I spent the past several days waiting for my pain doctor to call me back. I left a message every business day for 4 days and somehow (<cough> bad nurse) they kept getting ignored . Yesterday I finally received a call back from my doctor—hallelujah—and I wanted to share with you some tactics that did and didn't work. Not surprisingly, the pain clinic operates similarly to the RE's—wish I'd figured that out earlier.
When you need your doctor to call you:
1. Staring at your phone does not make it ring. I've practiced this technique long enough to know with certainty that it doesn't work. Some people learned this in high school, but apparently I was not one of them.
2. Thinking about the phone sometimes makes it ring. True story: one day when I was driving home from work, I wondered when my RE would call and she called that very minute. WEIRD. The trick to making this work is thinking constantly about when they'll call; your obsessing and their calling back are bound to coincide eventually.
3. If your cell does not get reception in your house, you're screwed. My husband and I are about 10 years behind in cell phone technology. We use prepaid plans and I don't have a smartphone, and our phones are primarily for emergencies. I felt all superior about this in a hippie, "I'm so present and in the moment that I don't need technology" kind of way until all this pain shit hit the fan. It turns out that giving out three phone numbers can confuse health care professionals and result in your missing their calls. Before you miss their calls, you will wander around your house trying to find the place with the most bars, leaving your phone in that place, and racing to it when it rings.
4. Call early in the day. Messages stop being retrieved at 3 pm and even earlier on Fridays in my clinics. Learned this one the hard way when I left a message at 3:02 on a Thursday. Turned out my doc didn't work on Fridays, so it was a long wait for a return call.
5. When all else fails, page the doctor on call. But don't expect to get connected on the first try. You might have many setbacks before you speak to a doctor, including the hospital operator hanging up on you, the doctor not answering the page, or the wrong doctor being paged (I don't need to speak to an ophthamologist now—probably one of the few specialists I have no questions for). Paging the doctor on call is your ace in the hole. Don't overuse it.
After 4 business days of leaving messages and staring at the phone, plus a weekend of pain and sulking because I knew I wouldn't get a call then, my doctor finally called back and adjusted my meds. It took paging the resident on call and asking him if there was anything else I could be doing to get a call back. I'm so done with the pain clinic.
Update: the triage nurse left me a nasty voicemail this morning. Sounds like she was reamed out by the doctor so she called to "apologize," which consisted of her telling me that I must have done something wrong when I left the messages and/or lied about how many times I've called. She checks her messages frequently and always follows up that day. Riiiiight.
birds
Thursday, June 28, 2012
Saturday, June 23, 2012
Dear Body: We Need to Talk
Hey girl. I know you're having some rough times. Let's talk about what's going on.
You're upset, understandably, from repeated assaults by surgery and endo. I am partly to blame, but we need to come to an understanding about how to work things out.
I've taken pretty decent care of you over the years. I'm sorry about the binge drinking in college—that wasn't cool. But I cleaned up my act pretty nicely and turned into a half marathoner and triathlete, and I appreciate your allowing me to do these. We worked well together and I think I should get some credit for pursuing such healthy hobbies.
Tendinitis helped me realize that I needed to take care of you a little differently than before, with a little less impact, and I switched to yoga. You thanked me and we had a nice routine going on for a while there.
Let's talk about food. I was a vegetarian for 13 years, and going back to meat hasn't changed my overall outlook on food. I believe in breakfast, lunch, dinner, and two snacks, and I think you'd agree we have a good thing going. No issues there, right? Lots of fruits and veggies?
Good. That brings me to my key complaint. You're probably thinking it's going to be infertility. Good guess, but something else is bothering me even more than that. So let's set infertility aside for the moment and talk about pain.
I'm certain that some of my choices have led us to this impasse. First, I let endo have its way for a while because I didn't believe in the Pill. Mistake. I realize now that I should have stayed on the Pill up to the month we wanted to get pregnant, but I didn't know that then. I'm sorry.
I tried to fix the endo situation by having the laparoscopy last year. My intentions were pure, but I'm pretty sure you hated the surgery even more than you hated the endo. I had no idea you'd react that way to laparoscopic surgery. I've never heard of someone taking 3 months to recover, so I'm not sure how I would have anticipated that.
Then I got greedy. I tried again to get pregnant. And I didn't just try, I used letrozole. It worked, and we were pregnant again. And then we weren't. Not to be flip, but...you sure showed me. You showed me that it was a sign of hubris to try for a biological child again after I knew a uterine septum was present. Maybe that was the cause of the miscarriage or maybe it wasn't, but I feel dumb for not getting more opinions about the septum. Dumb and completely, totally heartbroken.
Your downfall was really in full swing by that point. A few months after having the contents of my uterus sucked out again, we brought out the hardware again. I had my doctor trim back my septum and some scar tissue and remove a polyp. And you hated it.
I don't think you've ever felt the same after that surgery in December. I'm thankful to blogging in that it provides a record of just how badly I was doing in January and February. I made a lot of excuses for why I didn't feel great, letrozole this and post-op recovery that, but in retrospect you were sending me signals, loud and clear.
I'm sorry for going back in for surgery in March. I'm sorry for agreeing to the uterine balloon. I don't know why I wasn't getting your signals. On second thought, I do know. I said I wouldn't drag infertility into this discussion, but I'm going to for a second. I'm really, really angry at you for not giving me a child. I know it's not my due, I don't deserve a baby more than anyone else, and infertility is just one of those unlucky conditions. But I did all these interventions, each surgery and procedure, for the chance of having a child. I can see now how much I was risking in terms of your health, but I couldn't give up. I still kinda hate you for not following through on what we're born to do—reproduce.
So I got the balloon and then received your response to it. Yeah. Got it. And I'm still getting it. You're sick and fucking tired of it all. We're in this position because of choices I made, because I had some dream that I was willing to risk everything for.
