First, just want to wish everyone a very happy Memorial Day, and thanks beyond words to those for whom we celebrate this holiday.
This weekend was a lovely, long, 3-day weekend. It was not that Nate and I did anything special - on Saturday we were human slugs - taking naps and watching cheesy tv, on Sunday we visited family and engaged in heated political and religious debates, and Monday we ran generic errands together, had a lovely dinner and enjoyed some time together.
And the best part? For the duration of the entire three days, I was not doubled over or curled up in a fetal position. I was not crying, unable to leave the heating pad. I was able to relax, sleep, enjoy my family and my husband. In all honesty, I don't quite remember the last time that has happened.
So even though this weekend was very ordinary, I am so very thankful that I was able to participate and appreciate the very ordinariness of it. So thankful. And so joyful.
Many hopes for a joyful holiday for you all.
Monday, May 31, 2010
Finding Joy - Day 2
Today's exercise in joy comes from a simple, everyday routine with our youngest cat, Boo. As you may have read, we currently have two cats:
Boo (isn't he cute?)
and
Holly (she's gorgeous and she knows it)
For as long as I can remember, I have wanted a cat who was a "cuddler". Neither of these two fit that description. Holly can be rather aloof, and Boo is far too busy doing other things that are much more important. When we first brought Boo home, Holly was not best pleased with her new "brother". And all he wanted to do was "play" with his new sister. And then she would scream like someone had just set her tail on fire. To help ease the situation, I would often try to "redirect" Boo by playing with him. a lot. And so now he sees me as the Chief Playmate. Anytime I try to pet or snuggle with him, he streaks away and brings me back a toy.
In an effort to help him expend some of his pent up kitten energy in a "positive way", I started having a set "play time" with Boo shortly after I came home from work each day. It usually involves playing an enthusiastic game of "fetch" with a blue ball that has been "loved" as much as the Velveteen Rabbit. And once I started this time with Boo, it became sacrosanct.
Every night, as soon as I come through the door, he excitedly bounds up to me, crying enthusiastically, and drops his beloved ball at my feet. And if I'm honest, there are times I don't really feel like playing right away. Especially when Smaug is stomping about, or when I get in rather late, like tonight at 2 am.
But here's the thing: this is the way Boo is expressing his love. When I come home, his whole body quivers in excitement, and he cries out his joy in simply being with me. He acts as though there is no greater moment in the day than when "mom" comes home "just" to play with him.
And even if he doesn't express his love in the manner I fantasize about, our routine is still an expression of love - my love for Boo and his love for me. And the more I don't feel like doing it, but choose to do so with joy anyway, the more love is expressed. So this is why, tonight (or rather in the wee hours of this morning), after a long day and when all I'd like is to curl up under our cozy comforter and drift off, I find such joy in engaging in play time with my boy. And learning to listen to the way in which he expresses his love for me.
Saturday, May 29, 2010
Finding Joy - Day 1
Whimsey, at The Creamery, had the brilliant idea about searching for joy in the everyday. If you'll read her post, you'll see how she very eloquently talks about the idea that joy needs to be extracted from life. And in her subsequent posts, she has illustrated how to do that beautifully.
Admittedly, I am quite late at joining in this project, but it's such a worthwhile project, I thought I'd chime in.
And I think this one will come as a surprise to almost all of us:
Admittedly, I am quite late at joining in this project, but it's such a worthwhile project, I thought I'd chime in.
And I think this one will come as a surprise to almost all of us:
Now I have ridden the stirrups across the nation. I've been through the good, the bad, and the ugly. And even with the best doctors, I've never relished the experience; no woman ever does.
But if you've read along you know I've kind of been at a stand still treatment wise, without much idea of where to turn. And this Thursday's appointment, while not my favorite way to pass an afternoon, was with a doctor I really love and trust. And who was open to some new ideas for treatment. And most of all, listened and was supportive. And in the midst of this, manages to give me some hope.
And that, my friends, is a beautiful thing. And worthy of joy. And you can bet when I was done with the doctor, I spent the rest of the afternoon exploring parts of the City, enjoying some delicious chocolate and strawberry crepes (you'd prefer a picture of those, now wouldn't you?), and popping in to some local shops I've wanted to check out for quite a while. The sun was shining, it was a gorgeous day, and I had some rare time to spend on myself. Yet again, more joy.
Now hope can be a double-edged sword - all of us on this journey know this. How hard it is to find Her peaking out and before you know it she's blossomed and living large. And then she gets dashed and shredded, and you swear you are never going to let Her get a toe-hold in your heart again - it's just too painful. And that may be where this may lead. And if it does, I will surely know Hurt. But I believe joy is a choice - something you choose to grab on to. So for now, I will grab on to it and celebrate it with all I've got.
