month, because I need morphine to make the pain go away. (that and we had to make sure that it wasn't appendicitis - again!)	Learning how to wait, let go, and not *DO* something.  I'm still learning, and it's still hard.
5. Most people assume:	I'm not sure what, if anything people assume.  I think for the most part, people just don't really know about or understand it anyway.	That it's not as big of a deal as it is.  It';s been one of the biggest stressors of my marriage, and there's no easy solution or answer.
6. The hardest part about mornings are:	Trying to figure out if I can make it to work without taking a pain pill on bad days.  It's a bit of a guessing game, and if I get it wrong, my day starts of really really bad, and it's hard to get ahead of it.	I still take my temperature - and the hardest thing is when it's going up and up - it makes me hope, even when there's no real reason to.
7. My favorite medical TV show is:	Grey's Anatomy, but House is a close second.  I guess it's all the interpersonal stuff in Grey's that really keeps me coming back.
8. A gadget I couldn’t live without is:	My barley pillow.  It's a take anywhere heating pad, all you need is access to the microwave.  I can heat it up in the morning before I get into the car, and then use it the whole drive in.	The internet, and this blog.  Without this outlet and the ability to talk about everything here, I think that I might have fallen apart.  everyone out here makes each day just a little bit easier to bear, and that's a great big help.
9. The hardest part about nights are:	Falling asleep.  The medicine can make me tired, but it also keeps me awake.  it's a major catch-22.  Can't sleep without it, can't sleep with it.	The dreams.  Sometimes they're so real, that it's wrenching to wake up to reality.
10. Each day I take 9-25 pills & vitamins. (No comments, please):	On good days, I just take my basics, on bad days it's usually 5-6 pain pills every 6 hours, plus the ones I take already.	I started on Metformin because we thought it might help.  I'm still taking it, but it's hard to say why sometimes.
11. Regarding alternative treatments I:	Stopped really believing that they work a long time ago.  I decided that I needed to stop looking for a miracle cure, and instead learn how to live with what I've got.  It's been working, for the most part.	Since I struck out so bad with alternative treatments with the endo, I didn't venture too far down this path - although Jakobe might have something else to say about it - I make him take a lot more vitimins that he ever did before.  Just Hoping that they might make a difference.
12. If I had to choose between an invisible illness or visible I would choose:	Probably invisible, I've got experience at it, and I can pretend to others that it doesn't exist.  I don't have to think about it on a good day.
13. Regarding working and career:	I've had to call in sick because I hurt too much to get out of bed more days that I care to count.  Also - I end up driving to and from work while on pain meds, because I just can't be gone that much.  It's a fact of life.	One of the things that irritates me is that my employer chose to have absolutely no infertility coverage in any of the 10 different insurance plans we're offered.  I wish that could have asked for that coverage in one plan - it would have been more expensive, but there would at least have been an option.
14. People would be surprised to know:	That I always worry that I'm being a wimp, and that I'm making a bigger deal out of my pain than it really is.	That I've thought hard about just not trying to have a family, and pictured what our life would be like.  It's not bad - and we travel, and buy nice houses, and have great vacations.  I guess it's Plan C, or maybe D.
15. The hardest thing to accept about my new reality has been:	Accepting that it won't ever go away.  Most of the time I refuse to let it mess with my life or my plans anymore	That I can't fix it.
