Special Torture (or how to grin and bear it)

Recanalization!

August 13, 2012 | health, infertility, life | Permalink

I had put off posting, because I was concerned for more bad news, but so far, things continue to look good. Dr K, who I like much more then Dr D, agrees that the tubal recanalization is a good idea and that I am a perfect candidat. Dr T and Dr R (and their offices) followed through and it seems like everything is a GO. On August 29th, I will have my left fallopian tube recanalized! My insurance will even cover it!

Why Dr D just could not offer this as an option, I will never understand.  Ok, what I do understand is this – it might not work. They may not be able to remove the obstruction(s) in my tube. I also get that there is more then one factor effecting my fertility – even if they open up the tube, I may not get pregnant. I undertand that IVF is my best option. I also understand that it’s not a financial possibility. I can’t put us that far in debt. I just can’t.  It still just baffles me that Dr D refused to endorse my next best chance at some measure of increased fertility.

Oh well, no more crying over split milk and bad doctors. The good news is that my tubal obstruction is being addressed and it’s a simple in-and-out procedure covered by my insurance.  YES!

12 things you should never ask

August 13, 2012 | infertility, life | Permalink

Resolve linked to this.  Having dealt with half of these, I can honestly say these well meaning questions and comments do more harm than good.  I’d add a 13th item – don’t mention adoption. We know it’s a option. We haven’t forgotten.  But in a lot of cases it’s too soon to consider or it simply is not the right choice OR most pragmatically, it’s as cost prohibitive as IVF. To imply that something we dont want to do or can’t afford to do will solve all our problems is a bit hard to take.

It all started with yoga…

August 11, 2012 | exercise, health, life, pain | Permalink

For most of my life I have been lazy and out of shape. It’s just my thing. Also, I have a genetic condition that affects my lungs’ ability to oxygenate my blood. Again, just sort of my thing. I can only assume that the whole lack of oxygen situation probably played a pretty big roll in the not wanting to run around business, but for most of my life this cause and effect didn’t really bother me.  Exercise? Bah, who needs it? But then in my early thirties something happened. A shift of some sort from some unknown origin. Maybe I was bored with inaction. Maybe I was a little jealous of all the folks I knew that did stay in shape. Maybe it just finally dawned on me that actually everyone needs it. And everyone included me.

It all started with yoga. I had several friends who proselytized the benefits of yoga. It would help with my forever aching back, my never ending stress, my migraines, even my depression and anxiety. Maybe so, I would reply, but for a long time it was that anxiety that kept me from even trying. Hell, it kept me from trying most of everything. My anxiety kept me from learning how to drive, dropped me out of college, prevented me from having meaningful romantic relationships, and generally made me avoid a lot of stuff I actually wanted to do. It certainly wasn’t going to help me to put on sweat pants, go to a new place, and do something I had never done before in from of a room of strangers. And exercise at that. No, that was not really going to happen. Though somehow, someway the seed was planted. When I finally decided to throw caution to the wind and join the Y, the first thing I tired was the yoga class. My rational for joining the Y in the first place, was that it would not just be me and a bunch of jocks and janes who where younger, thinner and faster. It would be real people. Every age. Every weight. Every skin color. Every everything. And I was right – the Y is a magical, diverse place and the yoga class they offered twice a week was by no means an exception. I took one class and was hooked. That surprises me even now honestly. In those early days I was not sure what I was getting into, how far reaching the affects of my yoga practice would be come – that I would ever have a “yoga practice”. I just knew it was taught by Nikki.  She was kind, hilarious, down to earth, and she made me feel welcome from day one. For three years I went to her class religiously and I am still amazed by her ability to make newcomers welcome and to tailor her classes to the needs of her various students. Nikki was my first and will always be my favorite yoga instructor. That is of course how it should be and I am enormously grateful for it.

When a new yoga studio opened 3 blocks from my home, I was thrilled, but it was there that I learned how much I did not know about yoga. I had my first class taught by a different teacher. It was a vinyasa class and man, had I been sheltered. Nikki’s gentle, variable hatha class worked wonders on my self esteem and my ability to reach past my toes, but it maybe did not do as much to prepare me for the larger world outside of the charming, for-beginners yoga the Y offered.  Suddenly yoga class was an hour and a half,  hot and sweaty and HARD. It was not just about flexibility any more, but about strength. Serious strength and holy crap, that was an eye opener.  But strangely I was undaunted.  It took a lot of squirming and a shit ton of bravery, but I settled in. There were things I would never get good at and things I surely hated (mostly back bends on both fronts), but I gained confidence and found 100 other things that I did love to do with my body.  I got stronger, my breath got deeper and my heart opened. I got good. Which is weird, because I had never considered myself good at much of anything. I mean in terms or physical activity. I explored different teachers, different styles and studios, did yoga in the park, with friends, even at (gasp) at parties. Ha.