I get that I went too far, but we need to reach a level of understanding. I can't give you more of the things you need in my current condition. I can't exercise, cook for myself, or sleep well. My cortisol levels must be through the roof when the pain is flaring. I can give you some of the healthy things you need if you back off.
How about I promise to really consider your needs when I make decisions about a possible baby in the future? I can't promise that I won't try again. I'm sorry. But you've reminded me how critically important it is to keep you working and functional, and above all, healthy. I won't forget it.
So please consider backing down. Message received; I made some poor decisions. I was doing my best with the information I had at the time, but I could have paid more attention to your needs. Now that the damage is done, literally, we need to find a way to coexist and hopefully get along. Truce?
Love,
D
You're upset, understandably, from repeated assaults by surgery and endo. I am partly to blame, but we need to come to an understanding about how to work things out.
I've taken pretty decent care of you over the years. I'm sorry about the binge drinking in college—that wasn't cool. But I cleaned up my act pretty nicely and turned into a half marathoner and triathlete, and I appreciate your allowing me to do these. We worked well together and I think I should get some credit for pursuing such healthy hobbies.
Tendinitis helped me realize that I needed to take care of you a little differently than before, with a little less impact, and I switched to yoga. You thanked me and we had a nice routine going on for a while there.
Let's talk about food. I was a vegetarian for 13 years, and going back to meat hasn't changed my overall outlook on food. I believe in breakfast, lunch, dinner, and two snacks, and I think you'd agree we have a good thing going. No issues there, right? Lots of fruits and veggies?
Good. That brings me to my key complaint. You're probably thinking it's going to be infertility. Good guess, but something else is bothering me even more than that. So let's set infertility aside for the moment and talk about pain.
I'm certain that some of my choices have led us to this impasse. First, I let endo have its way for a while because I didn't believe in the Pill. Mistake. I realize now that I should have stayed on the Pill up to the month we wanted to get pregnant, but I didn't know that then. I'm sorry.
I tried to fix the endo situation by having the laparoscopy last year. My intentions were pure, but I'm pretty sure you hated the surgery even more than you hated the endo. I had no idea you'd react that way to laparoscopic surgery. I've never heard of someone taking 3 months to recover, so I'm not sure how I would have anticipated that.
Then I got greedy. I tried again to get pregnant. And I didn't just try, I used letrozole. It worked, and we were pregnant again. And then we weren't. Not to be flip, but...you sure showed me. You showed me that it was a sign of hubris to try for a biological child again after I knew a uterine septum was present. Maybe that was the cause of the miscarriage or maybe it wasn't, but I feel dumb for not getting more opinions about the septum. Dumb and completely, totally heartbroken.
Your downfall was really in full swing by that point. A few months after having the contents of my uterus sucked out again, we brought out the hardware again. I had my doctor trim back my septum and some scar tissue and remove a polyp. And you hated it.
I don't think you've ever felt the same after that surgery in December. I'm thankful to blogging in that it provides a record of just how badly I was doing in January and February. I made a lot of excuses for why I didn't feel great, letrozole this and post-op recovery that, but in retrospect you were sending me signals, loud and clear.
I'm sorry for going back in for surgery in March. I'm sorry for agreeing to the uterine balloon. I don't know why I wasn't getting your signals. On second thought, I do know. I said I wouldn't drag infertility into this discussion, but I'm going to for a second. I'm really, really angry at you for not giving me a child. I know it's not my due, I don't deserve a baby more than anyone else, and infertility is just one of those unlucky conditions. But I did all these interventions, each surgery and procedure, for the chance of having a child. I can see now how much I was risking in terms of your health, but I couldn't give up. I still kinda hate you for not following through on what we're born to do—reproduce.
So I got the balloon and then received your response to it. Yeah. Got it. And I'm still getting it. You're sick and fucking tired of it all. We're in this position because of choices I made, because I had some dream that I was willing to risk everything for.
I get that I went too far, but we need to reach a level of understanding. I can't give you more of the things you need in my current condition. I can't exercise, cook for myself, or sleep well. My cortisol levels must be through the roof when the pain is flaring. I can give you some of the healthy things you need if you back off.
How about I promise to really consider your needs when I make decisions about a possible baby in the future? I can't promise that I won't try again. I'm sorry. But you've reminded me how critically important it is to keep you working and functional, and above all, healthy. I won't forget it.
So please consider backing down. Message received; I made some poor decisions. I was doing my best with the information I had at the time, but I could have paid more attention to your needs. Now that the damage is done, literally, we need to find a way to coexist and hopefully get along. Truce?
Love,
D
Friday, June 22, 2012
ICLW, Fourth Opinions, and Flowers
Hi ICLWers! Welcome to my blog and thanks for visiting. I'm 35, 3 years into TTC, 2 early miscarriages, and currently recovering from a uterine surgery. Apparently I suck at recovering because I've been in nonstop pain for the past 3 months.
Because I like showing off my flowers, here's a pic of one of my hydrangeas.
My work trip sucked the life out of me yesterday. Woke up at 3 a.m. to catch my flight, and came home at 3 p.m. and crashed. Slept for 11 hours and it felt like heaven. But I still don't feel right.
Predictably, my pain is horrible today. I knew that walking around airports was bound to do me in, with all the stress walking is apparently putting on my stupid recovering pelvic floor muscles. Feeling so hopeless about ever recovering. What the hell am I doing wrong? I do my PT religiously, I take the pain meds, I rest like crazy...
I need to call the new clinic where I'll seek a fourth opinion, but I am loathe to make any more doctor's appointments. Loathe. I do not want to start off in a new medical system, go through all of their screening interviews, paperwork, and office visits, just to end up in the same place. I'm convinced the new clinic won't be able to help.