16. Something I never thought I could do with my illness that I did was:	Go off of birth control.  When I finally found one that really worked to suppress the endo, it was like the world was a completely different color.  I dreaded stopping it, and didn't want life to go back to how it was before.  Right now, I'm hormone free, and I guess I've learned to live with it much better than I did before, because it hasn't been as terrible as I feared.	I don't know yet - Right now, I'm not sure that we'll ever be able to have children, and That's something I want to be able to put behind us.
17. The commercials about my illness:	Don't exist.	Well, they aren't about infertility per-se b ut that while Pregnancy test commercial thing - so very directed at women who are trying (and not being immediately successful) to get pregnant.  No one else really has all that much interest in which test can tell you one day sooner than the others...  and infertiles often buy lots and lots of pregnancy tests...
18. Something I really miss doing since I was diagnosed is:	I guess I have this one easier than other people, because I don't really think of anything I've actually given up anymore.  I miss having a completely pain-free day, but then again - I hardly notice on most days.	Spending money on frivolous things - every time I spend money now, I think about how it sets back our family building goals.
19. It was really hard to have to give up:	Right after I was diagnosed, I gave up going to school, it was too much for me to handle, and I couldn't figure out how to function well yet.  I've since gone back - but that was a very hard choice to make.	The picture in my head of what our life was going to be like.  Right now I have a fuzzy indistinct tapestry of hope and fear, and there's no clear picture.
20. A new hobby I have taken up since my diagnosis is:	The SCA (Society fro Creative Anachronism)  Playing there involves a lot of different hobbies, wrapped up into one. It's great!	No new hobbies - my time was pretty full before, and I'll admit to being a little bit obsessed.   Its' still pretty new, comparatively.
21. If I could have one day of feeling normal again I would:	Honestly? Revel in it.  Have lots of great sex and not worry about if I'll end up hurting later!	Be happy, and remind myself about who I am without all these desires hanging over my head.
22. My illness has taught me:	That I can deal with a lot more than I ever thought I could.	That I love my husband more than I ever thought possible.
23. Want to know a secret? One thing people say that gets under my skin is:	I don't have anything here.  I don't tell a lot of people, and If I do, they don't have much to say.	"You can always adopt."
24. But I love it when people:	this pretty much follows along with number 23...	Give me space, and don't try to give me advice or fix things.
25. My favorite motto, scripture, quote that gets me through tough times is:	I don't have a lot of quotes to carry me through tough times, but I'm always telling myself  "It is what it is.  You can't go back, and you can't change things.  The only thing to do is move forward, and try to figure out what to do from here."
26. When someone is diagnosed I’d like to tell them:	That it sucks, but that it isn't the end of the world.  That I thought that it was a death sentence for the life I had planned - and that it would make me miserable forever.  I was wrong.  Tame passes, you adjust, and you learn that you can deal with whatever you have to.  it stops being such a big deal, and you learn to cope.  You can have whatever life you want.	I'm so sorry.  There are options, but take you time and figure out what is right for both of you.  Hold on tight to each other, and don't let go, and you'll find a way though it to whatever then end of the journey is for you. (yep - I'm still telling myself this.)
27. Something that has surprised me about living with an illness is:	That the living with part is never as hard as you think it's going to be.  It's hard, but never impossible.
28. The nicest thing someone did for me when I wasn’t feeling well was:	My husband just held me, and stroked my hair and let me feel crappy - but he was there for me.
29. I’m involved with Invisible Illness Week because:	I want to raise awareness and participating might do that - at least in a very small way.
30. The fact that you read this list makes me feel:	A little awed, and a little weird, and a little hopeful.