And yoga was my gateway exercise for sure.  Using my body stopped beng scary and started feeling really, really good. The Y was still here. I stared swimming, and using weight machines. I took my first pilates class. I started going to bootcamp for fuck’s sake.  Biking became something I did more then just to get from point A to point B. I stared taking, long glorious rides. Oh and then there were the walks. I got a pedometer and started going for 5 miles a day. I’ve even been known to jog. Another gasp.

Not that I want to give the impression that this all happened over night. I have been engaged in various combinations of all of these activities with varying amounts of enthusiasm for over 5 years.  In my mind’s eye, I can imagine a world where that progression simply continues and I get better at ALL of these things.    I become a person that can do wheel and handstands, a person that can jog a 5k, a person that can exercise every day and just revel in how great it feels to move my body and stay heathy while I am doing it. But I fucked it up. I pushed too hard and broke.

In November of 2010 I decided to do yoga every day for the month of December. It was going to be a holiday present to myself and the best way I could think of beginning the new year. It all started out well enough, but midway through the month I started noticing this weird pain in the back of my right leg. I have always been super flexible in my hamstrings so I was surprised, but by the same token, not that worried. I was probably just over stretching. I started to go easier on my forward folds. By Christmas (the only day I took off), I was beginning to get worried. It did not seem to matter how kind I was on my hamstrings, the pain was becoming constant and something awful was happening in my lower back. Something that got so bad, that by the 31th I was laid up in bed wondering how I was going to manage to get out of the house for New Years eve. And that pain has never really gone away.

Turns out I am (probably) one of the lucky members of the population that has piriformis syndrom. My sciatic nerve (most likely) runs through my piriformis muscle rather then behind it. Too much yoga shortened and tightened this muscle and now it compresses my sciatic nerve causing pain in my back, my buttocks,  and all through my right leg. Hilariously, on most days, I have a literal pain in my ass. Yup.  From that month to this day, almost all exercise I engage in causes flare ups in this pain. Even every day activity, like house cleaning or the mile walk to the grocery store can cause hours worth of pain. Walking five miles or going to a yoga class can result in 3 to 4 days worth of pain. If I ignore the warning signs and exercise everyday, I am in near constant pain. Mind you, I am no stranger to chronic discomfort. 33 years of migraines has gotten me pretty used to that. Though, a year and a half of migraines and sciatic pain has been a bit much. I take pain medication almost daily.

I am still working on what this all means. I feel like I should be able to fix this, but it’s been hard to figure out how. I don’t have any money to throw at the problem, so a lot of helpful stuff is out of reach. Mainly, I can’t afford the $50 copay to see a physical therapist.  I did see one for a few months last year, but I swear it was making it worse, so I have been reluctant to try again. Acupuncture helps a lot to relieve the pain as it is happening, but months of treatment did not help stop the trouble. Maybe I just can’t afford to go as often as I need. I recently had a one on one session with a highly skilled yoga instructor. She showed me a lot, I mean really revolutionary stuff. She even gave me the first real insight into how 30 days of yoga injured me so deeply in the first place. She sent me home with some brillant knowledge and what amounts to daily PT. That was 3 weeks ago and everything was going well until I had a 4 day flare up followed by crap load of infertility stress. My initial enthusiasm for her ideas and instruction was lost in less than a week. And now, like so many times before, I am floundering.  On most days I am just so tired and demoralized that I don’t even want to try. Doing the slow, constant, unrelenting work I suspect I need to do to correct this problem, holds almost no appeal. Imagine that. Mostly, I just wish I could have it like I did in the old days – when I could go to a yoga class or walk five miles without having days worth of pain as my only reward. God, I miss yoga SO much. I miss not being in pain too, but that’s a more remote memory.

I know I just need to start where I am, but where is that?  My biggest issue is going to be when and more importantly where this process of healing begins. More on that soon I hope.

 

A reversal of fortune?