At the same time, I know I desperately need a main provider who will coordinate my care. Everyone (ie, my RE and I) thought my pain doc would be my core doc during this, but she's obviously not up to the role. I think she's competent enough—not pelvic-specialized but still capable—but she does not seem to want to monitor me as much as I need. She keeps setting my follow-ups every 6 weeks, when I know (and apparently am not communicating) that I need to see someone at least every 3 or 4 weeks. I'm not sure what's going on, if I'm supposed to keep calling her to follow up sooner, or if she genuinely doesn't understand how badly I'm doing. Major communication gap.
Update: That was easy. Called the fourth opinion clinic and they already have me set up for an appointment. They've mailed me the notification. Ok, people. Would have been nice to know by phone, but whatever. The appt is 7/23, which is sooner than I expected to get in.
*****
When my parents were visiting last week, my mom said that my great aunt had a premonition about when we'd have a baby <cue eye roll>. She had a feeling we'd have a baby in August, and since this August is definitely out, it could be next August. I told my mom that I don't buy into premonitions, hunches, or intuits about our future baby, and remember how my mom had had a feeling that we'd have a baby by Christmas? That is, Christmas 2010? And that I'd had a strong feeling I was pregnant about 569 times since we started trying, and I was wrong 567 of those times? Stupid hunches. They've gotten me nowhere.
*****
To end, here are some more flowers. Thanks for stopping by, and I'm looking forward to reading more of your blogs!
Because I like showing off my flowers, here's a pic of one of my hydrangeas.
 |
| Lace cap hydrangea (I think) |
My work trip sucked the life out of me yesterday. Woke up at 3 a.m. to catch my flight, and came home at 3 p.m. and crashed. Slept for 11 hours and it felt like heaven. But I still don't feel right.
Predictably, my pain is horrible today. I knew that walking around airports was bound to do me in, with all the stress walking is apparently putting on my stupid recovering pelvic floor muscles. Feeling so hopeless about ever recovering. What the hell am I doing wrong? I do my PT religiously, I take the pain meds, I rest like crazy...
I need to call the new clinic where I'll seek a fourth opinion, but I am loathe to make any more doctor's appointments. Loathe. I do not want to start off in a new medical system, go through all of their screening interviews, paperwork, and office visits, just to end up in the same place. I'm convinced the new clinic won't be able to help.
At the same time, I know I desperately need a main provider who will coordinate my care. Everyone (ie, my RE and I) thought my pain doc would be my core doc during this, but she's obviously not up to the role. I think she's competent enough—not pelvic-specialized but still capable—but she does not seem to want to monitor me as much as I need. She keeps setting my follow-ups every 6 weeks, when I know (and apparently am not communicating) that I need to see someone at least every 3 or 4 weeks. I'm not sure what's going on, if I'm supposed to keep calling her to follow up sooner, or if she genuinely doesn't understand how badly I'm doing. Major communication gap.
Update: That was easy. Called the fourth opinion clinic and they already have me set up for an appointment. They've mailed me the notification. Ok, people. Would have been nice to know by phone, but whatever. The appt is 7/23, which is sooner than I expected to get in.
*****
When my parents were visiting last week, my mom said that my great aunt had a premonition about when we'd have a baby <cue eye roll>. She had a feeling we'd have a baby in August, and since this August is definitely out, it could be next August. I told my mom that I don't buy into premonitions, hunches, or intuits about our future baby, and remember how my mom had had a feeling that we'd have a baby by Christmas? That is, Christmas 2010? And that I'd had a strong feeling I was pregnant about 569 times since we started trying, and I was wrong 567 of those times? Stupid hunches. They've gotten me nowhere.
*****
To end, here are some more flowers. Thanks for stopping by, and I'm looking forward to reading more of your blogs!
 |
| Gardenia |
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| Hydrangea (the more standard kind) |
Wednesday, June 20, 2012
First It's a Room, Now It's a Clock
As if the vagina room analogy wasn't enough embarrassment, my PT informed me today that my vagina is also a clock. Wonderful.
Both analogies are my abbreviated way of saying that we've figured out that some of my pain issues are associated with pelvic floor muscles. Not a shocker, but at least we're making progress. My PT isn't sure why I'm also having upper abdominal pain, so we're treating that as a separate issue.
The pain doc switched me from Neurontin (gabapentin) to Lyrica, and I can't tell if it's helping at all. What it is doing is making me incredibly sleepy. My max coffee dose per day is usually one cup and then the jitters set in, and now I'm up to four cups and still feel like I could take a nap.
Dr. Third Opinion helped us zero in on specific pelvic floor muscles, and he reiterated the pain doc's pronouncement that PT is where it's at. He gave me yet another medication, a muscle relaxant, which I think is helping. Maybe.
Pain doc has referred me to another clinic (YAY! More appointments! More copays! More internal exams!), where I'll get a fourth opinion. The main reason she wants me to go there is to get a more integrated treatment plan. She thinks the doctors and PTs work more closely there, and the clinic itself specializes in pelvic pain. The clinic is part of a different health system, so getting my extensive medical records transferred over will be interesting.
Some of you have asked if I've tried certain treatment modalities, and it seems like a good time to list the ones I've tried. Here goes. The ones I'm currently using are underlined.
My parents just left our house. They'd stayed for a week, and today is my first day back at work. We mostly hung out on our back deck and watched baby birdies. The baby cardinals and baby bluebirds have left their nests, but two mommy house finches are sitting on nests on our front porch. Busy birdies! I'll get some more photos up soon.
Looking forward to ICLW! Am not looking forward to waking up at 3:30 tomorrow morning for my work trip.