Go See what other people have to say about their invisible illness over here: http://invisibleillnessweek.com/2010/08/10/share-about-your-life-with-illness-with-our-30-things-meme/


and - Many thanks to Karen at Bitter-Sweet Diabetes Blog for making me aware of Invisible Illness Week.

An unexpected evening

I guess that this is what happens when I go unsupervised. I'd tell you exactly why I'm here, in this very comfy bed, in the sexiest gown style of all time, but we just don't know yet. It's *not* a kidney stone. appendicitis is still on the table though. other than the fact that until they gave me morphine I hurt like hell, I'd say it's probably nothing.

But even here I'm an infertile. They ask if you might be pregnant before they give you a catscan... but, not so much of a worry for me, right?

The crazy part is that I keep thinking that the ultimate irony would be if I had an ectopic pregnancy. Crazier than that, part of me thinks that that wouldn't be all bad. I'd still be devastated though.

I'll fill you all in later, when I know something.

*UPDATE* nothing, no explanation, probably the endo.

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Good Advice

My sisters are all younger than I am, but that doesn't mean that I ignore them, especially when they're giving really excellent advice.  Meg had some for me on Saturday, and I'm trying (albeit unsuccessfully) to take it more to heart.

For a little bit of background, my sister Meg is here on infertility island with us - over at RPL Bay, and she's been here about a year longer than I have.  In truth it's as much observation on her part as it is advice, but Here's my best approximation.

She thinks that part of our struggle is because I'm so goal oriented, and if I want something I make a plan, and figure out the steps needed to get there.  In terms of TTC, this meant that when we actually started trying, I jumped in headfirst.  Non of that easy, we won't prevent for a while and we'll see what happens for me.  I started charting, and planning, and generally doing my damnedest to get knocked up as fast as possible.  Some of that was fear, because I knew that things were probably not going to be as easy as they might have been because of my endometriosis.  Part of that was expediency - the endo makes having periods miserable, and I was sure that being off the pill was going to suck, I'd actually had a year an a half of periods that *didn't* suck.

Now that I've filled you in on my attitude, and my excuses explanations, we can get to her advice/commentary. She thinks that part of the reason that Jakobe may feel threatened by the idea of kids (yep, he thinks that he might lose me to the child, and I wouldn't have time for him anymore) is because I've been so focused on having them.  That maybe I've made him feel a bit like a means to an end.  That I should back off, and give him space.  That maybe what we need is some time to try living just the way we are.  And she might be right.

But...

...I'm 30.
...I don't want to miss out because we waited too long.
...I need to know what we choose so that I can do the right thing by my body.
...I can't seem to make myself stop wanting.
...I don't know how to let go of goals/dreams easily.
...I want that piece of *us* to carry us in to the future.
...I want to see Jakobe and our child together, someday.
...I want to try.

A year and a day

It's a little bit of a stretch to call it a year and a day, but it seems right.  One year ago Jakobe and I were starting on this journey.  We had thrown out the pills and were waiting (not so patiently) for our honeymoon.  We'd been married for 5 months, and were splitting the difference between how long I wanted to wait to start trying for a family (not at all) and how long he wanted to wait (one year).  Part of me was hoping that my worries and fears about my ability to get pregnant were unfounded - and we'd have a honeymoon baby.  I was hoping that my endometriosis hadn't screwed things up, but I felt like I was prepared for it to take a while. That was my whole argument for moving up the timetable: It probably won't happen right away or easily, so even if we start early we probably won't be pregnant before the 1 year mark anyway.  I really wanted to prove myself wrong.

I was happy and excited.  The idea of us starting a family that was larger than the two of us make me very happy.  I was tired of waiting, and thought that even if it wasn't easy, it wouldn't be that hard.  I went out and got a short term disability policy at work, confident that it would pay for itself even it it took us a year to conceive.

What has followed is a year of ups and downs.  I spent months hoping that I was pregnant, eating carefully, not drinking for two weeks a month, taking pregnancy tests from about 10-11 DPO onward.  Jakobe says that I spent the last part of every cycle looking like someone had kicked my puppy as I came to grudgingly accept that I wasn't pregnant, yet again.

In the middle of all of this, Jakobe was diagnosed with Diabetes.  and not just type two, you need to watch what you eat diabetes, but Insulin-dependent, give yourself 4 or more shots a day, and watch what you eat diabetes.  The kind that comes with lots of risks: short term ones like low blood sugar, and ketoacidosis, and long term ones like heart disease, stroke, and losing the feeling in your extremities.  Saying all of that makes it sound terrible, but it wasn't that bad.  He got right on top of it, and has it so under control that his doctor is very pleased with him every time he sees us.  We deal with the lows as they come, and even those are usually few and far between (except this weekend - he was low a lot!).

Then, after the holidays, when I was considering a laparoscopy because uncontrolled endo sucks, I asked Jakobe to get a SA.  I thought that we should know that there wasn't anything on his end to deal with before using up the post-lap fertility boost.  And we got knocked down again.

