Friday, October 29, 2010

What Not to Watch

One evening when I was bored, I considered watching this on Netflix:
Has anyone seen this? I ended up watching something else and I'm glad I did. A friend has since told me it's quite scary and offers little in the way of hope for the chronically stressed. The title alone is enough to stress me out - Stress: Portrait of a Killer.

We all know that many health problems are caused or exacerbated by stress. According to this documentary, prolonged stress can "shrink our brains, add fat to our bellies, and even unravel our chromosomes". After nearly four years of extreme unrelenting stress, I don't even want to think about how badly my body has been damaged. Or how much my life has been shortened.

My vacation was quite relaxing and actually almost pain-free, which was fabulous. The insurance issue, though, has continued to be a major source of stress. I was unable to get any clear answers regarding what my new insurance covers. The benefits manager at my husband's work was likewise unable to get any straight answers. Finally today the clinic's financial coordinator called to say that she finally got a response from the insurance company. They will cover exactly nothing. Not ultrasounds. Not blood tests. Many insurances that don't cover infertility will at least cover that. But not mine. Figures.

I think keeping COBRA coverage under these conditions is legitimate, although I'm sure some would disagree. It's a grey area I plan to take advantage of because it's high time something works out in my favor. We have $1200 in infertility coverage left on that policy and I intend to milk it. I'm glad to finally have some answers, painful as they are, just in time to get the COBRA premium paid. Why do we always have to cut these things so damn close? [Speaking of cutting it close, don't forget to enter my contest (see last post). There are just three days left!]

This employer-based insurance system really doesn't make sense. Why should an employer dictate my insurer and coverage? Having the government do it would be worse still. I want to be able to compare insurers and plans. I'm smart enough to decide what makes sense for me and my family. So are you! Power to the people!!

Wednesday, October 20, 2010

100 Posts!

This is my 100th post! In celebration, I am having a contest - a matching game of the literary and cultural references in my blog. Yes, it's always high culture and fine whining here at Cradles and Graves!

Here's how it works:
  • Match the items in The List below to the post(s) referencing it - you can use the post title or date; you get one point for each match. Anyone can enter - you need not be a babyloss/infertility gal. Lucky you if you're not.
  • This is intended to be EASY. Almost all of the answers are in the post titles, so just look at the archive list. The few that aren't there can easily be found using the handy "Search This Blog" feature on my sidebar.
  • Email me your answers on or before November 1; DON'T put your answers in the comments section below - that is just helping the competition! My email is cradlesandgraves at yahoo dot com. [Update: As of October 28, the top score is 24.]
  • Items with a * have multiple references, so there are bonus points available! There are also a few pictures on the blog that match up to items on the list. Bonus points for that, too!

  • One winner will be chosen randomly, so you win even if you only find one match! That prize is a $10 Great Harvest gift card and a jar of pomegranate jelly (pomegranates are a symbol of fertility).
  • The person who has the most points by the deadline wins the prize shown below. If it's a tie then the prize goes to the person who got the score first. It's fine to send multiple emails - send them whenever you find matches and I'll keep a tally of your total.
  • Because infertility / babyloss can kill the laughter and romance in a relationship (don't I know it!) the prize is intended to help you get a little of it back. The person with the most points wins a $25 Vicoria's Secret gift card, comedian Brian Regan's DVD The Epitome of Hyperbole, and some snacks to eat while you watch it with your significant other. If a winner lives in an area where they can't use the gift cards (overseas or in the middle of nowhere), then we will figure out a comparable prize.
  • Questions or comments? Leave them in the comments section below.
The List
  1. AC/DC
  2. Tori Amos (*)
  3. Lance Armstrong
  4. Jane Austen
  5. George W. Bush
  6. Charles Darwin
  7. Charles Dickens
  8. Dire Straights
  9. INXS
  10. The Lone Ranger
  11. Matchbox 20
  12. My Fair Lady
  13. Sir Walter Scott
  14. William Shakespeare's Julius Caesar
  15. The Simpsons (*)
  16. Dr. Suess
  17. Toad the Wet Sprocket
  18. Wicked
  19. Winnie the Pooh (*)
  20. The Wizard of Oz (*)
  21. A prophet from the Bible
  22. Book about pregnancy by Heidi Murkoff
  23. Movie from 1997 - A single mother/waitress, a misanthropic author, and a gay artist form an unlikely friendship
  24. Movie from 1999 - A comedy about a psychiatrist whose number one patient is an insecure mob boss
Thanks also to everyone who has read and commented on my blog. Loss and infertility has been so difficult and isolating. It really means a lot to "meet" so many wonderful people who are going through similar struggles. I also appreciate my "real life" friends who aren't going through similar struggles, but who come along on my journey through my blog.

