Saturday, December 17, 2011

In-Law Christmas

Today (yesterday) was day 4 of muscle relaxers and Christmas dinner with my in-laws. Perfect! Actually, muscle relaxers have never needed to be an essential part of staying with my in-laws. They are amazingly easy and totally supportive. They are just one of the ways that I have been blessed. It's hard to hang on to these blessings in the wake of such a loss, but the best part about my blessings is that they are all waiting with me with open arms as the storm passes.

It's safe to say that I hit rock bottom this week. I've been there once before, but this time I had my amazing husband, two amazing friends, and my wonderful mother who were right there beside me. I didn't have a chance to make any other decision but to grab ahold their patient hands and stand back up.

It's not easy that this is all occurring around a holiday about an immaculate conception when I now know that I have <1% chance of conceiving and carrying a baby to full term without medical intervention. It's going to take a miracle for us to have a child, and it's extremely frustrating that I don't know what that miracle is going to look like.

 I do know that I've got quite a ways to go. I'm still considered a "young" woman in infertility land. We've still got every option we've had before. Through our loss we have more reason to be optimistic according to Dr. Donesky. We have lots of opportunities left as long as we are willing to try.

As I stewed in my own despondence these past few weeks I realized I was going to be a terrible mother. I cannot put the pressure of me being happy on an infant. How unfair is that? I may have lots of shortcomings, but when it comes to my baby, I'm ready for the challenge. I know I'm doing all I can medically, so the only thing left in my control is how I feel about myself. So as my body continues to heal, I'm going to use the time I have to work on being nicer to myself. It's a daily struggle for me to comprehend that bad things happen to good, undeserving people everyday. No one deserves cancer, cystic fibrosis or infertility. This includes myself. Shoo, I said that for the first time. We would love to believe that if we work hard, do the "right" thing, and be good and courteous human beings that good things will come our way. It's simply not true.

So in addition to my quest for spawn, I have accepted a new quest to search for my own happiness. Starting yesterday, despite the pain in my neck, I allowed myself to enjoy In-Law Christmas. I enjoyed being a terrible aunt to my 8 year-old niece who is now concerned that Santa won't come because her missing teeth are clearly evidence of her addiction to crystal meth. (It doesn't help that a property near her house recently "mysteriously" burned to the ground.) Ahh, I should probably feel guilty that she whispered these parting words to me when she hugged me good-bye, "MK, I promise I don't take drugs. My teeth will grow back. You'll see." Just melts your heart, doesn't it?

So far I've had a Happy Christmas. Even though no one can give me the one thing I desire most, they can't take away what I do have in my amazing friends and family. My Christmas wish this year is for everyone to take a moment to appreciate what they do have. I certainly will.

Peace, Love and Drug-free nieces,
MK

Wednesday, December 14, 2011

I'm Not Crazy

So this past week I've been in increasing amounts of discomfort.  I feel like my body just hates me.  It obviously started with the miscarriage which caused extraordinary cramping...No wait...it didn't...It started before my egg retrieval with a tooth that began to ache that hurt all the way to my temple, but there wasn't really anything I could do about it.  Plus, I was on IV antibiotics and taking tyelenol which kinda worked. It did kinda get better, but THEN I had a miscarriage and was miserable on all fronts. This includes suffering from liver poisoning (Not really, but then again, maybe...) and puking whenever I thought about taking ibuprofen.

When that sort of settled my mouth kicked it into high gear, but I had antibiotics, tylenol, and ibuprofen so moving on...

Yeah so I woke up last Thursday, like, 'eww I slept wrong'.  Friday pretty much the same no worse. So knowing that I had to judge a gymnastics meet the next two days with a bad mouth and a wry neck I tried to be proactive, and I dug up the pain meds I didn't take after my egg retrieval.  I took one and got no relief.  It says you can take two at the same time, so I took another one.  Fortunately, I wasn't driving to Clarkesville, so I could lie down in the backseat and pretend I wasn't suffering.  Only I was getting more and more nauseous.  So I spent 10 minutes puking on the side of 40E while my carpool was like, 'Eww.'  So if you're wanting to count, I've been nauseous for a week, better for 4 days and now back to puking on the sides of highways.