In some ways, it's been easier for me since we found out.  I don't spend every month hoping that I might be pregnant (at least I don't seriously entertain the thought), so I don't test, and I don't worry about making sure that I don't have a drink or two, and I think I get the "Kicked puppy" look a little less often.  BUT - It's also been harder.  I feel responsible for making Jakobe feel like it's all his fault.  I don't feel that way, in fact to some extent, I feel like it's my fault for wanting kids too so much.

One year later, and we're back to waiting, and wondering if it's something that will happen for us, at some time in the future.

And then for the real thing

It was definitely just spotting the other day.  Maintenance is here in force.  Endo Sucks!  And right now I'm not exactly sure what I can do about it.  It seems like it's getting worse every month again.  Even given how much I complained about the Yaz by the end of the time I was on it  - It gave me bad PMS, and I was having acne problems - I was doing pretty well on it.

Once you get away from pain, it's easy to forget exactly how bad things were, and while I was on the pill, I forgot, or at least it became less distinct.    Right now I'm wishing for something I can do to not have to deal with this, but at the same time, still be able to move ahead with whatever plan we have for getting knocked up, as soon as we have a plan.  I don't want to go back on the pill, just to find out that we have a chance if we do IUIs, and have to wait longer, besides, it take s a while for things to fget better with the pill, at nothing takes away my everyday pain, just the all out suckfest that is maintenance.

Plus there are things that I'm afraid of - like Lupron.  That was a miserable experience last time.  I understand that I get to take it again, if we go the IVF route, but it's not the same thing as when you take it for Endo.  Menopause sucks, and doing it 3 times would not be my cup of tea.  And I still want to put a lap as close to actually TTC again as possible, just for that lettle bit of extra fertility juice it sometimes provides.

So, we wait, and do nothing.  I wouldn't worry about this too much - it could be the vicodin talking.

The work thing from the other day seems to be all worked out.  I need to remember to keep an eye on my absence statement - when it comes - and I'll dispute the time if it shows up, but It sounds like the bosses have it all worked out.  I can use makeup time, for an hour or two at a time - but not much more.  I think that means that I get to show up for about 45 minutes next Friday, and then go to the urology appointment, and then go back to work.  It's a pain, but whatever I have to do is what I'll do.

AND - I need to remember to talk about something good.  I worry that sometimes this blog gets all the yucky feelings from my life, and no one gets to hear about the good things:.

Jakobe and I have been out riding our bikes on the weekends, and it has been great.  I love to ride, and I think he's enjoying it too.  Last night I was thinking that I would go for a ride soon that just keeps going as long as I can, until I'm just wrung out.  I feel like it would be good to try and push myself to the edge.  I haven't figured out how to do it yet, and still be able to get home, but I'm working on it.

And, the weather this weekend is absollutely gorgeous, we've been cooking and eating outside, and I might even dicide to do some yard work - making the back patio someplace I actually want to hang out.  Might even make it a place worth having patio furniture (what an Idea!)

Okay - enough typing, better go live my day.

No Change

It's funny, because I don't really have much of an update, but at the same time I feel guilty for not writing anything new.  Beginning in January, I promised that I would post at least once a week, and I thought it was going to be hard.  Instead, I've found that it has been incredibly good for me.  Having an outlet for all of my feelings, and knowing that someone is probably out there who understands helps me make it through the rough days.  Knowing that maybe my struggles will help someone else helps too.

Also, I signed up for International Comment Leaving Week (IComLeavWe or ICLW) and I feel like I need to do some sort of an introduction, so I guess that these needs coincide.  