Thanks, Whimsey, for this challenge to recognize and pursue the joy in our lives.
Foto Friday 2
This week marked the end of some things and the beginning of others.
For the past 13 years, this has been my view every spring on my way in to work. I have served in a variety of positions - from claims examiner to fraud investigator, to business analyst, to technical specialist in systems management. Working for the government has often been boring as hell, but brought with it a sense of security, stability. Especially in these uncertain economic times, there is nothing like working for the Unemployment Office to make you understand the demand for your services. But regardless of career highs or lows, I always thought I'd stay there, and eventually retire from there. I used to refer to it as a "gilded cage", because even if I didn't always like the work I was doing, they paid just enough and had enough benefits to make going anywhere else pretty difficult. But don't misunderstand me, I have always been grateful for the work.
But Friday marked my last day there for a while, at any rate. I have taken a leave of absence in order to join a related organization for at least the next 6 months. If I like it and they like me, I may have the opportunity to work with them indefinitely. It's an opportunity to learn something entirely different, use my abilities in an entirely new way, and stretch my comfort zone a bit. And I'll get the chance to work with some really great people, too.
So leaving felt a bit surreal, but it also felt right.
I also let go of something else this week:
Yes, for first time in about 6 years, I am off BCPs. It also, is a bit nerve wracking. I want off of them because I want to see what my body is like on its own. Because if the Porphyria thing is a factor, BCPs are totally contraindicated. I figured it was a relatively simple thing I could do, and keep a close eye to see if it makes a difference on Smaug. In the back of my mind, though, there is also a "but". Because what if the BCPs have been helping keep the endo in check, and if I go off them, what if it comes back? So I'm only going off them for 3 months. And we'll see what happens.
I saw Dr. Love on Thursday. She supports coming off the BCPs for 3 months. She thinks it will take more than a month to see any effect, but the endo should be ok for that time period. She said 6 months would be be risking too much endo-wise, but 3 should be ok. So it's been 6 days thus far, and I've noticed at least one thing: my libido has definitely perked up. And so far, Smaug just seems a bit confused, unsure if he's supposed to sleep in or jump up and down on my ovary.
Dr. Love also prescribed a new medicine. It's supposed to be a medicine of last resort, and it will most assuredly knock me out, but it will give me some place to turn when I can't stand it anymore. So that's a good thing, hopefully.
So this week has seen the end of some pretty significant things, and opened some new doors. I'm nervous and excited about what's around the corner.
Sunday, May 23, 2010
Foto Friday
I'm borrowing a similar idea from other blogs -
*Pay no attention to the man behind the curtain saying this was posted on Sunday. :)
OK, quality wise - this is one of the worst pictures I've taken*. It was taken at the spur of the moment with my POS camera phone. But content-wise, its another story entirely. On May 20, I had the opportunity to meet a hero of mine - John Grogan, author of Marley and Me. I was almost giddy.
Although it is admittedly a rather awful picture, to me it represents my deep love of photos and animals.
I have often referred to my youngest cat, Boo, as a "feline Marley". And, true to form, in a moment of inattention, I turn to find Boo chomping down on my personally autographed copy of the book. Somehow, I think Marley would have approved:).
*Note: Nate, reading over my shoulder as I write this, wants me to clarify that he actually took the picture with my camera phone. And while he acknowledges that the camera quality was crap, he was glad to be on hand to capture and share in such a happy moment for me.
*Pay no attention to the man behind the curtain saying this was posted on Sunday. :)
OK, quality wise - this is one of the worst pictures I've taken*. It was taken at the spur of the moment with my POS camera phone. But content-wise, its another story entirely. On May 20, I had the opportunity to meet a hero of mine - John Grogan, author of Marley and Me. I was almost giddy.
Although it is admittedly a rather awful picture, to me it represents my deep love of photos and animals.
I have often referred to my youngest cat, Boo, as a "feline Marley". And, true to form, in a moment of inattention, I turn to find Boo chomping down on my personally autographed copy of the book. Somehow, I think Marley would have approved:).
*Note: Nate, reading over my shoulder as I write this, wants me to clarify that he actually took the picture with my camera phone. And while he acknowledges that the camera quality was crap, he was glad to be on hand to capture and share in such a happy moment for me.
Wednesday, May 19, 2010
Thankful
OK, first I want to thank each of you lovely commenters, thanks for being so tuned in to LFCA and taking time out of your busy day to leave such welcoming and encouraging sentiments on my blog. I honestly treasured each one. I am in the process of reading each of your blogs and I look forward to learning more about your respective journeys.
After I kinda "let it all hang out" in the last post, I realized there was another sentiment I wanted to add. Yes, much of what I have been through has been difficult, but in many ways, I am also quite blessed.
One fundamental reason is actually quite simple: As difficult and discouraging as it is to go through pain cycle after pain cycle, I actually do get a break from the unrelenting pain.