Both analogies are my abbreviated way of saying that we've figured out that some of my pain issues are associated with pelvic floor muscles. Not a shocker, but at least we're making progress. My PT isn't sure why I'm also having upper abdominal pain, so we're treating that as a separate issue.
The pain doc switched me from Neurontin (gabapentin) to Lyrica, and I can't tell if it's helping at all. What it is doing is making me incredibly sleepy. My max coffee dose per day is usually one cup and then the jitters set in, and now I'm up to four cups and still feel like I could take a nap.
Dr. Third Opinion helped us zero in on specific pelvic floor muscles, and he reiterated the pain doc's pronouncement that PT is where it's at. He gave me yet another medication, a muscle relaxant, which I think is helping. Maybe.
Pain doc has referred me to another clinic (YAY! More appointments! More copays! More internal exams!), where I'll get a fourth opinion. The main reason she wants me to go there is to get a more integrated treatment plan. She thinks the doctors and PTs work more closely there, and the clinic itself specializes in pelvic pain. The clinic is part of a different health system, so getting my extensive medical records transferred over will be interesting.
Some of you have asked if I've tried certain treatment modalities, and it seems like a good time to list the ones I've tried. Here goes. The ones I'm currently using are underlined.
- Medications
- Lyrica
- Neurontin (helped but not enough)
- tramadol
- muscle relaxants
- NSAIDs (didn't seem to help)
- narcotics (only help in the short term; not a good long-term strategy)
- the Pill (epic fail; cried constantly when I was having a pain flare)
- Supplements
- pycnogenol (recommended by an acupuncturist to help relieve uterine cramping; super expensive but is maybe helping)
- Alternative therapies
- abdominal massage (helps a good deal; go once a month)
- acupuncture (effective during the session but not afterward; stopped going)
- meditation, including mindfulness, guided imagery, and affirmations (hasn't been effective for pain relief; I'm a fan in general, but am not able to stay awake during it because of the meds I'm taking)
- Movement (or lack thereof)
- PT, including stretching, strength training, ice, and heat (seems to be helping)
- not moving, aka lying down
- walking (generally makes the pain much worse; struggling to find the right balance)
- Other
- living my life, including working, etc
- distraction, including but not limited to reading, watching TV, talking to friends, etc
My parents just left our house. They'd stayed for a week, and today is my first day back at work. We mostly hung out on our back deck and watched baby birdies. The baby cardinals and baby bluebirds have left their nests, but two mommy house finches are sitting on nests on our front porch. Busy birdies! I'll get some more photos up soon.
Looking forward to ICLW! Am not looking forward to waking up at 3:30 tomorrow morning for my work trip.
Tuesday, June 19, 2012
Awkward Analogies with Dr. Third Opinion
I'll give you the deets later for my appointment with Dr. Third Opinion, but for now, here's a list of Things I Wish My Doctors Hadn't Said. I'll start with Dr. Third Opinion's classic:
1. Imagine that this room is your vagina. Could you come up with an analogy that doesn't have us standing in my vagina? It caught me so off guard that I couldn't remember which wall was my cervix.
2. This exam will make you feel like you're peeing on the table. Said to me before an abdominal CT scan. At least they warned me.
3. Is there any chance you could be pregnant? This one is especially good when asked right before a D&C. Um, yes, but with a dead baby?
4. We don't know what's wrong with you. Variations include "None of our patients have this much pain after surgery" and "I'd be happy to refer you to one of my colleagues." Sometimes, this is followed by #5.
5. One option is for you to go to the ER tonight. This one made me transition from mildly concerned to freaking the f*** out.
6. We need to do surgery to see how messed up you are inside. Listen, buddy. Infertility has screwed with my body image enough without you adding "messed up" to my negative self-talk. The doctor who said this a while back wanted to get my laparoscopy business. He didn't get it.
****
A short update: Pain sucks, but family visits mean that my food supply is solid. I have a work trip on Thursday and I have to get up at 3 a.m. for my flight. It is going to be a very rough day. Will my coworker need to push me in a wheelchair through the airport? Stay tuned.
1. Imagine that this room is your vagina. Could you come up with an analogy that doesn't have us standing in my vagina? It caught me so off guard that I couldn't remember which wall was my cervix.
2. This exam will make you feel like you're peeing on the table. Said to me before an abdominal CT scan. At least they warned me.
3. Is there any chance you could be pregnant? This one is especially good when asked right before a D&C. Um, yes, but with a dead baby?
4. We don't know what's wrong with you. Variations include "None of our patients have this much pain after surgery" and "I'd be happy to refer you to one of my colleagues." Sometimes, this is followed by #5.
5. One option is for you to go to the ER tonight. This one made me transition from mildly concerned to freaking the f*** out.
6. We need to do surgery to see how messed up you are inside. Listen, buddy. Infertility has screwed with my body image enough without you adding "messed up" to my negative self-talk. The doctor who said this a while back wanted to get my laparoscopy business. He didn't get it.
****
A short update: Pain sucks, but family visits mean that my food supply is solid. I have a work trip on Thursday and I have to get up at 3 a.m. for my flight. It is going to be a very rough day. Will my coworker need to push me in a wheelchair through the airport? Stay tuned.
Sunday, June 10, 2012
A Blogger's Kindness and Bird Photos Part I
Last week was awful. Missed work, urgent care, and weeping kind of awful.
However, my foul mood was intercepted by a blogger's thoughtful gift in the mail. Justine at A Half Baked Life sent me a lovely and delicious care package of these cookies.
I take cookie quality very seriously and do not make this assertion lightly: these are some of the best cookies I've ever had. They are possibly second only to my sister's chocolate chip cookies, and I would be disowned from my family if I claimed any cookies were better than those. Justine's cookies have fruit, almonds, and the clincher, coconut. Moist, soft, flavorful, substantial...they have it all. You must try them.