Our Current News:  

• We're still waiting.  
• We're still not sure exactly what/how were going to tell Jakobe's parents about our infertility.  I just know that hearing "You know, if you and Jakobe decide never to have children, we'll love you anyway." again is going to result in me saying something I will regret, and/or making a scene.
• I double checked with our benefits person yesterday and verified that none of our 8 options for health insurance plans have *any* infertility coverage at all.  
• My head nearly exploded earlier this week when two of the people who were supposed to be in the office while we were at the urologist appointment decided to take that day off, meaning that we have almost no coverage if something goes wrong.  As bad as I feel about leaving one person to manage everything the morning of the 30th, I put my request in first, and if my two bosses think it's okay to take the day off and leave the office almost empty for half the day, then that's their call, not mine.  My personal life has to come before work sometimes.

And a welcome to ICLW visitors:

{Stepping up to the podium}

Thank you for stopping by.  I'm Jenni, and my husband and I are infertile.  I have endometriosis, which may or may not be impairing our ability to reproduce because my husband has crappy sperm so we've never really tested it.  I have always wanted children, in fact my initial plan was to get married at 19, and have 4 kids by about age 27.  That unrealistic plan was completely blown out of the water by that fact that I didn't even meet my husband until I was 27, and got married at 29.  

We spent most of the first year TTC hoping that we'd have good luck and assuming it was my fault that we weren't successful.  I had most of the testing right as we started, so the next step was a repeat laparoscopy for me.  I thought we should make sure that we had taken care of any possible issues on his side before I had surgery, and to our shock all of the news on his side was bad.  

Now I don't get a laparoscopy right away, which you might think of as a good thing, but I'm one of the lucky ones for whom endometriosis is not a silent problem, instead it's more of a screaming, tearing, ball of pain in my abdomen for a couple of days a month, and a gnawing, dull pain the rest of the time.

We're waiting to go see a urologist, and find out if there's a possibility that his crap sperm is caused by retrograde ejaculation (a complication of diabetes) or possibly some sort of ejaculatory duct obstruction, or even something we haven't thought of yet.  If so, maybe there's something we can do.  If not, we feel like we're most likely looking at IVF.

{stepping away, and finding my seat}

Thoughts from Limbo

I'm more than willing to admit that I'm at the beginning of this journey, but it seems like it's one of the challenges that comes to be part of your personal definition either as an individual, or as a couple.  Infertility is seeping into all the different parts of our life, and coloring the way we look at and interact with the world.  

It's changing how I look at everyday things, how I interact with other people, mostly right now it's changing how much I interact with other people's kids.  I keep trying, but as much as I like them, and as much fun as it is, it hurts.  While driving to Easter breakfast at my aunt's house on Sunday, Jakobe and I chose a code phrase in case it got to be too much and one or the other of us just had to get out of there.  Thankfully, we didn't need it.  How long will we be able to keep that up? How long will I feel guilty about planning to go on vacation (which I know that we need) because we could be saving that money to pay for possible treatments?  How long will the pain of this keep us from the intimacy we were just starting to get on level ground with?  How much is too much?  How will we know when it's time to stop?  Haw will we be able to keep it from tearing us apart in the meanwhile?

There's a part of me that feels like I need to accept that it might never happen.  Even now, there's a part of me that feels like we shouldn't try too hard, because this is hurting us as individuals, and as a couple. At the same time, the idea of not trying is like looking out into a future that looks like I imagine Mars is: beautiful in its way, but empty at the same time.

That and just thinking about not trying makes me want to cry - So I'm sure we're not even close to there yet.  I just don't want to let this take over all of the good things we do have.

We still have 3 1/2 weeks before we see the urologist, and we can't expect him to have answers, just a new set of questions.

End to Endo Study

I just saw this over at Baby, Interrupted and thought that re-posting was a good idea.  I read through the info, and signed up this morning.  You can head directly over to www.EndtoEndo.com if you would also like to participate.  It's easy - just spit in a cup, answer some questions, and share your endometriosis related medical history and records.  It won't change anything for me, but better understanding of the disease my help out others someday.

Nope - No Kids Yet

Don’t you just love it when CD1 is the day when someone decides to ask if you think you might want to “do the family thing?”  It’s such a loaded question.  My vagueish answer of “When we can” was met by the advice to not wait until we can afford it, because that day never comes.  All I could really think at that moment, was that we have to wait until we can afford it, because it’s not the having of children we have to save up for, it the out of pocket expenses involved in along the way while we’re trying to start a family.