And while it is relatively brief, it makes all the difference. The times in between Smaug's outbursts are not entirely free of pain. Quite the opposite - they are often rather painful, just significantly less so then when he is on the attack. But that brief relative reprieve is critical. It gives me a chance to catch my breath, to gather strength, and most importantly, remind me of what it's like to be myself when I'm not bowed by pain.
I can work, enjoy hobbies, family, my husband, appreciate good books and good chocolate. And that reminder of who I really am is what keeps me going. In the terrific novel "A Thousand Splendid Suns," one of the characters, Miriam's mother (a rather unlikeable character) is fighting her daughter's desire to go to school. She feels that woman do not stand to gain much from education. Instead, she feels the critical lesson a woman can learn is "how to endure". And while I certainly disagree with her stance on formal education, the idea of "learning how to endure" certainly resonates with me. So with each episode of Smaug's wrath, I focus on simply getting through it, of enduring to the end of that cycle. And in the times in between the worst of the pain, I try to focus on cramming the most and best living I can into such times.
As I wrote in an earlier post, the 3 years I struggled to recover from debilitating knee injuries were some of the worst years I have experienced. I rarely got a break from the pain, and I would have done almost anything to Make. It. Stop. And when the pain goes on without end like that, its all you can see, all you know, and like water wearing away a stone, the pain slowly erodes who you are until all you can remember is the pain.
Before things had gone so Wrong with my knee, in a whimsical moment, I wrote down a list in my journal of the top things I would never want to live without. They included, in no particular order:
1. Laughter
2. Really good books.
3. Times with family and friends.
4. The feeling and the sound of the resounding purr of my cats against me.
5. Great chocolate.
6. The ability to challenge my mind.
And in the midst of the worst of those 3 years, when my quality of life was so diminished I didn't know what was worth staying alive for, I stumbled upon that list again. And I was stunned to realize that despite the diminished quality of my life, I was still able to enjoy each and every item on my list. That list ended up acting as my North Star, guiding me and giving me something to focus on when I was so disoriented by the swirling mists of pain all around me.
And in a similar fashion, the temporary reprieves I get in between the worst pain cycles, even when it only lasts a few days, is enough to remind me of who I am and all that I love. And it is what I cling to when I again get lost amidst the devastating storms of pain.
In addition to what I had listed all those years ago, I would like to add the following:
1. The simple joy of sharing my life with this amazing man who "gets me" down to my very soul, and loves me.
2. The ability to contribute to the enrichment of others, in some capacity.
3. The ability to love with all my heart and soul.
4. The wonderful, cozy, all-is-right-with-the-world feeling I get when I snuggle in next to my husband at night.
5. The ability to love mightily, and share in the life of a child.
So now it's your turn:
What gets you through the terrible times in life? What tops your list of things you wouldn't want to live without?
After I kinda "let it all hang out" in the last post, I realized there was another sentiment I wanted to add. Yes, much of what I have been through has been difficult, but in many ways, I am also quite blessed.
One fundamental reason is actually quite simple: As difficult and discouraging as it is to go through pain cycle after pain cycle, I actually do get a break from the unrelenting pain.
And while it is relatively brief, it makes all the difference. The times in between Smaug's outbursts are not entirely free of pain. Quite the opposite - they are often rather painful, just significantly less so then when he is on the attack. But that brief relative reprieve is critical. It gives me a chance to catch my breath, to gather strength, and most importantly, remind me of what it's like to be myself when I'm not bowed by pain.
I can work, enjoy hobbies, family, my husband, appreciate good books and good chocolate. And that reminder of who I really am is what keeps me going. In the terrific novel "A Thousand Splendid Suns," one of the characters, Miriam's mother (a rather unlikeable character) is fighting her daughter's desire to go to school. She feels that woman do not stand to gain much from education. Instead, she feels the critical lesson a woman can learn is "how to endure". And while I certainly disagree with her stance on formal education, the idea of "learning how to endure" certainly resonates with me. So with each episode of Smaug's wrath, I focus on simply getting through it, of enduring to the end of that cycle. And in the times in between the worst of the pain, I try to focus on cramming the most and best living I can into such times.
As I wrote in an earlier post, the 3 years I struggled to recover from debilitating knee injuries were some of the worst years I have experienced. I rarely got a break from the pain, and I would have done almost anything to Make. It. Stop. And when the pain goes on without end like that, its all you can see, all you know, and like water wearing away a stone, the pain slowly erodes who you are until all you can remember is the pain.