So like a charm, my uterus decides to remind me that I have endometriosis that has been aggravated for the last 8 months so I'm also having cramps like a dehydrated football player.  Luckily I kept enough medicine down to only be aware of the pain, but not care for the rest of the car ride.  After googling on my phone, I decided that I probably wouldn't die if I took benadryl (Loratab makes me jittery...and sometimes so does benadryl), loratab, ibuprofen and amoxicillin and if I did, I wasn't completely convinced that it would have been a bad thing...so it was win-win.  Day time functioning was brought to you by crackers, ginger ale, tyelenol and ibuprofen cocktails.  Plus we finished way early so I got to add my narcotics at 8:00pm and try to sleep until Sunday morning.

I got home around 10:00pm Sunday evening and my neck and mouth were killing me.  I laid down on a neck roll, and it felt SO good.  I slept without moving which was great except I woke up not being able to move when I wanted to.  My neck is frozen.  I had to roll on my stomach and slide off my bed because I couldn't sit up.  I cried because I was at my wit's end, but I put my big girl britches on.  I made it to work without killing anyone due to my inability to turn my head.  Once at work, I took a boat load of pain meds and held a heating pad to my neck and head. I was also freezing cold, but so was  everyone else in the office so whatever.  Shivering only hurt my neck more.  Oh and my dentist's office was closed when I got the chance to call...so bah humbug.

To make my evening that much snazzier, I got an email from a local community college that offers dual-enrollment courses on our campus that they were cancelling them.  Due to changes they decided to make in October (nevermind that these kids were scheduled for the courses in June) I did not have enough qualifying students enrolled for the classes to make. This is after I spent 12 hours last week working with students helping them apply and complete the dual-enrollment grant  and changing their schedules to try to make the classes work out and had everything done a day ahead of schedule (all the while, clearly not aware of the new requirements that I was supposedly told over a phone call I don't remember having).

So now I was physically miserable, and now totally sucked at my job which was the one thing I had going for me.  So basically, I felt like everything I was touching was turning to shit.  I killed my baby, I screwed up 37 children's schedules, and I can't turn my head or sit up from a lying position.  So yeah, tell me how I don't suck at life?  I spent the evening crying to my mother who was staying with me while BJ went to Jackson, TN.  I took a cocktail of meds and got into bed.  I woke up, and it was like effing Ground Hogs' Day.  I can't move, I hurt like hell and feel like my head is going to fall off.

On my way to work, my dentist called and asked me to come in.  They determined that yes I was in pain and that I needed to be taking antibiotics and Loratab and to come back in the evening to determine if I needed dental surgery because they had done all they could do for this tooth with previous dental work.  (I have crappy English teeth that I got from my crappy English ancestors but my gums are super-healthy!)  So at least some things were being treated. At work, I was told that we could have one of the dual-enrollment classes because even in East Tennessee 17 children minus 2 who don't qualify = 15, the magic number to hold the class.  So that made me feel somewhat better about my job...well that and the pain medication.  However, at 4:00pm once again I was told that the class was cancelled...apparently 15 at Gibbs does not equal 15 at other places in Knox County...WHAT-THE-HELL-EVER...

My husband came home and took me to the dentist.  I took another dose of pain meds thinking it would help my neck, too, so I did not drive.  We made it to the dentists office without me getting carsick, but I wanted to.  My dentist did not think I had an abscess because I had been on antibiotics and I was still in a bunch of pain.  He though I had an occlusion injury which basically means I sprained my face.  It could have been caused by a crown being too large for my mouth even though I didn't feel like it was too big.  He filed my crown down and said I would hopefully see improvement the next day.  He also gave me a new prescription for Tyelenol 3.  While still making me nauseous, it knocks me out...I don't care about being nauseous if I'm asleep.

So now I thought, 'OK I'm going to be in less pain and get a good nights sleep and everything will be better.' That evening I started getting a bad sinus headache...one of those leather band tied around your eyes kind of headaches.  I was also really cold, but again, I always am. The Tylenol 3 did it's job, and I fell asleep pretty quickly.  I once again woke up in terrible pain and not able to sit up without holding my head on so it didn't snap off.  My mouth was still sore as the anesthetic had worn off, my headache was still there, and my uterus decided it was not getting enough attention.  In other words, I was miserable.  I cried to my mother who told me I could go to work, or go to the ER.  I hate most doctors as they tend to be arrogant assholes up to and including my grandfather, but I loved him so I actually enjoyed his arrogant assholism.  Plus he had the added benefit of never being my doctor.  Anyway, I'm specifically thinking about the three doctors that let me be miserable for 14 years because it was "just part of being a woman."  So I went to work since my mother was yelling at me for being a pansy, but I did make an appointment with a Nurse Practitioner at a clinic close to my school.  I'm thinking if pain-relief isn't helping my neck, maybe a muscle relaxant would help me, and unfortunately I don't have any of those lying around so I must depend on a medical-type.