Urologists aren’t cheap.  Neither are Reproductive Endocrinologists, Semen Analyses, Hormone tests, Hysterosalpingograms, Vitamin supplements, and any number of other things that we’re probably going to have to pay for, or re-do at our own expense.  All of that is before we get to the costs of In Vitro, which is where we think we’re headed. 

We’re not rich.  We have extra money in the budget, but as soon as I finish school we’re looking at $600 a month or so to repay our combined student loans, and that’s a good chunk of our extra income.  So, we’d better figure out how to get all of this at least started before we go there.  Saving up for IVF and paying for the related and other expenses along the way is going to take us at least a year – Maybe 18 months.  It’s almost more than I can think about.

Especially on CD1, when I’m drugged out of my mind on narcotic painkillers and ibuprofen and it’s only working partway.  The day that I don’t even get to hope anymore: maybe I’ll get pregnant this month.  Did I mention that I hate my “girl parts” right about now?  They hurt, A LOT, and I just generally feel sick.  Tomorrow should be better, but I seem to have developed a new pattern: 

·         Two days before my period :

o   Moderate cramping, that makes me think - yuk, but I can make it through this,

o   Some spotting 

o   Take some Tylenol with Codeine, and a bunch of Advil.

·         The day before my period:

o   All symptoms are very muted – maybe it won’t be so bad.

o   More spotting

o   Take a bunch of Advil. 

·         The day my period starts: 

o   Enter the Mac Truck – YOU THOUGHT YOU WERE GOING TO GET OFF EASY, HA!   

o   The Colombia River begins to flow.

o   Pain, Nausea, Fatigue, and more pain.

o   Take a bunch of Tylenol with Codeine and a bunch of Advil

o   Give up on the small guns and break out the Vicodin. Continue to take lots of Advil.

o   Go home and curl into a ball.

That’s  the day I get asked if I’m going to have kids, without fail, every month.  Let me tell you - If I didn’t want to have kids, and wasn’t trying my damndest – I might sign up for a hysterectomy, just so that I didn’t have to feel like this ever again.  It’s even enough to make me consider going on Lupron again – and that was probably the most miserable six months of my life.

Writing on the chalkboard

One of the most unfortunate things that go along with stress and depression is sleep disturbances.  I don’t want to get out of bed, and I can’t fall asleep or stay asleep.  I toss and turn from about 4 am on, and when I make it to bed at midnight, and take an hour or more to fall asleep, it doesn’t make for a restful experience.

This week has been full of both positives and negatives.  We did get a referral from Jakobe’s endocrinologist to see a urologist, and they called us to make an appointment.  But – the appointment isn’t until April 30^th.  His endocrinologist also said that given the fact that his SA was so terrible, and that his hormone levels are normal, he thinks we’ll need to go the IVF route.

I emailed my primary care doctor to let her know where things are right now, and she’ll be happy to help me find a specialist when it’s time to treat my endometriosis again.  Part of me is not happy about putting off my treatment, because it means that I get to live with the effects of endo in the meanwhile. 

Anyway, the thoughts and feelings that have been swirling through my head haven’t been helping my sleep problem.  Neither has the fact that it’s finals week, and I procrastinated writing a paper that is due today.  I crawled into bed last night after taking 2 Advil PM, and 2 melatonin.  Laying in bed and waiting to fall asleep, I started to use one of my usual make-me-fall-asleep techniques: count backwards from 1000.   Instead of just counting I pictured myself writing each number on a chalkboard followed by the phrase:  Everything will turn out as it should.  You know  - just like “I will not kick boys at recess.”  Following the same line of thought, that we can change thoughts and behavior by repeating a phrase to remind us, I’m using my mental chalkboard.  Maybe, just maybe it will cause me to feel more optimistic.  Now all I have to do is remember to do the same thing tonight.