Before things had gone so Wrong with my knee, in a whimsical moment, I wrote down a list in my journal of the top things I would never want to live without. They included, in no particular order:
1. Laughter
2. Really good books.
3. Times with family and friends.
4. The feeling and the sound of the resounding purr of my cats against me.
5. Great chocolate.
6. The ability to challenge my mind.
And in the midst of the worst of those 3 years, when my quality of life was so diminished I didn't know what was worth staying alive for, I stumbled upon that list again. And I was stunned to realize that despite the diminished quality of my life, I was still able to enjoy each and every item on my list. That list ended up acting as my North Star, guiding me and giving me something to focus on when I was so disoriented by the swirling mists of pain all around me.
And in a similar fashion, the temporary reprieves I get in between the worst pain cycles, even when it only lasts a few days, is enough to remind me of who I am and all that I love. And it is what I cling to when I again get lost amidst the devastating storms of pain.
In addition to what I had listed all those years ago, I would like to add the following:
1. The simple joy of sharing my life with this amazing man who "gets me" down to my very soul, and loves me.
2. The ability to contribute to the enrichment of others, in some capacity.
3. The ability to love with all my heart and soul.
4. The wonderful, cozy, all-is-right-with-the-world feeling I get when I snuggle in next to my husband at night.
5. The ability to love mightily, and share in the life of a child.
So now it's your turn:
What gets you through the terrible times in life? What tops your list of things you wouldn't want to live without?
Friday, May 14, 2010
Medical Overview/Timeline
Smaug is showing increasing signs of waking up and going on another tear about my abdomen, so I’d like to get this written before he hits his peak stride and I am incapacitated.
I realize that I have given bits and pieces about my medical past, but have not painted the whole picture/timeline.
**Warning/Disclaimer: This post will most likely deal with way too much TMI on a physical level, but also on an emotional level. I have waivered a bit about not sharing the whole thing, for several reasons, but then that would kind of diminish the point of this blog, wouldn’t it? I had wanted a safe place to honestly share this journey that I’m on and who I am. And for better or worse, there are some pretty rotten bumps in this road. So fuck it, this is a place for me to be myself. But be warned: If you’re not in the mood to read some pretty heavy stuff, then this is not the post for you.
For the rest of you, thanks for coming along for the ride.
September 11, 1975: Baby Hannah comes into this world via C-section, after 24 hours of brutally hard Stage 2 labor, during which time my mother punched out her OB. I kid you not. Relatively idyllic time (from my perspective, anyway) growing up on family farm commences and continues for the next 6 years.
1981 – 1988: From the age of approximately 6 – 13, I was routinely tortured, raped, and abused by an older cousin. It went far beyond rape, and included such games as “Let’s see how far we can shove this toilet plunger inside you.” This is important to note in this context because the damage that was inflicted to my reproductive system has been devastating and remains unresolved.
1983: Ruptured appendix. Surgery and several weeks in the hospital set that right.
1985: Hospitalized for ulcer. At the time, no one could fathom why a 10 year old should have an ulcer. And even more surprising, in hindsight, although they sent me to several counselors, and the warning signs were literally screaming at them, No One. Ever. Asked. Me . about what was going on with my cousin, or anything close to it.
1986: Begin menstruating, right on schedule. The second time, and ever since, was joined by debilitating cramps. At first, the doctor refused to treat them. After a phone call from the school nurse demanding he prescribe something as I was writhing and vomiting on her couch, he reluctantly did. No one ever questioned if there might be something else going on.
1993: First total knee reconstruction for left knee. Despite the surgeon being a complete asshole, I recovered beautifully. FYI, I had period at the time of the surgery. When I first was waking from anesthesia, it was the pain from cramps I was crying over, not my knee.
1995: The debilitating pain occurring with my period becomes more frequent – it comes every two weeks, like clockwork. After several trips to the ER and more than 1 ruptured cyst, it is determined that I am a “hard ovulator”. It still never occurs to anyone to see if there is anything more to this. I have my first (painful) pelvic exam, during which the doctor (PCP) laughs at me and tells me in future to go to an OB/GYN until “after you’ve had a kid or two and a pelvic exam is no big deal.” I am put on BCPs to help. Also, I develop severe asthma, and for the first time, am advised that I should never try to get pregnant because of my health.
1997: First total knee reconstruction for right knee. Much nicer/better surgeon, but I don’t heal “right”. The next two years consist of 2 more total reconstructions and 2 arthroscopies on this knee to try to “get it right”. There is no way to overstate the hell of those 2 years. I was in constant agony. We consulted surgeons across the East coast, including the inventor of the original surgery that had been performed on me. They cannot agree on the problem, and all want to do different, yet equally complex and debilitating surgeries. Despite my pleas, no one will consider doing a knee replacement because of my age (22). They will, however, consider doing an amputation. And God help me if I wasn’t tempted – the nerve damage that had been done was completely and totally devastating, and I was in the hospital more times than I was out. The idea of “phantom limb pain” was probably the only thing that stopped me.
