Friday, January 20, 2012

rage?

So today is p+17, and it appears likely that it will also be CD1. Two more months of HCG, and then I'm going to ask my doctor about depo shots. As previously mentioned, I am planning to retire from IF treatment around my thirtieth birthday (if I hadn't been moving and busy and that sort of thing, and had done all six months of HCG as soon as I got the scrip, I could have had my little retiring-from-treatment party on my birthday). Also as previously mentioned, I've already had two surgeries and don't plan on making that a regular thing; I promised myself that my very next surgery would be a hysterectomy. (And because some of these responses are just reflexes in the IF community at this point...no, another surgery would not help my fertility; no, the problem is not simply that the last surgery was done by my doctor rather than your doctor; and in fact, after the last surgery, my cycle didn't return for five months...five of the six months that would be my "best window" - for life, no doubt - in which to get pregnant. The only basis for more surgery at this point - other than a hysterectomy - would be insanity.)

But I'm only turning 30 - this is one of the few arenas in my life in which I wish I were much older - and I have a lot of time to go before menopause and (presumably) the natural remission of the endometriosis. As it is now, it is getting steadily worse - worse than it has ever been before. (SEE ABOVE ABOUT SURGERY. I WILL DELETE COMMENTS FROM PERSONS WITHOUT MDs RECOMMENDING THAT I HAVE MORE SURGERY!) Having a biological child is for me, at this point, not remotely realistic. I'm not particularly interested in adoption; my husband and I continue to discuss it, but while we're being relatively sporting about pursuing our waning options, both of us are expecting to live the rest of our lives childless.

So - please try to wrap your head around this; if you are infertile but have children, you might want to accept that that's just too difficult and go read another post (and no, I would not take this tone without a MOUNTAIN of evidence about people's inability to use their brains on this subject), by someone who has children or expects to have them - so: my future medical endeavors need to be directed to preserving my health and improving my quality of life, not having children, because I am not capable of having children. It's OK, go back and read it again. As many times as you have to. (It is difficult for me to accept that this is where I am headed, but it appears that for third parties, it is impossible. So, I'll wait.)

What I need to do, then, is halt the growth of the endometriosis before it gets far enough to cause uterine cancer, and put a stop to the cycle of inflammation so that I am no longer in daily pain for the first two weeks of every cycle. My life is not going to include children, but it includes a lot of other things, and none of those is improved by being in pain. Generally speaking, the way to halt - maybe even revert - the growth of the endometriosis is to stop one's menstrual cycle, since the upsurge in estrogen levels at the beginning of every cycle cause the endometrial adhesions (and the endometrial cysts - I would warrant I have several on my right ovary, since that area is frequently painful) to swell, causing an increase in the immune reaction that causes scar tissue to form on the internal organs. If I stop menstruating, I stop having estrogen spikes, the adhesions stop growing, and the scar tissue stops forming. With nothing to feed the adhesions, they may even shrink. Best of all, I wouldn't be in pain any more.

Obviously, I cannot be on depo forever (well...some people are, I gather), so I think I would talk to my doctor about doing six months or a year, then coming in for an ultrasound to see what's going on with the cysts. If it appears they have shrunk, I would maybe even consider doing another month or two of HCG; I understand that after knocking out your cycle, there is again a potentially "fertile window." That one might even be non-fictional in my case, in the sense that I might be both in the magic window and ovulating. Wouldn't that be nice. And as soon as the pain came back, I would go back on the depo; wash, rinse, repeat, until menopause, or the hysterectomy.

There are other inane things people say about this. One of which is that I shouldn't take depo (or should call it something else? It's high-dose progesterone, BTW), because it's a contraceptive. Hahahahahahahahahahahahahahahahahahahaha. Go ahead, take a look at my URL. See? Up there at the top of the page, in the address bar? I know, there are no spaces, it's hard to read. After the "http://" there's a four-letter word, then a five-letter word, then...you see? Yeah. So, that's what I have to say about me taking "contraceptives."