A big thank you also goes to Q, my hubby, for being so wonderful even as we've been through such horrors together in the last few years. He has never posted on this blog but he helps by finding pictures for it, which explains why there are pictures of girl fights and scantily clad women. Also, it was his idea to have the Victoria's Secret gift card as a prize.

Monday, October 18, 2010

Money For Nothing

Today I was hoping to write a happy post (we sure need one around here!) about our new insurance that kicks in on November 1. Before Q took his new job, we asked about the infertility coverage and were told that there is $5000 for medical. They refused to tell us if there was also coverage for drugs until we got a member ID#, but we were hopeful there would be some $ there as well.

The new insurance cards arrived today. I immediately got on the phone to see if there is any drug coverage. I have most of the drugs for next cycle, but still need more Follistim and Menopur. Can't get anywhere without those. Since I'm supposed to start those drugs on November 5, I was hoping I'd have some insurance coverage as of November 1 to help finance it.

As you know if you follow this blog, things are never easy around here. Not only is there no drug coverage, there is also NO INFERTILITY COVERAGE. None at all. Not even for blood work and monitoring ultrasounds. This is according to the representative at the insurance company. I, of course, am forbidden from seeing the actual policy myself until November 1. This really throws a wrench in our plans. Can we even go through with this cycle? We can't be throwing thousands more into this!

All the actual IVF is already paid for out-of-pocket, leaving our pockets pretty empty. It's the monitoring, bloodwork, drugs, and consults that are at issue. Our current COBRA policy has maybe $1000 left for infertility but the drug coverage is exhausted. It does cover the monitoring and blood work without a limit. So I looked into whether we could keep that policy beyond when Q becomes eligible for crappy coverage at his new job. Here's the scoop from COBRA's website:

If you start a new job and enroll in their group health plan, you can still qualify for COBRA if your new plan imposes limits, exclusions, or waiting periods on your coverage.

Well, it imposes an exclusion on coverage for my medical condition, infertility. So does that mean I can/should keep the COBRA? Or would I end up in jail or something? After all, infertility isn't a real health problem (please sense the sarcasm here). It's just an inconvenience. It's just a lifestyle issue. I know I often think so when I'm so depressed I wonder how I can go on. Or when I'm sobbing on the floor because of endometriosis pain, which can be put into remission by having a baby.

That "just relax" thing? Still not working out so well. It was all I could do to remain civil while getting the run-around on the phone with the insurance company today. It doesn't help that I already had a visceral hatred toward this particular insurance company. I used to do medical billing and everyone in the office hated this company because they are always finding ways not to pay claims. And now they're going to be my insurance company. [Bad word.] [Very bad word.]

I have two days to sort this out, because then we are off to exotic Illinois and I really don't want to take this worry on vacation with me. I've got plenty of baggage already, including that beastly endometrioma that makes it feel like I'm being stabbed repeatedly in the ovary. Also, it KILLS when I sit still for more than an hour. And we're driving to Illinois.

This blog noir phase is dragging on and on and on, isn't it? The next post will be #100. I promise it will be a happier one!

Friday, October 15, 2010

Just Relax?

With just over a week left until I start Lupron in preparation for IVF #2, I have been attempting to "just relax".  It's proving very difficult.  It seems that every time one stessor is removed or lessened, another stressor takes its place, often adding even more stress than before.