Endometriosis Awareness

I have an email in my inbox reminding me that it's Endometriosis Awareness Month, and when I stopped to think about it, I realized that I've been living with Endo for 10 years now.

When I was first diagnosed, I honestly thought that it was a terrible blow.   I had a chronic disease (that hurt like hell) and it was never going to go away.  I felt sorry for myself, but at the same time I did everything I could to make my life better.  In 5 years, I had 3 laparoscopies, Started and ran a mostly unsuccessful support group, did more research than you can shake a stick at, and the end result was that I spent a lot of time taking pain medication, and I still hurt.

Then - I gave up.

Or more honestly, I stopped thinking that anything would change, and I accepted the way things were.  I continued to take pain medication as needed, but I mostly ignored the whole problem.  I went through several birth control options, as well as no hormonal control at all, and finally found something that worked for pain when I went back onto birth control when I met my husband.  It made me extremely PMSy, but I suddenly I was living in a world of light, short periods.  A world where I could get through with only Advil.  A world where I didn't have to dread the coming of my period because it was miserable, but instead only because I had to abstain for a few days.  Wow.

Then - we decided to try and have a baby.

It's amazing how quickly we forget unpleasant things - like how bad having a period was before we found a birth control pill that worked.  I slowly fell back into the monthly cycle of dread, except that it was mollified by hopeful anticipation that maybe I would be pregnant, combined with the new dread that I wouldn't be, and an increasing feeling that our inability to conceive was due to my endo.  When we first started trying I was able to get my hormones checked, and I had a HSG to make sure that I still had good tubes (and one of them was, the other one was inconclusive).  Until only a month ago, I was still looking at how to time another Lap to increase our chances (and not incidentally - grant me some pain relief for a while).  I felt responsible, every month when Jakobe apologized for not getting me pregnant, for wanting a baby and my body failing.  Endo sucks - it makes you doubt your ability to do one of the more basic things in life, and it makes you feel physically poor at the same time.

In the larger picture - Endo certainly wasn't the end of the world.  I learned to cope and I am a generally happy  person despite it.  But - it's something it would be nice to be able to put behind me.  A cure - or at least an effective, long term, conservative treatment that doesn't further interfere with fertility (or even, just maybe restores some of it) is a dream I can get behind.

Test Anxiety

And, it's not even me who's taking the test.  I'm getting very nervous about Jakobe's SA on Wednesday.  As I told him last night, it's not so much that I'm afraid of what the results will be, but more of what his reaction to a poor result might be. He tries to take the blame for everything anyway, and even though we already know that I have problems, he feels responsible because he hasn't been able to "give" me a baby.  In response, I'm feeling guilty  for even asking him to get the SA.  I feel like it will be my fault if he's upset by it, because I'm the one who asked him to do it. 

On my side of things, I still don't have a recommendation from my doctor for a different doctor.  And, I expect I won't be able to get an appointment right away when she finally gives me one, so we're looking at a couple of months of just doing what we have been doing.  I did call my old doctor's office and they mailed my records today.  Hopefully the US Postal Service can get them to Spokane pretty quickly.

I will not cry.

I was right about getting my hopes up.  The crash hurts a lot worse this way.  In today's news:  I'm not pregnant, again.  What a shock.

I guess it's like playing 5 card stud, when your first three cards are a 2 of spades, 6 of Hearts, and a 8 of clubs - you're screwed.  That's how I feel like we're doing.  I've got endometriosis, and possible poor ovulation, and Jakobe has at least some retrograde ejaculation.  But we just keep trying.  Hoping that next time we'll get a hand we can play.

So, my sore boobs can stick it in their ear, and in a day or two after my period actually starts, I'll stop feeling sorry for myself, and be ready to try again, with some sort of new plan.  Maybe Jakobe's SA will tell us something else we don't want to know, or maybe, just possibly, nothing else is wrong.  I've got Metformin, and maybe another laparoscopy that I can do, and apparently from research I was doing yesterday, we can solve the RE problem with sudafed for Jakobe.  We're not without hope, or a plan.  Plus - I guess this gives us a little more time to increase our savings, and me more child free time to finish school.  It's just not what I want.