1999 - 2001: In the midst of the knee drama, my digestive system completely decides to quit on me. I am completely unable to eat or drink anything, even water, experience unbelievable (upper) abdominal pain, and begin vomiting up to 30 times per day. I loose 70 pounds in 6 weeks. I am hospitalized for weeks. No clear answers are forthcoming, except that I have a “motility disorder” – your digestive system stops working. There is no reason why, except that “it is more frequent among women in their twenties, especially after surgeries.”
I am kept alive for the next year by being fed nutrients directly to my heart. As that’s a rather risky thing to do over the long term, they eventually switch to a “J-tube”. When the surgeon placed the J-tube, he commented that my intestines looked like “something you would find in a third world country.”
One bright spot: they switch medications to help the abdominal pain and my knee LOVES it. For the first time in 3 years, I am able to walk. Without crutches.
My insurance company, tired of the expenses I’m running up, drops me like a hot potato. Towards the latter part of 2001, I had stabilized somewhat. Desperate for insurance, I accepted a job with health benefits. I would work during the day, then come home and hook up to my feeding machine and do treatments all night. No one, even me, ever imagines a future including pregnancy. We are just trying really hard to imagine any kind of a future for me, period.
2002 – 2003: Very, very gradually, for no apparent explanation, my stomach issues begin to resolve. Slowly, I can begin to drink little bits, and then eat little bits. It is during this time that I meet, befriend, and begin dating Nate, my heart’s delight and treasure.
2003: It is also during this time that the ever-present “hard ovulation pain” and menstrual cramps begin broadening their horizons. They don’t limit themselves to just those times, and become an almost constant thing. My mother, and Nate, insist on me seeing an OB/GYN. In the midst of all the stomach and knee drama, I had gone off BCPs a long time ago. First time on the dildocam, Fibroid In Residence is discovered, endometriosis suspected.
October 2003: First laparoscopy done: Stage 4 Endometriosis, shitloads of scar tissue, Fibroid In Residence, and a cyst, just for the hell of it. The surgeon gets “most of the endo” and the cyst, and starts me on Lupron injections, for several years. Oh, the fun. But to be honest, the symptoms improve dramatically, and what remains is quite livable.
April 1, 2005: Nate proposes in a typically thoughtful and detailed manner. Love, love, LOVE that man. We plan to marry in May, 2006.
October 28, 2005: My father is diagnosed with advanced and very aggressive prostate cancer. They do not expect him to live until May 2006. We frantically throw everything together, including hand – sewing 6 bridesmaids dresses in 3 weeks. My sisters are amazing.
November 20, 2005: Wedding day. Despite our photographer being hospitalized the night before with Rocky Mountain Spotted Fever, of all things, and a car fire in my parents front yard as the replacement photographer was doing our photos, and many, many other mishaps, it was a glorious day, the best of my life. And yes, my father was there to dance with me and walk me down the aisle. My father and mother left for Georgia the next day, for treatment at a wonderful, highly advanced Prostate Cancer center. After aggressive treatment, my father is doing wonderfully and is thriving today.
December 1, 2005: During our 2 week honeymoon in Grand Cayman (fabulous, btw), enjoying “honeymoon type” activities, I discovered another symptom of endo raising its head: painful intercourse. For me, it was more like crippling pain after intercourse – the during part was entirely delightful. A panicked call to my OB/GYN upon our return yielded tenuous results. Perhaps he would do another lap, maybe sever a nerve in the cul de sac, if I wanted. WTF??? Research on the internet sent me consulting with the Center For Endometriosis Care in Atlanta, Ga.
March 1, 2006: We fly to Atlanta for Lap #2 with Dr. Albee at the CEC. Cannot state strongly enough how wonderful they were. We have no doubt that he saved my life. They also provided care that should be the Gold Standard for medical care. Now here’s a weird part – during this lap, even though the first surgeon had admitted that there had been areas of endo he could not remove, Dr. Albee did not find further endo. It is presumed that Lupron did its job. Instead, in addition to FIR, and another cyst, he found masses of scar tissue. So much that it had completely blocked my intestine. He thought they were going to have to remove a significant part of intestine, but after several hours of painstaking surgery, he was able to successfully restore it. I recovered from this surgery smoothly.
June 2006: Smaug begins to raise his head. We are bewildered. After ruling out a post –op infection, my OB/GYN sends me to another OB/GYN, a specialist in Philly, Dr. Suave.
2007: After an initially positive few visits wherein he promises me the world and as many children as we could possibly want , because, as he put it, “there is nothing we like better than making babies around here,” Dr. Suave is frustrated with me for not responding to his protocol. He quickly looses interest and refers me to Dr. Love.