August 3, 2012 | health, infertility, life | Permalink

Dare I dream? I’d better not, but I can at least pat myself on the back for self advocacy.

In addition to deciding that I needed a second opinion, I also emailed my Interventional Radiologist, Dr T, requesting that he put me in touch with his colleague who does fallopian tube recanalization. Recanalization is any procedure that literally reopens blocked or obstructed pathways. Dr T mentioned this concept to me the last time we met. He wanted to know how things were going with my baby making schemes. When I explained my many hindrances,  he enthusiastically endorsed this “newish” procedure.

As I was hitting send on the email to him, I thought to myself that the chances of this doc even responding to my email were pretty slim. But low and behold, within an hour he had replied. He was going to speak to this second doctor, Dr R, on my behalf, but it would probably require my fertility doctor’s blessing. When I responded that that would not be forthcoming, I thought the matter would be quickly closed. This did not dishearten me completely. I am after all seeking a second opinion. Perhaps this new doc would have a positive take on recanalization. You see, fertility doctor #1 (from this point on known at Dr D) told me in our meeting last month that she did not think tubal recanalization was an option for me. It just did not work,  she informed,  and furthermore I was not even a candidate. It would be best for me to forget about it. I started to cry (yup. cry) and explained that it seemed wrong to me to give up on something that might increase my chances of conceiving without drugs and IUI or IVF. I mean seriously, what was the worst that could happen? The tube is already obstructed. She relented only in so much as she said that I could pursue it on my own, but that she would not recommend it.

So imagine my surprise today when I get a phone call from Dr R herself. She was a little dismayed at how negative Dr D’s thoughts on recanalization were. Dr R (and Dr T before her) extolled the virtues or this procedure,  quoting very high success rates for the procedure itself and generally increased chances of conception afterwards and what’s more, she has taken a look at my HSG results and thinks I am a perfect candidate. What that fuck, Dr D?  Yeah, yeah, I get that doctors don’t always agree, but I have too diametrically apposed points of view here. I am extremely interested in what fertility doctor #2, AKA Dr K, has to say. More on this tomorrow I am sure.

Oh but in the meantime, Dr R’s office has called me twice and I have even gone so far as to set the date for the recanalization. August 29th. 7 am. Of course, I need to see if my insurance will cover all this. Dr R’s office suggested that insurance companies that do not cover IUI or IVF often do cover this procedure. It’s in and out – a same day affair after all, but I will have to wait a few days to see how this all pans out.

Worst case, BCBS does not cover it and that’s it. I am right where I started from. Best case, I get to give it a try. Of course even then there are no guarantees, but man, doesn’t it seem exciting? Forward momentum! Action! Recanalization!

 

In Other News

August 2, 2012 | health, life, pain | Permalink

I got my second Botox treatment yesterday. For migraine management, not anything cosmetic. It still seems strange to me that anyone would use the root ‘tox’ in a drug name. I think we can assume that was not accidental.  Happily, I don’t mind be reminded of the fact that I have Botulism toxin under the skin of my face, neck, and shoulders. I think it’s kind of amazing. Better living through chemicals and all that. Actually in this case, better living though bacteria!  I just can’t imagine the men and women that get this for cosmetic reasons are so keen on that idea and I would not think Allergan would not want to remind them of that. Though come to think of it, who names their pharmaceutical company Allergan? That name just screams ALLERGEN. Weird stuff.

Any any rate, if the second treatment is anything like the first, I am looking forward to a few weeks of decreased pain. It’s well known that the drug’s efficacy can increase with a second set of injections. So it’s reasonable to expect a decreases in the frequency of my migraines as well. Reasonable, but perhaps unlikely. Like with so many things, I think it’s best not to get my hopes up and perhaps I’ll be pleasantly surprised. Also pleased to note that my forehead feels less paralyzed this time around. So far anyway. I think I am still within the window of symptoms setting in. Which is good news, because as I type these words, I am getting a migrane aura. bleh.

Disclaimer

August 2, 2012 | life | Permalink

I curse. My grammer, typing, and spelling are horrendous.  I don’t have the aptitude or attention to correct any of it.  Sorry.

A second opinion

August 2, 2012 | health, infertility, life | Permalink

It’s time for a second opinion.