Hope and Frustration

The funny thing about trying something new when you're trying to get knocked up, is that the moment you have a new plan, some part of you thinks that everything will be different this time, and miraculously you'll get pregnant. Then the rational part of your brain kicks in and says: What the FUCK are you thinking? This is pretty much how I feel about Metformin. Part of me really wants to think that it's going to just miraculously wor, and the other part of me knows better. Plus - Metformin has finally stopped making me feel like shit or more literally like taking a shit(all the time).

The frustration part of things, is that my doctor finally called me back. The records she was going to look over have disappeared into the ether. They have the electronic records of my old visits, but the full records are missing, Except for the ones from one visit to another doctor in the practice - in 1997. So, joy of joys, I get to try and track down all of my old records from doctors from before this one... And I need to figure out what the heck happened with my last laparoscopy. It was apparently done by a doctor I don't remember ever having seen. SO I have nothing further to report. She doesn't have enough information to make a reccomendation, and I have learned that it costs between 70 sand $1 per page to get your own copy of your medical records. Another way that the healthcare system screws patients. Don't get me started.

I guess this is no news

I said that I'd include an update after I saw the doctor today. What do I have to show for my visit? A semen analysis kit for my husband, and instructions to call back in a couple of days to see if they got my records out of storage so that they can send them to another doctor. The only possible recommendation she had for me was another course of Lupron, which would put me on hold for at least 3 more months, and make me miserable. Plus - most of the time, you shouldn't be on more than 6 months of Lupron in a lifetime. Did I mention that it SUCKS! no one should have to go through menopause 3 times. SO anyway, back into the holding pattern. If I go directly to an IF specialist, everything starts to cost a lot of money... which I don't feel like we have.

Anyway, I should breathe.

I know that's what Jakobe would be telling me right now, mostly because I just got off the phone with him, and it's the equivalent of what he did tell me. "It will all work out. Or it won't. Either way, we can exhaust our resources trying, and they'll come back later. I love you more today than yesterday, and that isn't going to change. God won't give us more than we can take" I take exception to the last one, mostly because I may not be given more than I can take, but I certainly be given more than I would ever want to, or more than I feel is reasonable. Oh, and the whole not believing in a singular god thing, but hey, we can't have it all.

“Hello, this is your uterus – I’m going to make today a living hell.”

This is pretty much what I woke up to this morning. It amazes me how easily I forget from one month to the next how awful being on my period makes me feel. I spent all day snuggled up to a hot pack, and strung out on narcotic painkillers. But – I did it at my desk. At Work. Jakobe tried to tell me to stay home this morning, but I refused, because if I stay home because of the pain, then the endometriosis wins. Fuck that.

In the meanwhile, I have to decide if it’s gotten bad enough for me to consider having another laparoscopy. It would be my fourth, and I have to figure that every time, it just makes things a little bit uglier in there. Please, will someone go inside me and fry my insides with a laser? It will just hurt for a minute, and then I’ll feel better for a while. But, it won’t last. That’s the thing about endo, it grows on you. I’ll never run far enough or fast enough to get away from it. I’ve tried.

When I was 20 my doctor asked me if I could get married and have kids. Right away. I looked at her like she was nuts, and just kind of laughed. Marriage wasn’t going to happen then, you have to meet someone you’d be willing to put up with, FOR THE REST OF YOUR LIFE. Oh, and love would be good. In any case, I’m glad that I held out for the right man. Now we’re working on the kids thing, but my reproductive system is ten years and two surgeries more trashed than it was when she recommended that I not put off starting a family. Oops.

So I still have this angry gnawing beast in my belly searching for different ways of making me wish that I was born with testicles. I think I’d more than happily put up with getting kicked in the stones every so often. It seems like a fair trade.