So 2 o'clock came around, and I waited and waited and waited and almost walked out, but they called me back before I had the nerve to walk out.  I swore to myself that I would not mention the headache, it was just sinus afterall, because I figured they would say, "Sounds like you're a woman with stress.  Try ibuprofen."  However, they would not be fooled as I was holding my head up by the bridge of my nose.  So I got the whole ordeal including taking my temperature.  The nurse looked at me and said, "Did you know you had a fever?" I responded, "No, I did not."  She said, "Well, you do."

OK, so in addition to losing 18 lbs in two weeks due to recurrent nausea. I have torticullis, an ear and sinus infection with a fever, a bad hair day, sprained face, a job assignment that requires other people being capable of counting to 15 when they can't, anxiety and adjustment disorder.  No wonder I feel like shit.  I'm actually sick.  Who knew?  So  in addition to muscle relaxers, I got a shot of Toradol which is an anti-inflammatory, a shot of steroids (hurt like hell by the way, and I'm no needle-phobe), a prescription for a stronger antibiotic, and more steroids in pill-form.

So this brings me to this evening.  With some home-made chicken stew (THANKS MOM, [even though you tried to kill me and made me go to school today with a fever]) and enough drugs to have a really good time tonight, I'm hoping to feel much better from the neck up really soon.  From the neck down...Oy vey...

*WARNING: If bureaucratic bullshit upsets you, don't continue reading.*

On the Lupron front so my uterus will shut the hell up, I received a letter from my prescription insurance saying your prior authorization has been approved. "Call this number for assistance with getting the prescription filled."  So I called the number, and was told that I needed to actually call another number.  So I called the other number and was told that my insurance had not approved the medication for me yet.  I'm all like, "but I have this letter," and they are like, "but it doesn't mean anything," and I'm like, "but it says it's approved," and they are all like, "It IS approved by the prior authorization department, but it has not been approved for dispensing to you" and, I'm all like, "That makes no sense. What the hell language are you speaking?", and they are all like, "We need information about why it was prescribed for you." and I'm all like, "That was what was on the prior authorization, no?" and they are like, "it did not have enough information," and I'm all like, "Well, what the hell more information do you need?"  And they are all like, "We need to know WHY it was prescribed," And I respond, "Because I have endometriosis, which is what the prior authorization that has been approved said," and they reminded me, "We are not the prior authorization department," and I nicely asked that since I was diagnosed with a condition that causes pain and currently in pain caused by the said condition if there was any chance I could get the medicine in the year 2011...and they responded, "Not if it takes that long to verify the prescription and diagnosis....At this point, I may or may not have said, "Go to hell you imbecile" and hung up.  You'll never know...

So this is a week in the life of the unfortunate infertile, the losing 15% that didn't get pregnant in two rounds of IVF.  The sad thing is, I'm really trying hard to be better...

Peace, Love, and prescription narcotics,

MK

Friday, December 9, 2011

Pain

I'm still hurting. I'm STILL cramping, it's not severe, but it's a constant reminder that I've lost. I still have chest pain. I still feel so broken. Emotionally, I hate what I've become. I hate that with all I have to do, the thing I look forward to most is sleeping. It's like I've lost all my emotional stamina. I can be stoic at work, but that wipes me out and I'm done trying to function.

I feel guilty for being such a drag. I know I was doing better at this point last time, but I was reminded that I had a bigger loss this time, and it is unfair to compare. I just want to get to the point that I can cope for a little longer. I'm not asking to be happy, but at least tolerable.

BJ and I have come to the decision that we can't give up. I could never live with myself if I gave up now. That pretty much speaks for itself. We had improvement, and we proved that my body could accept an embryo. The funny thing is it's not the blast we made like it is for Dr. Donesky, my father, or BJ that's encouraging them to encourage me. It's the the little three cell embryo that was still fighting even though it was four days behind in development. If three cells can fight that hard for life, then I sure as hell can. I'm so proud of that. I know that is all Shull-stubbornness right there.

I struggle mightily to accept where I am in my life. My goal for the duration is to be nicer to myself. I'm not infertile because I deserve it. I'm not worthless, and as much as I feel persecuted it's not that either. I've got to stop with the self-blame because ultimately I know none of this is my fault. It just simply is. So I need a new mantra. I need to quit looking in the mirror with disgust. I haven't figured out what that mantra is just yet...but maybe it will come soon.