I could list all the things that my reproductive endocrinologist has done, not done, said, not said, forgotten, glossed over, fucking made light of,  or simply shrugged off, and maybe you would get how disappointed and angered I am by this woman, but well, it’s a long list.  I am not even sure where to start. So I’ll begin with today – Today, in a follow-up ultrasound, she could not find my right ovary. Yeah, I wrote that.  She informed me this made sense since they must have removed it [MY OVARY] durring my cystectomy back in February. Um, no. They did not remove my ovary.  I expressed my disbelief and she felt compelled to check my records.  “Oh right. In your post-op, it was there”. Yeah, I knew that.

So, I get that docs are busy people. I get that it’s hard for them. I do not always have the best days on the job, but it would be nice if she knew who the fuck she was talking to. Look at my records before you walk into the room, woman! I do not know how many times I had remind her that I have an obstructed fallopian tube.

“Oh but your left ovary looks wonderful”, she muses.

“But my left fallopian tube is blocked” I reminder her.

“Oh”, she says time and time again.

So yeah, today she can’t find my right ovary. Awesome. Totally inspires confidence.

And lets not forget, she is the doc that has taken my long, in depth medical history. The lady that knows, I have HHT and had a stroke when I was 23, yet this is the same lady that advices me to consider the AMIGOS study. The same study that I do not, and never will, qualify for since I had a stroke. Maybe it’s just hard to keep track of it all. Or maybe she is just a thoughtless piece of shit. Sorry. I know that’s harsh, but that is how it all makes me feel – like a piece of shit… That I spent 8 months hanging on her every diagnosis, her every word. Hoping, against hope that I will hear something that I can trust and count on.

I would LOVE to hear her defense. LOVE to give her a chance to explain her shitty care, but she interrupts me. She shrugs her shoulders. She explains that a missing ovary is nothing to worry about and walks out of the room. For real.

So anyway, time for a second opinion. Hospital #2, you are up.

 

Ouch

August 1, 2012 | health, infertility, life | Permalink

So the good news is that I wont be taking any fertility drugs. Whew. The bad news is I wont be participating in the AMIGOS study.  I did not qualify. Not because I have an obstructed fallopian tube. Not because I had a grapefruit sized cyst on my right ovary. Not because I have crappy hormone levels. Not because his sperm count is borderline. All that other shit would have let us pass. I was disqualified because I had a stroke when I was 23. Ouch.

So it’s perhaps important to note here that I really would not be able to qualify for ANY study that includes the use of fertility drugs.  All because of that incy wincy stroke 15 years ago. Thank you, HHT, Thank you.

 

Tomorrow

July 31, 2012 | health, infertility, life | Permalink

We are going tomorrow to see if we qualify for a that study that would give us four months of IUI with fertility drugs. I have never been so torn about anything. Never wanted to do and not do something so equally in my entire life. Well, that’s not true. I really don’t want to do this, not at all, but I would never forgive myself if we did not try. In equal parts. In any event, the next four months might be really, truly awful. Crazy on drugs. 8 appointments a month. 4 torturous two week waits. OR, I’ll find out tomorrow that we don’t qualify for some odd reason. Which will be devastating in its own terrible way, because my doctor has told me the likelihood of getting pregnant without assistance would be nothing short of a miracle.  Not qualifying will put me 4 months closer to the inevitable.

Of course I realize there is a chance that 4 months of IUI could actually get me pregnant, but honestly, I don’t believe that. I don’t believe that 100 months of IUI will do a thing for me. In truth, I think I have lost all hope of ever getting pregnant. When I think about the future – the next 4 months, the next 12 – I just see the disappointment. I only see me in one year’s time without a baby. I see having to deal with the loss. The only future I can honestly foresee is the greif and then eventual acceptance. And god knows how long that will take.

I can’t tell if it’s because I intuitively have this knowledge of my absolute infertility or because there is still some smattering hope deep down somewhere and I have to hide from it at all costs. Even the tiniest bit of hope makes each month a million times harder. Even a little bit of enthusiasm makes each flush of blood that much of a bigger heartbreak.

Having no hope at all might be the only way to survive the next four months. I can hear a dozen voices say (these are the same “just relax and it will happen” voices), “well, with that sort of attitude…” and all I can say to them is ‘go fuck yourselves’.

 

 

 

Lessons in compromise. And in eating your words.