After eating an embarrassing number of these this week (only three were frozen for later), I'm feeling a tad better. A smidgen less pain and, perhaps more importantly, reminded of all the love and support I have. Thank you, Justine!
As my husband and I enjoyed the last of the cookies this morning on our deck, we watched a bluebird mommy and daddy bring bugs to their babies in the birdhouse.
Um, so perhaps I'm a little obsessed with my hydrangeas right now and didn't focus on the birdhouse. But you can see it in the background. We haven't seen the baby bluebirds yet, but from the sounds of their chirping, we have at least three. I mean, the mommy and daddy bluebird have at least three.
Bluebirds have been nesting in that house for years, which perhaps explains our lack of excitement about them. We've seen lots of their babies come and go and have become rather "been there, done that." Yeah, miracle of life, bird reproduction, blah blah blah. But nothing could have prepared us for the tiny baby cardinals my husband discovered this morning.
Amazing, right? So ugly cute.
My mom and dad are headed up here for a visit, and I told them we have birds aplenty to show them to compensate for our lack of baby humans. I estimate that we've had at least 20 baby birds hatch within a few feet of our house this spring. Overcompensate much? Lots of birdie Fertile Myrtles in these parts. Coming in a Part II post is a Carolina wren mommy defending her nest.
However, my foul mood was intercepted by a blogger's thoughtful gift in the mail. Justine at A Half Baked Life sent me a lovely and delicious care package of these cookies.
 |
| Perfection in a cookie |
After eating an embarrassing number of these this week (only three were frozen for later), I'm feeling a tad better. A smidgen less pain and, perhaps more importantly, reminded of all the love and support I have. Thank you, Justine!
As my husband and I enjoyed the last of the cookies this morning on our deck, we watched a bluebird mommy and daddy bring bugs to their babies in the birdhouse.
 |
| HYDRANGEA (and blue birdhouse) |
Bluebirds have been nesting in that house for years, which perhaps explains our lack of excitement about them. We've seen lots of their babies come and go and have become rather "been there, done that." Yeah, miracle of life, bird reproduction, blah blah blah. But nothing could have prepared us for the tiny baby cardinals my husband discovered this morning.
 |
| Four babies tucked away in the butterfly bush |
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| Our little beauties |
Amazing, right? So ugly cute.
My mom and dad are headed up here for a visit, and I told them we have birds aplenty to show them to compensate for our lack of baby humans. I estimate that we've had at least 20 baby birds hatch within a few feet of our house this spring. Overcompensate much? Lots of birdie Fertile Myrtles in these parts. Coming in a Part II post is a Carolina wren mommy defending her nest.
Friday, June 8, 2012
To the Coworker Who Saw Me Crying Yesterday
I truly appreciate your concern, but yesterday's pain episode isn't out of left field for me. I haven't kept you completely up to date on the status of my pain because I'm bored with it. I want to talk about other stuff, do other things, and actually work. But I've never been close to being rid of the pain since my surgery 3 months ago. It just ebbs and flows.
Another reason I haven't wanted to talk about it is because I don't want to open the floodgates. That's why I may seem detached and unemotional when I talk about how I'm doing. If I really tell you, if I really let my guard down, I may start crying and not be able to stop. I've cried enough on my own and am not a huge fan of doing it in front of other people, especially at work.
Yes, my pain was severe yesterday and still is. But I don't think it's ER-worthy. In the past 3 months, I have had dozens of doctor's appointments to confirm that I'm not dying or criminally insane, and I don't think they would tell me anything different today.
I have a call into my pain doctor but the asshole clinic isn't calling me back. On the triage nurse's message, she says that they'll get back to you ASAP. If you leave multiple messages, it will delay their response. If you call after 3:00 pm, they won't respond until the next day. I called at 3:02 yesterday. They say prescription refills can take up to 48 hours. What do you bet they aren't including weekends as part of their estimate?
So I suppose I'm expected to either suck it up and deal with pain at 7 or 8, or go to the ER and wait hours to be seen by someone who can't offer me a better diagnosis. I'd rather suck it up. Call me crazy, but I don't really want to rack up more medical expenses for no reason, especially after the $1200 (after insurance) appointment at a psych clinic that determined I'm not a drug seeker.
I will be getting another opinion soon, this time by a surgeon at the clinic where I had my endometriosis surgery. No, there is no way I'm having laparoscopic surgery again, not after the past 3 months., but maybe this doctor will have a new idea for what's going on. Probably not, though. The physicians I've seen already are probably among the best in the state, if not the region, and I trust them.
I have an idea of what brought on this flare, but, no offense, I'd rather not share it with you, you being a coworker and all. There are some things I'd just rather not disclose about my lady parts. I do have a few boundaries.
As to the question of whether my pain is under control, well, it's complicated. It's been under control for the most part lately with the multiple non-narcotic prescriptions I take for it, but when you saw me crying uncontrollably, it was not under control. I have not yet figured out how to anticipate every new throw my condition will hurl at me.
So I'm sorry for not keeping you in the loop. Your support is amazing and the love so many people are directing my way is what's keeping me going.
Thanks,
Cry Baby
Another reason I haven't wanted to talk about it is because I don't want to open the floodgates. That's why I may seem detached and unemotional when I talk about how I'm doing. If I really tell you, if I really let my guard down, I may start crying and not be able to stop. I've cried enough on my own and am not a huge fan of doing it in front of other people, especially at work.
Yes, my pain was severe yesterday and still is. But I don't think it's ER-worthy. In the past 3 months, I have had dozens of doctor's appointments to confirm that I'm not dying or criminally insane, and I don't think they would tell me anything different today.