Maybe CVS will come through soon. With a process that is guaranteed to be "24" hours it's now been a full business week. This is not my fault either. It's just bureaucratic nonsense. I would love to have been able to have had my dose of Lupron and start working on getting my endometriosis back in check, but whatever. Caremark you suck at life...just sayin'! They were saying yesterday they don't have a prescription but they had the prior authorization. Wednesday they told me that it had been rejected. Today they said they had the prescription but not the prior authorization. All I'm gonna say is that if someone ever goes all postal on them, I'm not gonna wonder why...

One day I'll be a mommy. Someway, somehow, BJ is gonna be a daddy. All this pain will be worth it. Through all of this, I bet we're gonna make pretty awesome parents!

Peace, all my love, and fighting the good fights,

Mary Katherine








Tuesday, December 6, 2011

The First Day of the Rest of My Life

...and it's not going so well.  My insurance bucked at covering the Depo-Lupron even though they say it's covered in their paperwork for treatment of endometriosis. I guess they don't like that it is coming from a reproductive endocrinologist. Meanwhile, I'm waving my arms saying just let me pay for it myself...but nay. Let me at least have something to help my situation but I guess my insurance doesn't think I deserve even that. So now we enter the appeals process.

Aside from a terrible headache, still having cramps, and still not being comfortable in any of my clothes, I'm having an awful day.  I want to cry, but I have too much to do. I'm so behind on Christmas and quite frankly I'd just as soon not celebrate this year, anyway.  I'm so unhappy and lost and holidays just seem to highlight all the worst parts of being infertile. I don't have any energy left to fake my way through it.

I feel like I have all this borrowed time that I don't want. I saw my evenings at this point of my life being occupied with entertaining a growing baby. Splitting time with BJ for diaper duty vs. cuddle duty, but instead BJ is just stuck with the zombie-version of his wife. People tell us we are lucky to be so "care-free" and can just do "whatever". Lucky? Care-free? Not to mention parenting is what we want to be doing now. It's pretty cold when people say things like that. Nor am I in a very good place to just brush stuff off.

I'm still just so disgusted with myself, my body, and this whole situation. I'm completely worn down and worn out. It just seems like I can't catch a break and even my health insurance is working against me. It's not like I signed up for any of this.

MK

Monday, December 5, 2011

We Don't Know

Today was the appointment that every seasoned fertility patient dreads.  The "Free Follow-up" you hope you get to skip because you have an OB appointment instead.  Instead, you sling your head really low in the waiting room ashamed of being on the wrong side of the statistics again and wish you could disappear.  Two new patients came in today.  They were both much older than BJ and I, and the females were both extremely overweight which means they probably have poly-cystic ovarian syndrome.  They have a tangible problem and even with their age probably have better odds than BJ and I do of having our own children.  It's more salt in the wounds.

My mom has been with me all weekend and went with us as a support to this appointment as well.  Dr. Donesky immediately pulled up our files and talked about how much improvement we did have.  We had a genuine grade-able blast.  He gave it a grade of 3AB (not the 3AA- which does not surprise me at all...I've been pretty confident Susan made that up for my behalf all-along) which is still considered excellent in quality and some clinics would have only recommended transferring it, alone.  We will never know if it was the 3AB blast or the early blast that implanted, but we do know it survived for a while and continued progressing to the point that HCG was circulating at detectable levels through my system.  We won't ever know if something was wrong with the baby, or if it was me, or if it was simply misfortune that caused the miscarriage.

Dr. Donesky did say that if he had to guess which couples would find success with IVF and which wouldn't, he would choose the couples who had a biochemical pregnancy over the ones who have never had a positive anything.  It's strange to not be classified in that group anymore, yet having nothing to show for it.  I wish I felt more confident about it.

He allowed BJ and I to ask questions.  I asked about doing a reproductive immunology panel, and he said he'd be happy to do it, but the research and results just did not seem to be promising. Studies are not showing increased success with the treatments for the immunological problems affecting fertility.  Reproductive immunology is a very progressive field, and there are lots of medical professionals that do not buy into it.  I don't know enough nor can I find enough research to make an educated opinion about it, but I'm certainly keeping my eyes peeled and am rooting for the people who I've met online that are doing it.  If I'd had multiple losses with perfect blasts everytime, I think Dr. Donesky and I, both, would be more interested.