July 25, 2012 | infertility, life | Permalink

When I first started thinking about having a family – this was in my late 20s or early 30s – I was exceptionally vocal about how I would never take fertility drugs. I thought it was selfish and foolhardy to do so. Why risk bringing more than one baby into this world when there were already too many who needed good homes. I would adopt, I proudly proclaimed, before I would take the drugs. I would go with none before I had drug induced multiple births.

Sigh.

I wish I could have talked to future-me at that point. Maybe if I had known how bittersweet the idea of having my own biological child would become, I would have tempered my anti fertility drug rants. Maybe if I had know that most adoption is more expensive than even the most state of the art assisted fertility procedures, I would have not been such a blowhard. Maybe if I had known that I would be infertile, I would never have rigorously lambasted one of the few options I would have to get knocked up.

But so here is the thing, I am still anti-assisted. I still agree with past-me. It’s selfish and irresponsible. What’s more, I also know that my insurance does not cover IUI (inter uterine insemination) or IVF (in vitro fertilisation) and that there is next to no way I want to find myself 15, 30, 45 thousand dollars in dept. I am not even sure which is worse – being that in debt with no baby to show for it or owing that much and bringing a child into our debt ridden lives. And lastly, I have heard the horror stories. I don’t want to take those drugs. Mood swings, hot flashes, weight gain, more migraines, more cysts, and multiple conceptions. I don’t think I have ever feared a group of drugs more than I do fertility drugs. And I have been on a lot of scary drugs. And for the record, I am especially anti IVF. Right now, in my mind, IVF is the NO-GO that any assisted fertility was 10 years ago. IVF is the boogeyman. Not because I thinks it’s a bad idea for most women. I just think it’s a terrible idea for me.

It’s just that willfully saying ‘no’ to drugs and some crazy procedure (and what might be the only means for me to get pregnant) is harder to agree to than I had ever thought possible.  It’s like giving up, bowing out, or simply saying, “I guess I did not want to be a biological mother after all”. Ouch.  And fuck, things change. People change. I am allowed to change my mind, right? Am I? I try to think that no one will find fault in my back-sliding. That I can live with myself and my hypocrisy. That I could survive the assit.

Enter the AMIGOS study.

Four rounds of IUI with drugs. Free. IF we qualify. We probably qualify. We find out next week. So this is it. This is present-me staring past-me and the face and seeing who blinks first. Of course future-me wins. I want a chance to be a biological mother and I am not ready to give that up yet.  I’ll take the drugs. As here is the compromise – In my mind IUI is half way between me and IVF. I’ll do IUI. I wont do IVF. Right? Right. IUI is half way to giving up. I still have some fight in me. I am still giving it that old college try. IF we get in to the study, I am doing it. I’ll be eating crow and I may not get pregnant, but at least I would have tired.

Right? Right.

But when the IUI fails and the IVF study presents itself, what then? Am I really going to be able to give up? Only future-me knows, god bless her.

 

A little History

July 25, 2012 | health, infertility, life | Permalink

So here is the scoop…

I am 38, well I was 37 when we started. In early spring of 2011, my beau and I stopped using birth control. By June, I decided I wanted to have a better idea of how shit worked so, by July I had a full month of fertility charting. By the time October hit, I suspected something was up. As far as I could tell I was ovulating each month, but all the perfectly timed sex I could have in 5 month hadn’t gotten me knocked up, so I went to the Doctor. By November I had a fertility specialist giving me the “full work-up” (what a bull shit concept that is. more on that later). So by December, I had one obstructed fallopian tube (left), a fist sized ovarian cyst (right), and the hormones (FSH, AMH, TSH) of a lady past 40. In other words, it made perfect sense I was not getting pregnant. I was a mess. Before the end of 2012 I had joined a Resolve infertility support group.

In February 2012, I had the cyst removed. Nothing could be done about the fallopian tube. I kept trying naturally. By April I owed the hospital so much, I could no longer seek “voluntary” fertility services, so I had to take a break from doctors until I could pay the bills off. I kept trying naturally. June came and went. A full year had come and gone. Now it’s July and I am still not pregnant. My specialist tells me that I have run out of “natural” options. That my only really choice to do some assisted fertility technique. My insurance does not cover anything assisted. I live paycheck to paycheck.

Yeah.

 

Unlucky 13

July 24, 2012 | infertility, life | Permalink

It’s been 13 months. More maybe, but 13 for sure. 13 attempts. 13 charts. 13 thermal shifts. 13 two-week-waits. 13 periods. 13 failures.  13 heartbreaks. Fuck 13.