I have a call into my pain doctor but the asshole clinic isn't calling me back. On the triage nurse's message, she says that they'll get back to you ASAP. If you leave multiple messages, it will delay their response. If you call after 3:00 pm, they won't respond until the next day. I called at 3:02 yesterday. They say prescription refills can take up to 48 hours. What do you bet they aren't including weekends as part of their estimate?
So I suppose I'm expected to either suck it up and deal with pain at 7 or 8, or go to the ER and wait hours to be seen by someone who can't offer me a better diagnosis. I'd rather suck it up. Call me crazy, but I don't really want to rack up more medical expenses for no reason, especially after the $1200 (after insurance) appointment at a psych clinic that determined I'm not a drug seeker.
I will be getting another opinion soon, this time by a surgeon at the clinic where I had my endometriosis surgery. No, there is no way I'm having laparoscopic surgery again, not after the past 3 months., but maybe this doctor will have a new idea for what's going on. Probably not, though. The physicians I've seen already are probably among the best in the state, if not the region, and I trust them.
I have an idea of what brought on this flare, but, no offense, I'd rather not share it with you, you being a coworker and all. There are some things I'd just rather not disclose about my lady parts. I do have a few boundaries.
As to the question of whether my pain is under control, well, it's complicated. It's been under control for the most part lately with the multiple non-narcotic prescriptions I take for it, but when you saw me crying uncontrollably, it was not under control. I have not yet figured out how to anticipate every new throw my condition will hurl at me.
So I'm sorry for not keeping you in the loop. Your support is amazing and the love so many people are directing my way is what's keeping me going.
Thanks,
Cry Baby
Sunday, June 3, 2012
Happy Anniversary to Me
My 3-year TTC anniversary is coming up in August, but I feel a bit like a fraud for saying that. We haven't actually TTCed for the past year in any sense of the word. No timed intercourse, no IUIs, no IVF. I did deal with healing from a miscarriage, waiting on our lost baby's chromosome testing results, and undergoing two surgeries with sucktastic post-op recoveries. And yet, even after a horrible year for my body, I find myself trying to write off the past year as if it doesn't count as time TTCing. Part of it is not wanting to seem like I'm fronting around other IFers.
I've heard lots of sentiments similar to mine in the IF community; IFers who have taken breaks and imply that their months not spent TTCing don't count. Friends with PCOS have said that since they didn't ovulate during the first year of trying, it didn't actually count as trying. Or they only ovulated 3 times in a year so somehow, implying that they only get credit for being in pain part of that year.
The pain-minimizing phenomenon really jumped out at me at the first meeting of my infertility support group. We started off introducing ourselves and telling everyone where we were in the process. I was about 1.5 years in at the time and hadn't started treatments, while everyone else had 3-4 years of TTC under their belts, often with IVF. I felt like a fraud—who was I to claim I'd suffered when these women had been through so much?
Although I saw them as legitimate IFers, the group members were creative at finding ways to minimize their own struggles. They'd say things like, "We've been trying for 4 years but we weren't really trying that entire time—we took time off between treatments." When it was my turn, I found myself saying, "I've only been trying for one and half years and we haven't started treatments yet. We're early in the process." I'd had a miscarriage and a laparoscopy, but I needed them to know that I realized I wasn't in their league, pain-wise.
Although pain minimizing drives me a bit crazy—we've all been through a lot—all pain isn't equal. Mali wrote a great post about this recently, emphasizing that this doesn't mean we shouldn't grieve, just that we need to keep some perspective about it. So true.
I talked about perspective recently with my therapist, who says there are two ways to look at a personal struggle. To paraphrase and probably oversimplify it, you can concentrate on how much worse you have it than everyone else, or you can focus on how others have it worse than you. Clinical outcomes, however they were measured, tend to be better for those who concentrate on how others have it worse.
Lately, even with my ongoing pain, I've mostly been thinking lately about how others have it worse. I'm in a gratefulness phase, which has definitely not always been the case since we started trying. I feel like I have a pretty good perspective about all of this, but I'm not going to minimize what I've been through. I'm 3 full years into TTC and it still sucks.
*****
On the topic of gratefulness, you all constantly surprise me with the thought and love you put into writing comments. You may not be huggers and I'm not even super huggy myself, but your comments feel like big hugs coming through the screen. I tear up while I read them and reread them when I need support. Thank you.
I welcome feedback if I'm saying something ridiculous, too. If I need to have my thoughts rearranged, let me know. In a nice way. :)
*****
I'm going on the Pill in the hope that calming down some of my monthly hormonal fluctuations will decrease my pain. An additional benefit is that it's birth control; with the pain meds I'm taking, I can't safely get pregnant. A huge drawback is that the Pill tends to turn me into Crazy Town, weepy and prone to temper outbursts. People need to steer clear of me for the next few months.
When I talked to my RE about getting the Pill prescription, she seemed really surprised that I'm still in this much pain. It scares me to be this much of an outlier; she's essentially telling me I'm the 0.01%. I think I freak her out—I have been in constant pain for 3 months as a result of her performing surgery on me. And she doesn't seem to know what to make of me.
My pain doc seems really sure of my diagnosis, though. She hasn't shared the medical terminology for it, but it has to do with my history of pelvic pain, endo, and surgery sensitizing the nerves further. I haven't asked her about my prognosis, but I need to. Big time.
So I have the expert opinions of two doctors. One is unsure of my diagnosis and worried about me, and the other says I just got screwed genetically and I'll eventually get better (at least, I hope she thinks I'll get better). I'm starting to think a tad about getting a third opinion, although I'm not sure if it's necessary. Pros are that it could give me peace of mind, help me get out of pain, and prevent this kind of shitstorm in the future. Cons are that it's yet another appointment and copay, and I'm actually pretty confident in my pain doctor. My pelvic pain was on the rise even before this latest surgery (thank you, blogging, for helping me remember that), and the uterine balloon was the straw that broke the camel's back. I'll be thinking about a possible third opinion.