Dr. Donesky had high hopes for the embryos we transferred this time.  BJ and I certainly did.  He told us we could take the easy way out if we wanted and try a donor egg cycle.  Knowing that BJ and I are not on the same financial level as Bill and Guilliana Rancic, it would probably be the closest thing to guaranteed success Dr. D can offer us.  For the life of me, though, I cannot accept being in my 20's, producing a strong number of  nice-looking eggs, and there still being something wrong with them.  You can't google "poor oocyte quality" without getting information about advanced maternal age and poor ovarian response, neither of which applies to me.  Dr. Donesky is not ready to throw in the towel either, and I promise you he knows a lot more about this stuff than I do.  He told us we have 10 years or more to try donor eggs, but if we want to try with mine, now is the time.

My mother chimed in at this point with a "What would you tell your daughter to do?"  Dr. Donesky said he'd tell her to try again.  He'd tweak things a little bit.  We talked about timing, endometriosis and the pain I've been having, again.  Endometriosis is an auto-immune disease, which kills me to say because it makes me feel like I'm really sick.  I don't feel like a sick person for at least two-thirds of most months.  It is possible that the endometriosis is creating an inflamed environment in my pelvis that may be harming my eggs.  He told us that eggs are on a 72 day cycle.  Dr. D has seen some endometriosis patients get better results after being suppressed for longer.  

After discussing with BJ and me for a few minutes about when we'd like to try again. He wrote a prescription for 3 months worth of depo Lupron.  Yes, more needles, but only 1 a month.  I will officially be in a medically-induced menopause.  This means no more pain, but no more trying to conceive either.  It means I have to learn how to live again.  In March, if BJ and I are feeling plucky and have found hope again, I'll switch to sub-Q Lupron and we can go for it again.  If we've found a happy place in this 3 bedroom + bonus house living child-free, then so-be-it.  We obviously still have that option...

Peace, Love and ?,
MK   




Saturday, December 3, 2011

This is Hell...

It really is.  I asked my nurse if we could just go ahead and schedule a hysterectomy.  She said it was way too early for me to even be asking, but where was she when I was puking my guts out at 3:00am because my stomach couldn't tolerate even ibuprofen at that point.  Where was she when I was biting my pillow to keep from screaming? Writhing in pain doesn't really begin to describe how my nights have been going since Tuesday, but I'm banking that at some point I will crash and sleep. However it doesn't seem like tonight is that night...

In my best moments I'm drugged up to the point I don't care about the pain, (like this present moment) but I'm still in pain.  It's like my entire abdomen has collapsed in on itself. My back aches, and I still feel so tender and bruised.  My stomach is still pretty messed up.  I'm mentally exhausted from the physical pain.  Not to mention that I've just lost the one thing I wanted most in the world.  In the breaks from the cramps the emotional pain seems to flood back in.  It's just a horrible feeling that I wouldn't wish on anyone.

Thank God for my mother.  She's here nursing me through this weekend.  Helping BJ and I put back the pieces of our childless lives back together.  Packing up the meds, putting the ultrasound pictures away, and clearing the path for us to resume our lives as they were, but BJ and I are forever different.  We both know pain like it's a close friend.  Disappointment, grief, sadness have etched themselves into our bones.  Thanksgiving will always be that holiday that we lost our first child.  What a juxtaposition?

I've said from the beginning that there are never any guarantees. No one can tell us if/when/or what the ending of this story will look like. Any decision we make has the real possibility of ending poorly. As many things can go wrong and do go wrong with adoptions as IVF cycles.  Paperwork gets lost, birth-mothers change their minds, agreements fall through.  There is not an easy way out for us. The only easy way out is to be fertile to begin with, and that has never been an option for us.  Deciding not to parent at all is the choice that is easiest to refuse.

Ask me if I would go through all of this pain again not knowing if we'll ever have children, and I will tell you yes.  I would walk through Hell for my child whether I ever get to experience them in this realm or if I have to wait until I get to the Flipside.  It is a lot easier to write this knowing I have the full support of my life partner, BJ.  In addition, we have the rest of our family behind our backs, too.  We still even have a few friends who haven't disowned us just yet.

I don't know what our future looks like and for a planner like me, it seems completely asinine, but that's apparently how it's going to be.  We have a follow-up on Monday with Dr. D and from there is anybody's guess.

Peace, Love and a little sleep would be nice,
MK