January 2007 – December 2008: Begin treatments with Dr. Love. She is a “pelvic and sexual health” specialist. I adore her, which is a good thing, because I don’t even want to begin to tell you how “intimate” we were to get. Dildocams, bladder tests, injections-you-don’t-want-to-begin-to-imagine-where: all were de rigueur as treatment. Plus, I was referred for physical therapy. And yes, it was for internal physical therapy. Use your imagination. It is discovered that in addition to all the scar tissue, the abuse I suffered also nearly destroyed my pelvic floor, severely damaged my bladder, and caused muscle and nerve damage throughout.
January 2009: Dr. Love, upon further reflection, decides she really can’t do anything further for me until she knows what’s going on internally endo-wise, given that its been a while since my last lap. I refuse to go back to Dr. Suave. She refers me to Dr. RE for another lap.
February 2009: Although I do not want another lap, I am initially excited. I am at last referred to an RE. Maybe while she’s putting Smaug to rest she can also help us with the baby-making?? She is initially cautious and thorough, ensuring updated scans, tests, etc. I have lost count of the number of times I have now ridden that dildocam. Eventually, she also concludes that another lap is needed. She also Strongly Discourages any pursuit of baby-making at this time, citing “You have plenty of time for that, we have to get you better first.” And this is from an RE, to a patient who is 34.
March 2009 – September 2009: I drag my feet. Smaug gets worse. We take my niece, E, to the Florida Keys, where we live out one of my life-long fantasies – swimming with the dolphins. Eventually, I run out of excuses and the ability to endure Smaug’s increasingly devastating rampages – they leave me helpless – crying and vomiting in agony for days on end, unable to uncurl from a fetal position. I schedule the third Lap.
September 15, 2009: Third lap. We discover Jack Shit. No endo, a little scar tissue, FIR, another cyst. Nothing that would explain Smaug. And no, she did not find a fire-breathing dragon curled up on my left ovary. He must have borrowed The Ring, and was therefore invisible. It’s as good an explanation as anyone else has come up with. In the recovery room, she assures me “not to worry, together, we’ll get to the bottom of this, together, we’ll figure this out and get you better.” She includes an assortment of follow-up options she’d like to pursue at my post-op appointment.
October 2009: At post- op appointment, she has seemingly forgotten all the follow up she’d wanted to pursue. Nate helpfully reminds her. She’s non-committal at best. Then comes out and says she doesn’t think she can do anything further for me, has no other recommendations or referrals. I guess she didn’t want to break up with me in the Recovery Room. I am spitting mad, can do nothing but cry in the car. Nate feels helpless and gets snapped at for “acting like a man” and offering pointless suggestions in an effort to “fix things”.
November 2009 –February 2010: It is suggested that I might have a genetic disorder called “Acute Intermittent Porphyria”. Getting tested and the results is an absolute mind fuck. First I have it, then I don’t they had performed the wrong test, then they’re Not Certain – the results are somewhat positive. But frankly, it doesn’t look like that’s the answer. In the mean time, holy hell breaks loose when it appears the motility disorder that nearly killed me 10 years ago is raising its head again. For about 2 months, it’s very hard to eat or drink anything, and it’s a really shaky time. Am referred to Dr. Big, the GI specialist to see. In the time it takes to actually schedule the tests he suggested, the hospital goes on strike, and my symptoms vastly improve. He suspects nerve damage to the abdomen causes Gastroporesis, and in this instance, it was triggered by food poisoning.
March 2010 – Present: Now what?? I have no fucking clue. I go back to see Dr. Love at the end of May, and we’ll see where we go from here. I also have a PCP I adore, Dr. Saint, and she and I have worked out some things to try. #1 – Going off BCPs. This was my idea because I really don’t think they’re doing anything, and they may be masking things. But the flip side is maybe they really have been keeping endo in check and coming off will only Aggravate Things. So we’ll try for 2 months and see what Smaug thinks of that.
Also on the recommendation block is going to the Mayo Clinic. This is highly favored by Nate, my Mom, Dr. Saint, and Dr. Big. There is just simply too much unresolved medical shit going on to continue with a fragmented approach. But this scares me, because to me, they are the Place Of Last Resort. And what happens if the Place Of Last Resort also has no definitive answers? Dr. Saint advises me to see how long the wait to get an appointment is, and get my truckload of records together so that if/when I do decide to go, I will be all ready.
So that sums up the Most Important Bits. I did not include the lesser stuff, so though it might seem like it’s a catalogue of every cough and hiccup, it’s not. Through all this, Nate has been a rock. There are no words. Despite my reference to snapping at him before, when he sets his mind to it, which is quite often, he is the best listener ever. And sometimes he knows just when to say nothing and let me sob in his arms. And other times he gives me the push I need to pursue the Next Step. And through it all, he loves me for who I am.
For those of you who have made it through reading this far, thanks for sticking with it.