*****
In addition to "celebrating" our 3-year TTC anniversary, my husband and I had our 5-year wedding anniversary yesterday. :) Love you, baby!
Alright, I need to go read my book club book on our deck. It's 80 degrees, sunny, and the mosquitoes haven't taken over yet. Have a good one!
I've heard lots of sentiments similar to mine in the IF community; IFers who have taken breaks and imply that their months not spent TTCing don't count. Friends with PCOS have said that since they didn't ovulate during the first year of trying, it didn't actually count as trying. Or they only ovulated 3 times in a year so somehow, implying that they only get credit for being in pain part of that year.
The pain-minimizing phenomenon really jumped out at me at the first meeting of my infertility support group. We started off introducing ourselves and telling everyone where we were in the process. I was about 1.5 years in at the time and hadn't started treatments, while everyone else had 3-4 years of TTC under their belts, often with IVF. I felt like a fraud—who was I to claim I'd suffered when these women had been through so much?
Although I saw them as legitimate IFers, the group members were creative at finding ways to minimize their own struggles. They'd say things like, "We've been trying for 4 years but we weren't really trying that entire time—we took time off between treatments." When it was my turn, I found myself saying, "I've only been trying for one and half years and we haven't started treatments yet. We're early in the process." I'd had a miscarriage and a laparoscopy, but I needed them to know that I realized I wasn't in their league, pain-wise.
Although pain minimizing drives me a bit crazy—we've all been through a lot—all pain isn't equal. Mali wrote a great post about this recently, emphasizing that this doesn't mean we shouldn't grieve, just that we need to keep some perspective about it. So true.
I talked about perspective recently with my therapist, who says there are two ways to look at a personal struggle. To paraphrase and probably oversimplify it, you can concentrate on how much worse you have it than everyone else, or you can focus on how others have it worse than you. Clinical outcomes, however they were measured, tend to be better for those who concentrate on how others have it worse.
Lately, even with my ongoing pain, I've mostly been thinking lately about how others have it worse. I'm in a gratefulness phase, which has definitely not always been the case since we started trying. I feel like I have a pretty good perspective about all of this, but I'm not going to minimize what I've been through. I'm 3 full years into TTC and it still sucks.
*****
On the topic of gratefulness, you all constantly surprise me with the thought and love you put into writing comments. You may not be huggers and I'm not even super huggy myself, but your comments feel like big hugs coming through the screen. I tear up while I read them and reread them when I need support. Thank you.
I welcome feedback if I'm saying something ridiculous, too. If I need to have my thoughts rearranged, let me know. In a nice way. :)
*****
I'm going on the Pill in the hope that calming down some of my monthly hormonal fluctuations will decrease my pain. An additional benefit is that it's birth control; with the pain meds I'm taking, I can't safely get pregnant. A huge drawback is that the Pill tends to turn me into Crazy Town, weepy and prone to temper outbursts. People need to steer clear of me for the next few months.
When I talked to my RE about getting the Pill prescription, she seemed really surprised that I'm still in this much pain. It scares me to be this much of an outlier; she's essentially telling me I'm the 0.01%. I think I freak her out—I have been in constant pain for 3 months as a result of her performing surgery on me. And she doesn't seem to know what to make of me.
My pain doc seems really sure of my diagnosis, though. She hasn't shared the medical terminology for it, but it has to do with my history of pelvic pain, endo, and surgery sensitizing the nerves further. I haven't asked her about my prognosis, but I need to. Big time.
So I have the expert opinions of two doctors. One is unsure of my diagnosis and worried about me, and the other says I just got screwed genetically and I'll eventually get better (at least, I hope she thinks I'll get better). I'm starting to think a tad about getting a third opinion, although I'm not sure if it's necessary. Pros are that it could give me peace of mind, help me get out of pain, and prevent this kind of shitstorm in the future. Cons are that it's yet another appointment and copay, and I'm actually pretty confident in my pain doctor. My pelvic pain was on the rise even before this latest surgery (thank you, blogging, for helping me remember that), and the uterine balloon was the straw that broke the camel's back. I'll be thinking about a possible third opinion.
*****
In addition to "celebrating" our 3-year TTC anniversary, my husband and I had our 5-year wedding anniversary yesterday. :) Love you, baby!
Alright, I need to go read my book club book on our deck. It's 80 degrees, sunny, and the mosquitoes haven't taken over yet. Have a good one!
Friday, June 1, 2012
My Husband As a Patient
It's become abundantly clear since my husband broke his arm that he's not used to being a patient. I've been to about a million doctor's appointments in the past few years; him, an annual physical. Me, depleting our savings on repairing my uterus and receiving psychotherapy; him, occasionally spending a little on a new computer gadget. So it makes sense that I've got the patient routine down pat while he's just starting to navigate the system for his own needs.
At urgent care right after he broke his arm, the doctor asked him, "And who are you?" as one of their patient identification questions. He thought she was joking, so joked back with, "I'm the victim!" Uh, no, honey. State your name.
Yesterday, I went with him for a follow-up x-ray to make sure the broken bone hadn't displaced. I was really nervous for him; after all, I'm used to receiving bad news in the doctor's office. I'm often the statistically unlikely case and maybe my bad luck had worn off on him. Two of my friend's daughters have recently had emergency surgery for broken arms. Broken arms are serious shit.
My husband didn't seem too concerned about the x-ray. When the doctor came back into the room to discuss the results, my husband barraged her with less pressing matters. Can he do such-and-such, is this twinge normal, etc. HONEY! Let the woman tell us the x-ray results! She might be about to tell us that our next stop today is the hospital!