And for those who have hangups about giving money to the companies that manufacture contraceptives - do you know where your non-ART, super-holy, Catholic-approved drugs come from? What about the over-the-counter medicines you take? Where do you buy your jeans? What about your computer equipment? I took lupron before I was married because I didn't want to take depo shots because I would be giving money to those terrible people. Never mind that the exact same company probably makes both of them. I've never had such a bad reaction to anything ever. Surgery was pleasant by comparison. And I don't need the bone density loss, either. Plus, so far as I know, the sole perk of lupron (besides way more aggressive and harmful levels of hormone drug) is that it's not technically contraceptive - in a healthy person, it would probably prevent conception but not definitely. In the event of conception, however, it would certainly cause severe birth defects. If that seems morally superior to anyone, I recommend a course in basic bioethics. No, forget that - intro philosophy. Just start with logic.

Also, I don't want to hear about my diet. I eat some healthy food and some food that I enjoy although I know it is not healthy. If food makes me sick, I stop eating it. No doctor I have ever visited has suggested that I am allergic to gluten or dairy (or anything else), nor do I have any symptoms that suggest I am (endometriosis doesn't count until you can show me a peer-reviewed, published, duplicated, blind study - I believe they call that "science") and I am not taking medical advice from a non-doctor who has performed no tests on me nor even met me. I'd have to be an idiot - and, if you're taking medical and dietary advice from the internet, you are an idiot. That's not more judgmental than what people (and I mean specifically infertile people and usually Catholics, though there are others) say to me about my diet and health; it's just a whole lot more accurate.

So, moving on. I spend a lot of time concerned that I am guilty of immoderate rage. Things make me really angry on a regular basis. On the phone just now - for example - I was furious that the city utility bill site was incompetent and wouldn't read my address right. It was super-picky, but I had actually missed a digit of my seventy-digit account number, so it was my fault. The real problem is, though, that I was clearly exasperated when the woman picked up the phone, and I was short with her. I felt bad about this after I hung up; I tried to be nice and polite and thanked her after it got sorted out. But, of course, the reason I was so irritated when she answered was because I had then been on hold for over 15 minutes.

And ten minutes before that call, I opened a letter from my mortgage servicing company, telling me that the state refused to allow it to pay my property taxes out of escrow, saying that they were not due. The letter instructed me to call and inform the company if I had not separately paid the taxes, and it would track the problem down. So I called Wells Fargo. Menu #1 was stupid but it offered an option to do with mortgages. I chose that. I entered my loan number and the last four digits of my SSN. I got another menu. All options stupid again; one offered "property tax information." I chose that. It played me a recording that said no taxes had yet been paid and offered to let me listen to the menu again. (I am not omitting any relevant menu options from this narrative, and yes, I called the phone number in the letter.) I dialed zero repeatedly and eventually got a guy. I told him that I got the letter, and I hadn't paid the taxes myself. He asked me to confirm my name and I did. He then said that the mortgage servicing department could help me, and he would transfer me. At this point I informed him that I was not calling to seek his help, but offering mine; I was merely answering a question and I had now done so; I had already been through two sets of menus (following the number that I was directed to call!) and I had things to do today other than be on hold with the bank; and he could pass along the information I had provided, and I hoped he had a nice day. Then I hung up. I inspected the letter to see whether there was anywhere I could email this information. Since there wasn't, I decided to let it go. I may call the state property tax people; I haven't decided. As far as I am concerned they are all in the wrong, and they can jolly well sort it out.

After this I felt bad for being harsh, and pondered my immoderate rage again. And then I thought of something.

What if it isn't me?