Sunday, May 9, 2010
What IF
OK, I started to write this during NIAW, but my dad needed major neurological surgery, and the past 10 days have been a blur of time in the hospital and in the car on the way to and from the hospital. So although I'm a bit late to the game, I'd still like to join my voice in this wonderful project, even if only in my own way.
As most of you know, we just commemorated NIAW - National Infertility Awareness Week.
The brilliant Mel at Stirrup Queens has been at the forefront of leading a multi-part project, called What IF, which provides a collaboration and platform to increase awareness for this issue. During the first part of this project, participants were asked share their "What if questions" with regard to infertility on the comment section of Mel's post. What resulted was a breathtaking collaboration of the many facets of infertility. If you haven't checked it out already, I urge you to go do so. Don't be surprised if it's something you need to take in a bit at a time. Go ahead and take a look - I promise I'll wait.
It was a big step for me to add my comment because it was the first time I participated in anything like this; it was the first time I really felt a strong desire to be a part of this issue, to share my voice in this way. Honestly, being so new to the blogging scene, this was one of the first comments I've ever left. And it touched me that someone wanted to know what I felt and hoped and feared.
What IF Part 2
2. Go back to your blog and explore that “what if” in a post:
OK, so I had 3 What IFs:
a.) What IF we are somehow able to bring a child into our lives, but unable to find a treatment/cure for my debilitating health issues?
b.) What IF despite the deepest desires of my heart, this makes me an inadequate/bad mother?
c.)What IF I never know the joy of helping my husband, who has lost his family, become the incredible father I know he will be?
So in my last post, I'm glad I introduced you to Smaug, because he is really what the heart and soul of what my What IFs are about. When I thought about my fears regarding IF, initially my concerns ran the gamut voiced by many others, along the lines of what if we never have children, how will we cope, who will I be? And I think C runs along those lines. But when I dug deeper inside, I realized that my strongest fears were more about what if my deepest desires come true, but the health issues haven't been resolved. And, even worse, what if this makes me a incompetent mother?
A.) I think my plans and hopes over the past few years have run along the lines of "fix this medical issue, and then you'll be able to get pregnant, and/or have children." It has always been my foremost need to fix the health problem, which would then enable me to get pregnant. For many, many reasons there has always been a background concern about my ability to get/stay pregnant, but I couldn't even begin to tackle that issue unless I dealt with the health problem first.
Smaug is the latest in the series of health concerns, but he has taken first place and held that title for the past 4 years. Despite that, I have clung to the dream of getting pregnant with a tenacity that would amaze Olympic athletes. Or denial, whichever shoe fits on a given day. Our inability to defeat Smaug, or the secondary health problems, for that matter, have made that dream whither down to the barest spark. Ever see the movie "Apollo 13"? Remember the line where Tom Hanks says "It will take us accomplishing 4,017 (or some similar extreme number) steps to be able to make it home. Right now, we're on like step 9." That's how I feel. The number of things that would have to come together for me to be able to get pregnant and deliver a healthy baby are beyond staggering; it really would take a miracle. And yet, there's that tiny sliver of that bitch Hope that whispers "And yet, the Apollo 13 crew did make it home safe. . ."
But after the unsuccessful last surgery, even Hope had to listen when Logic said, "If this is what you want, it really will take Other Means." That point was solidly driven home to the extent that in a flurry of inspiration, I even wrote our "Dear Birth Mother" letter. Which for me, is a SERIOUS admission that me being able to "naturally" (I hate that expression with regard to this subject) have a baby really is not gonna happen. At least a part of me acknowledges that.
But with that partial acknowledgement came the awareness that it may be possible to have a child and still be dealing with these health issues. oh fuck. . .
So what if we're granted the deepest desires of my heart, but Smaug is still on a rampage???
And this brings me to the second What IF:
B.) What if Smaug and other health issues compromise my ability to be a "good" mother? I understand that every parent gets sick, has off days, etc. But, take, for example, this last go round with Smaug. I only had 4 "good days" between Smaug's rampages. This last one was devastating. Sometimes Smaug awakens slowly, and builds to a roaring crescendo of agony. But this time, he was awakened at gale force. And I was completely flattened by it. I came within a whisper of waking Nate and asking Him to take me to the ER. I NEVER do that. Because I have experienced it so many times, I figure I have generally figured out the best ways to manage it. Again, because of the frequency with which I deal with this, I know it is not something dangerous or life-threatening. I must simply endure it. I have the best medications available outside of a hospital setting. And even more, I do not want to get a Reputation as a Drug Seeker. If that happens, it really is all over for me; I will never be taken seriously or stand a chance at finding Bard's Black Arrow and defeating Smaug. I have a wonderful doctor/doctors and have worked hard to establish a trusting relationship based on honesty. Without that I fear the thread I dangle from would snap entirely. All that to say I NEVER go to the hospital for a Smaug uproar.