He finally allowed her time to tell us that his arm looked great, thank goodness. Surgery/casts avoided once more.
His naivete about medical stuff is endearing. It's amazing that he's retained some innocence after all I've been through. He's quite adept at helping me maneuver the medical system, but when it comes to him being the patient, he seems a bit lost.
****
Now I'm going to launch into another "woe is me" pain tirade, so feel free to leave off if you aren't in the mood/want me to get a life/have had enough of my griping.
I'm sick of this shit. I'm also PMSing and crampy, both of which are not helping my attitude at the moment. I'm starting to see trends with the pain. Walking = more pain, which I've known for a while but sometimes have to relearn. My menstrual cycle is also closely associated with the pain. After this period, I'll probably feel pretty good for about a week before ovulation pain begins. After ovulating, I might get a little relief before the late luteal phase cramps kick in. All the normal cycling stuff further inflames whatever nerves, tendons, and muscles that already hate me from the surgeries. I'm starting to admit that I need to think about this pain in the long term. There will likely be no 5Ks this fall, more battles lost to cellulite, and a need to accept this pain into my life for now.
Writing this post reminded me to call my RE to see if maybe the Pill could calm down some of this. I have less endo pain when I'm taking it so it seems like it could be an option. It's not like we are going to be TTC anytime soon, anyway. And I haven't talked my RE in a couple of weeks and she probably wants to hear my slightly annoying voice—ha.
I've had adoption on my mind. A friend recently adopted a baby boy and it gave me hope, hope that sometimes adoption works out and hope that we have other options to explore. And maybe I'm looking for a way out of this pain hellhole, but I keep thinking of reasons I want to stop giving my body to The Cause. What if my next 3D sono causes a pain flare? What if we see more scar tissue? I'm sure as hell not going to have another uterine surgery to remove it.
What if we don't see scar tissue and we try another painful letrozole cycle, and I get pregnant only I'm in pain the entire time and the delivery leaves me with chronic pelvic pain for the rest of my life? Or I get pregnant from letrozole, miscarry, and have another D&C that flares my pain for the rest of my life? Or I don't get pregnant but the letrozole cycles themselves give me pain for the rest of my life?
Obviously, there's a lot of fear going on. But there's also hope. Hope that maybe someday soon I can give my body the break it desperately needs. Not the kind of break where you take a few months off—I've taken off for almost a year, if taking time off includes endless procedures and surgeries. I want the kind of break where we get off the damn TTC treadmill and find a way to start healing from the experience.
At urgent care right after he broke his arm, the doctor asked him, "And who are you?" as one of their patient identification questions. He thought she was joking, so joked back with, "I'm the victim!" Uh, no, honey. State your name.
Yesterday, I went with him for a follow-up x-ray to make sure the broken bone hadn't displaced. I was really nervous for him; after all, I'm used to receiving bad news in the doctor's office. I'm often the statistically unlikely case and maybe my bad luck had worn off on him. Two of my friend's daughters have recently had emergency surgery for broken arms. Broken arms are serious shit.
My husband didn't seem too concerned about the x-ray. When the doctor came back into the room to discuss the results, my husband barraged her with less pressing matters. Can he do such-and-such, is this twinge normal, etc. HONEY! Let the woman tell us the x-ray results! She might be about to tell us that our next stop today is the hospital!
He finally allowed her time to tell us that his arm looked great, thank goodness. Surgery/casts avoided once more.
His naivete about medical stuff is endearing. It's amazing that he's retained some innocence after all I've been through. He's quite adept at helping me maneuver the medical system, but when it comes to him being the patient, he seems a bit lost.
****
Now I'm going to launch into another "woe is me" pain tirade, so feel free to leave off if you aren't in the mood/want me to get a life/have had enough of my griping.
I'm sick of this shit. I'm also PMSing and crampy, both of which are not helping my attitude at the moment. I'm starting to see trends with the pain. Walking = more pain, which I've known for a while but sometimes have to relearn. My menstrual cycle is also closely associated with the pain. After this period, I'll probably feel pretty good for about a week before ovulation pain begins. After ovulating, I might get a little relief before the late luteal phase cramps kick in. All the normal cycling stuff further inflames whatever nerves, tendons, and muscles that already hate me from the surgeries. I'm starting to admit that I need to think about this pain in the long term. There will likely be no 5Ks this fall, more battles lost to cellulite, and a need to accept this pain into my life for now.
Writing this post reminded me to call my RE to see if maybe the Pill could calm down some of this. I have less endo pain when I'm taking it so it seems like it could be an option. It's not like we are going to be TTC anytime soon, anyway. And I haven't talked my RE in a couple of weeks and she probably wants to hear my slightly annoying voice—ha.
I've had adoption on my mind. A friend recently adopted a baby boy and it gave me hope, hope that sometimes adoption works out and hope that we have other options to explore. And maybe I'm looking for a way out of this pain hellhole, but I keep thinking of reasons I want to stop giving my body to The Cause. What if my next 3D sono causes a pain flare? What if we see more scar tissue? I'm sure as hell not going to have another uterine surgery to remove it.
What if we don't see scar tissue and we try another painful letrozole cycle, and I get pregnant only I'm in pain the entire time and the delivery leaves me with chronic pelvic pain for the rest of my life? Or I get pregnant from letrozole, miscarry, and have another D&C that flares my pain for the rest of my life? Or I don't get pregnant but the letrozole cycles themselves give me pain for the rest of my life?
Obviously, there's a lot of fear going on. But there's also hope. Hope that maybe someday soon I can give my body the break it desperately needs. Not the kind of break where you take a few months off—I've taken off for almost a year, if taking time off includes endless procedures and surgeries. I want the kind of break where we get off the damn TTC treadmill and find a way to start healing from the experience.
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