Sure, I have an option, as a Christian, to take these small torments and offer them up as mortification. But in my view that is, in fact, an option. Offering them up wouldn't mean that they are just. They are not. It is my perception that I am increasingly surrounded by injustice, absurdity, and plain incompetence and stupidity on the part of many - almost all - of the people and entities with which I am constrained to deal. While I do not do my own job perfectly, I endeavor to be prompt, thorough, and accurate, and I encourage my clients to call me if they need any assistance. I answer my phone, messages (at work - I do not listen to voicemail messages on my own cell phone), and emails promptly. I also endeavor to behave logically; if, for example, I am informed that someone's address has changed, I understand that that applies to all places where I might use the address. I don't require seventy forms to effectuate the same address change.

Regrettably, I cannot say this about all the offices at the place where I work. And I cannot say this about almost any company with which I do business. If they can be reached by phone (which is rare), they will immediately inform you that you have contacted the wrong person and (despite their own representations about their phone system) you must call someone else and wait another twenty minutes. That person will require you to provide again every piece of information you have previously provided, to his colleagues and to his automated system, and he will be unable to understand the spelling of your name on the first three tries, and, ultimately, unable to help you. He will then suggest that you use a web-based system to which you do not have access, and in order to access which you will have to place yet another call for information. Partway through this exercise, it will occur to you that your life would be substantially improved by foregoing this service altogether so that you may avoid dealing with the intractably incompetent - even if that service is water, electricity, a home loan, or health insurance.

In short, what I'm saying is that the world is getting substantially worse, and the problem is not a loss of faith, war, famine, dairy, gluten, "global warming," or any of the other scourges we're taught to fear more than the fires of hell. It's customer service. Which I think is probably actually in hell; and, consequently, whether I'm right or wrong about the rage thing, I'm probably well-prepared for the next life.

13 comments:

  1. I know how you feel. I always feel guilty about losing my temper, but you know what? If you don't tell somebody that they're incompetent or that they're wrong or that they're hurting your feelings, they're never going to change! (And some people need to be told this repeatedly and with all possible emphasis!) The first step to fixing the problem is to point out that there IS a problem.

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  2. Yeah, I'm definitely not one of those people who is hopping on the "gluten-free-farm-raised-au-naturale" bandwagon and I avoid those posts because, well, they bug me.

    Here's something though. A bit over a year ago my doctor wanted me to take the birth control pill in order to shrink some pesky ovarian cysts that impeded my ability to take clomid (the miracle fertility drug!) So, I spoke to my (very smart and holy) priest about it because of my concern with monetary support of it. Of course, I hadn't really thought it through, and he said just as you did. That you're supporting the same companies with basically any prescription, so it's not really an issue.

    But then he said that we'd have to abstain while on it. He would know better than I, though I had been under the impression that since my intention was for my health rather than for contraception that we wouldn't have to abstain. (Of course, at the time, the notion that we'd conceive was ridiculous.) We ended up not taking it. Not because of the money or the abstaining, but just because I didn't feel like it was the right time and, moreover, I didn't think it good medicine for my issue. It worked out well for us though, because I actually would have been on the pill the month we did actually conceive, so...that was weird.

    But this brings me to my question: what's your take on abstaining while using contraception for medicinal reasons? There is probably a "Catholic response" to this somewhere, but I haven't looked into it and I like you. You're a thoughtful person.

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  3. Ugh...Wells Fargo! The utmost of incompetents. I notice at work constantly the absurdity certain businesses and customers want you to do. People are crazy and rude and it just gets worse!
    I think in the back of my mind, I knew Endo led to uterine cancer, but I was still shocked when I read that. It makes sense why you don't want to go through all the pain each month, plus have a cancer risk. Plus, having a period with no potential of kids just plain sucks.

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  4. I did various diet things for a long time. I felt great, but it had zero effect on my particular problem (the endless spotting/bleeding), which was mechanical in nature, so to speak. And people do those things to feel they may, just maybe, have some modicum of control over an out-of-control situation causing great suffering.

    You do what you need to be sane, and to find happiness and follow your faith. Everything else is just other people, not wanting to deal with suffering and injustice and shitty luck, and passing the emotional buck back to you via useless advice.