After the first IVF failed, I met with a perinatologist who will let me try Lovenox from transfer and she has me taking lots of supplements.  Also, I will start at much higher stim doses next time around, so I was encouraged that the next cycle could go better.  Stress level - down a little. Then of course it went way up with the endometrioma discovery.  WHY does it always have to be one step forward and two steps back?

Then yesterday I found out that my youngest brother is hospitalized indefinitely.  Suddenly my problems seem pretty small.  Or at least less likely to kill me.  Soooo . . . I'm trying to just relax.  I managed to have some fun in the kitchen with my kids.  Here's what we made:

Wednesday, October 13, 2010

Hughes Syndrome

The search for an explanation of my losses and other pregnancy problems has always led to two theories: 1) a blood clotting disorder or 2) a genetic issue. The genetics theory is discussed here.

Since my recent visit with the perinatologist, I've been wondering more about the clotting theory. As I posted previously, there are some clues that this might be the case but my lab test results don't fit neatly into the diagnostic criteria. To get an official diagnosis one has to exhibit certain symptoms AND have conclusive positive lab tests. Here are the symptoms of the clotting disorder Hughes Syndrome (a.k.a. antiphospholipid antibody syndrome) and whether I have them:
Blood Clots that cause "young" stroke or heart attack (under age 45), pulmonary embolism (clot in lung), or deep vein thrombosis (usually in the leg).

I've had none of these (yay!). There's no family history of this either. The only clot problem I've ever had was a *blush* debilitating thrombosed hemorrhoid following my first child's birth. According to my doctors, this clot does not count. I can tell you, though, that the indignity of stirrups is nothing compared to the humiliation of butt surgery done under only local anesthesia.  Moving on . . .

Pregnancy problems -
Intra-uterine growth resriction (IUGR) - Yes, my first child had this
Placental abruption - Partial abruption was suspected during labor with my second child, but it was never confirmed
Miscarriage, particularly in mid-pregnancy - A big YES on that one
Pre-eclampsia - No
Infertility - yes

Memory loss - My memory has not been great in recent years, but it's improved since this. I've always attributed it to trauma, inadequate sleep, anxiety, and all the drugs I've been on. My kids never let me forget that I'm "not a good rememberer"!

Headaches, especially migraines - I've never been one to get a lot of bad headaches but lately I've noticed subtle headaches practically every day. They rarely interfere with my normal activities. I suspect (and hope!) they're caused by stress, anxiety, etc and not by tiny blood clots in my brain!

Cold skin - I seem to have poor circulation in my hands and feet compared with most people. I've noticed my feet sometimes turn purple (but aren't uncomfortable) when I stand in one position for 15 minutes or so. Also my hands are like ice all winter even if I'm indoors all day. I noticed this long before I ever tried having babies, but I never thought for a moment that having icy hands could be a harbinger of doom!

Purple-blue discoloration of the skin, particularly around the knees and elbows - I've noticed this around my knees sometimes after showering.

Shortly after my losses I mentioned these supposed signs to my doctor and he dismissed them as "grasping at straws". As a result, I haven't brought it up again with subsequent doctors, but maybe there is something significant here after all.

Other than the pregnancy issues, most of the symptoms I have could easily be dismissed as subtle or subjective. I mean, everyone gets headaches. Everyone forgets things. Everyone gets cold, especially here in Minnesota! How do you know when you're outside the normal zone?

If thrombophilia (too much clotting) IS my problem, then there may be hope for me assuming I can ever actually get pregnant. According to several studies, Hughes Syndrome patients' odds of successful pregnancy are about 20% without treatment.  My success rate thus far is 40% - lucky me!  With aspirin and heparin treatment it goes up to about 80%. I'd love to give heparin a shot! Now if I could just get pregnant . . .

Monday, October 11, 2010

Tired of Holding My Head Up

The recent bad news about my endometrioma has seemed like the last straw.  I try to keep holding my head up and pretending that everything is fine, though I feel like I'm about to collapse under the weight of all the accumulated bad luck and rotten news.