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  5. I so, SO hear you on the customer service thing! Every job I've ever had has been customer service related in one way or another, so I've had a lot of experience. And I'm almost always appalled at how terrible customer service is these days. I just keep thinking, I wouldn't be able to sleep at night if I provided such terrible service! When did this become the norm??

    Also, I love that you are focusing on healing and improving your quality of life. I know for me, all fertility aspects aside, it made a world of difference to eliminate (or at least drastically reduce) my endo pain. It was like I had my life back.

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  6. "your non-ART, super-holy, Catholic-approved drugs": tee hee. hahahahahaha!

    From the bottom of my heart, I hope and pray that you can get your endo pain under control so that you will be able to enjoy all of the good things in your life to the absolute fullest!!!

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  7. It never ceases to amaze me how freely people will throw around unsolicited advice. It makes me clench my jaw just to think about it.

    I hope this gets your endo under control. Even though you're 'only' 30, you shouldn't have to live with it until menopause. Like A said above me - you need to be able to enjoy the good things!

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  8. I don't have any advice (particularly since I'm one of "those" infertiles that subscribes to the crazy diets and embraces surgery, but trust me, the last two are definitely my LAST two).

    What I have learned from my IF journey is that we have to navigate through all of the stuff and find what is right for us. I pray that you find a way to control your endo and live a pain-free life.

    p.s. I have no tolerance for bad customer service. I worked customer service before I became a teacher and I thoroughly enjoyed it. Now when I get treated badly or unfairly I become the loudest complainer, and I've learned who to complain to. I do have to say that customer service in the US, at least in the stores, is far superior to ours here in Canada. You guys have us beat!

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  9. If I still had endo pain, there's no way we could have moved forward with adoption. It was ruining my quality of life. Heck, ruining my life, period!
    I will be the one obnoxious commenter and ask again if you've considered the natural progesterone cream? http://endo101.com/dose.htm has the dosage for treating endo and it reeeaaaally does help, I promise! My sis took it for the 3 months (I think?) they suggested, and she was pain-free for a whole 6 months. She's starting it again, and might do a longer regimen of a lower dose...not sure. And she wasn't even great at taking it consistently.
    The nice thing is, it's cheap - $26 for a tube that last about 3 months - and it doesn't require a prescription! Good things :).
    Alright, I'm totally shutting up now :). I would absolutely love for you to find a way to be pain-free without having to resort to the "big H".

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  10. I've been thinking about your post a lot - especially since I am supposed to be preparing for report cards (!) A few thoughts anyway:

    >So - please try to wrap your head around this; if you are infertile but have children, you might want >to accept that that's just too difficult and go read another post (and no, I would not take this tone >without a MOUNTAIN of evidence about people's inability to use their brains on this subject),

    I think somewhere there is a saying about the most zealous being the recently converted or something like that. It is really hard for someone living in IF-land, especially someone who has at last achieved "the dream" to accept an alternate solution. When my SIL and BIL did the tx they were comfortable with and ultimately decided to choose the child free (barring a miracle, which they would love) path ... it *was* hard for me to understand. That's why I ended up finding CFNBC blogs and trying to research a bit, what that decision means and how it is to live it out. I never doubted that they were making the right decision for them, though I am not sure it would have been the right decision for me. It sounds like you feel strongly about your future path, or at least you feel strongly about people trying to chirp away about "don't give up!!" I hope you find support for whatever choice you and your DH need to make, not gratuitous frustration from others.

    I do not oppose people taking birth control (one of the Catholic theology things I am not sure about) so I never thought about money going to support pharma companies that make that. But I rarely shop at Walmart and try to avoid things made in China, considering that when you make a purchase you are voting with your dollar. I never really thought of medicines being in this same category .... hmm ...

    My SIL took lupron as part of her endo tx (which included surgery - maybe a laparotomy - the one where they go in through the belly button and remove endo) - and she said it was brutal. She and her mom had one wing-ding of an argument, including one following the other around the house to vent about things that had been bugging the other for years. Whew! I think SIL has indicated that lupron is a last ditch consideration only.

    I also find that customer service is anything but, in too many cases. I'm sorry you are suffering such an enormous dose of incompetence in this arena. I think as everything gets more complicated, we get disconnected from the fact that we are people and the desire to help each other solve problems, instead just the necessity for a paycheque and to please shareholders so computerize as much as possible.

    >Also, I don't want to hear about my diet. I eat some healthy food and some food that I enjoy >although I know it is not healthy. If food makes me sick, I stop eating it. No doctor I have ever >visited has suggested that I am allergic to gluten or dairy (or anything else)

    I have no scientific evidence to offer, as I have not researched it. Anecdotally, my SIL cut out gluten and finds her quality of life much improved. (As in, she no longer collapses in agony on the floor of the supermarket if a particularly bad AF hits.) She never did get tested for Crohns as that would have meant going back on gluten, which she just couldn't imagine. Note that while it really helped her out, it has not resulted in a pgcy for DSIL and DBIL.

    I think part of the really irritating thing about dietary advice in general is that it is part of a Blame the Victim response. If you have this problem, you *must* be doing *something* wrong - otherwise it means that anyone could suffer randomly for no good reason. Quick, let's hunt up a reason so that we can comfortably settle back into Everything Is Explained and It Would Never Happen to Me.

    I guess if my comment never does show up, I will know it's because I used the g- word. Anyway I hope this week goes better (much less frustrating) for you.

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  11. I so agree with you about the diet stuff. And I'm also not someone who thinks surgery is always the answer either. After my surgery in Omaha I asked when the endo might return. I was told it would only possibly come back many years from that time, after I had children. Well, it was back a year later (probably sooner but that's when it became problematic and very painful), requiring another surgery (emergency, due to the size of the cyst). My point is I know from personal experience that nothing, and no one, is a miracle solution for everyone. I really hope you can find a way to control your pain.

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  12. Eliminating gluten did crap for me. No, scratch that. It didn't do crap. It was eliminating dairy that finally got me visiting the toilet on a regular basis.

    But all of this was based on SPECIFIC personal testing, the worst possible kind, to find out what I (as in ME, not someone else) was sensitive to. THE only thing was casein. But since my nutritionist (again, emphasis on MY) said gluten and casein are almost chemically identical, I decided to elimate both.

    I've never been an advocate of "do such-and-such because it worked for so-and-so!" mentality when it comes to infertility or anything else for that matter. I may talk about my own diet on my blog or in life, but certainly not to convince anyone to do exactly what I'm doing. So I hope it hasn't come across that way to you.

    I know the rage you speak of, and I know it well. I can't say I've experienced it quite the same way you have, because my blog commenters for the most part realize that there is quite literally NOTHING left for them to suggest me to try. So, in wishing me well in my childless living, really they're probably just in shock from the realization that I've already come to: I will never have children.

    I will say, I was telling a friend and ultrasound patient about how I had stopped trying actively, and she told me her sister (another patient) wanted to pass along "Don't give up!!" because she and her hubby had been TTC for 13 years. Oh, did I forget to mention that they have conceived twice or more in those 13 years, and, there are no reasons that I am aware of that would physically prevent them from adopting or fostering, if they were to feel called to pursue that. Royally ticked me off, I tell ya.


    Whatever you choose, I will be here. And yes, I am one of those few people who can understand that your decision to live the best life you can without children doesn't automatically mean infertility is a thing of the past and all of the pain and rage that once haunted you will suddenly melt away and you'll magically transform into the happiest woman on earth. Sadly, no. Instead, it means everyone else around you can pretend that you no longer care about being a mom, and they no longer need to pretend to care.

    Hugs :)

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  13. I understand. Especially the rage.

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