Q (my hubby) and I needed a little break from it all, so on Saturday we went out on an actual date!  This does not happen very often.  In fact, the last time I remember going out together for the evening was when we went to an IVF seminar.  All that talk about taking a giant needle in the ovary sure got me in a romantic mood.  My mom called in the middle of it - "Oooh, are you guys out on a date?" "Um, yeah." 

So it was high time for a real date.  We went to see our favorite comedian, Brian Regan.  I thought I'd die laughing, but no such luck.  Ok, so that's not funny.  If you want funny then check out the Brian Regan clips at the bottom of my sidebar. 

Also, here's a little comedy from Margaret Smith.  Sorry, couldn't find a video of it, but you can just listen while you browse around the internet.  There are bits about depression, adoption, and therapy . . . that's comedy gold right there!

Friday, October 8, 2010

The Endometriosis Diet

Soon after I was diagnosed with endometriosis, I found information about a diet that's supposed to help with the condition. I printed out a cookbook full of endo-diet compliant recipes. Here are the diet No-No's:

Wheat and Rye
Meat (except chicken and some fish)
Sugar and pretty much every other sweetener
Coffee, Tea, Alcohol
Vegetable Oil
Most canned and frozen foods

That covers most of the food pyramid! So what is allowed, you ask? This is a short list:

Seeds and nuts
Fruits and vegetables (organic!)
Chicken (organic!) and some fish
Grains other than wheat and rye

Imagine dining day after day on such gastronomical delights as mung bean salad, yam pie, and lentil pate . . . this is the stuff of nightmares! In addition to being a life-threateningly boring diet, it is uneconomical and labor intensive. Also, I can find no solid evidence that it would help at all.

After looking through the cookbook, I realized that this diet is the most effective means of endometriosis management I've seen so far. I knew this diet would end my endo pain for good. How? By being so restrictive that I'd soon starve to death and never again be troubled by endo - or anything else!

Finally Feeling Fabulous!

I'm still alive, so obviously I didn't try the diet. I try to eat well (organic produce within reason, little red meat, limited sugar, no caffeine or alcohol, rBGH-free dairy products, etc.) but a girl's gotta have some chocolate on a rough day! Also I just don't believe dairy, eggs, and wheat are bad. Other than that, my responsible and diverse diet actually goes along with a lot of what the endo-diet recommends. I just don't take it to ridiculous extremes because it seems that strictly adhering to this diet would inflict more misery than it could possibly relieve. If you have endo and have discovered that such a diet really works, do let me know. In the meantime, I shall be enjoying some mint chocolate chip ice cream.

Monday, October 4, 2010

The Devil Inside

The year that Jeremiah and Miles died, 2007, I felt like I'd been run over by a truck.  For the last few years I feel like I'm getting whacked in the head repeatedly with a 2 x 4.  I get hit by bad news followed by more bad news followed by even more bad news.  It's better than being hit by a truck, but can't I get a break? 

Last Friday was my ultrasound to check the status of my evil twin cysts.  I went into it knowing I probably would not get great news (I've had a lot of pain the last few days - that's a bad sign) but I didn't expect to get hit with horrible news either.  That's what I got though, and I'm still reeling from the blow.

One cyst is resolving and is now 1.5 cm compared to 3.5 cm three weeks ago.  OK that part's good, but wait for it . . . The other diabolical cyst remains 3.5 cm and my doctor thinks it is an endometrioma.  If so, then the only way to get rid of it is surgery, which she strongly discourages.  She recommends proceeding with IVF anyway and she will try to work around it.  The cyst is likely to have a negative effect on follicle production.  I only got 6 mature eggs with my recent cyst-free IVF and just two embryos made it to transfer.  I don't feel very hopeful about my prospects with yet another handicap on top of all my other crippling handicaps.

Regardless of whether I proceed with IVF or not, one thing is certain - I will continue to face a lot of pain in my future.  What can I do but plow ahead as long as there's any hope of obtaining great joy to go along with that pain?  So I'm off The Pill for a few days and then will start back up and head into another long Lupron IVF cycle.  IF this all goes off according to plan [laughs bitterly] then stimulation meds would begin in early November, with retrieval right around my 35th birthday.