But I was oh-so-tempted. I had taken every medication possible; tried every trick in my considerable arsenal. And still the pain roared through me, leaving me helpless and near mad with its intensity. I wracked my brain, thinking "What else can I do? Could anyone do? I have tried it all and it has not made a dent. Fucking Smaug!" But from the corner of my mind, the idea of the hospital dangled before me. And like the Snake whispering to Eve in the Garden of Eden, "They have even better drugs. They have Dilaudid. You've been on that before. I bet that could subdue Smaug; at the very least make him so punch-drunk he couldn't breathe his flame-thrower straight at your insides." I don't think a marooned man on a desert isle could have been more tempted by a fresh waterfall. But I didn't do any of that. Instead, i endured, as usual. And as usual, Smaug finally dozed off. But while he was on a rampage, I was completely and utterly useless. Beyond useless. Just curled in a fetal position, trying labor breathing techniques, trying not to scream, trying unsuccessfully not to throw up.
And this is what brings me to my deepest fear. If this were an occasional, few times a year occurrence, I could see me handling motherhood like any mother occasionally incapacitated by illness - it happens to the best of us. In fact Nate and I had care of my niece, E, during a Smaug rampage, and we handled it just fine. Nate stepped in beautifully where I couldn't. But Smaug wakes up and shreds my insides more than 1/2 the time. That's not fair to subject anyone to: not Nate, not me, not our child. I have always believed that Nate and I would make great parents. It is one of the fundamental beliefs I hold dear about myself - how I would be as a mother. But What IF, by some miracle we managed to have a child, by hook or by crook, with Smaug unresolved, I was too ill to be the mother I know I could be, the kind of mother I desperately long to be? And What IF a child, our child, suffered as a result? Could I ever live with this?
C.) This one goes back to my desire to experience pregnancy and motherhood. When Nate and I were first dating, I mean just barely dating, I had a few dreams that stood out. First, let me clarify that I almost NEVER remember my dreams. The fact that I even remembered the dreams was no minor feat. One was of his mother, who had passed away years before. She was with me, and showing me things about herself, things she loved, paintings she had painted, stories about herself. Nate was in it too, but working a job that I "knew" he had never done. It was a very friendly dream - I had the feeling that his mother was simply trying to introduce herself to me, sharing part of herself with me. I told Nate the "ridiculous" dream I had had, how it was a nice dream, but impossible to be true. He took me to the basement in his house and asked, "Was this the painting you saw in your dream?" With astonishment, I nodded. I said, "But it can't be true - you were in it, but you were working some job I know you never worked." He shook his head and admitted he had held that job years before. I was even able to accurately sketch the patch that had been on his uniform in my dream. I was stunned, and a little weirded out by the dream - had the "tone" of it not been so friendly, I would have been a lot more freaked.
Later that week I had another dream - this one was of Nate and I in the future. I saw our older selves - I was washing dishes in the sink of a strange house, Nate was next to me. I turned and casually asked Nate to go tell "Gracie" to go get her shoes on - we had to go or we were going to be late. He did, and in my dream I followed him down the hall of an unfamiliar ranch house, into a back bedroom. There was a girl of about 9 or 10, sitting on the edge of her bed, bent over tying shoe laces. As she straightened, I saw she had the same colored shoulder length hair as me, and Nate's eyes. As I stared, there was a "voice over" telling me about the girl. It said, "This is Gracie. Actually, her name is really Lorena Grace, but we call her Gracie - Lorena, after Nate's mother, and Grace because it was such an overwhelming act of God's grace that we were ever able to have a child at all." I tried to brush the dream off as ridiculous as well, but it stayed with me.
More recently, I have had dreams that I was pregnant. In each one, there was the sense that this was impossible, but incredibly, it was true. I was always in the 2nd trimester, a time I knew to generally be "safer" to actually believe in the viability of this pregnancy. In these dreams, I experienced the unprecedented joy of impending motherhood that I never allow myself to even imagine in my waking moments. It is such a piercing, aching, overflowing joy. Unparalleled by anything I have ever experienced on this earth, although there is a sense of fear, too. But the joy wins out. And in each. and. every. dream, the moment of most anticipated joy is the moment I reveal the pregnancy to Nate. To me, that is the pinnacle of joy - the sharing of this, the knowledge that I have been able to give this to Nate. I both love and hate these dreams. It is the only place I ever actually imagine pregnancy with the joy and fear it holds for me - the overcoming the impossible. It's a joy I have only ever experienced in these dreams - nothing in real life has come close, not even the joy of my wedding, when I thought I would explode with joy. But these dreams also mean I have to wake up to the realization that they are not true and not likely to come true. And I know the devastation and ache of empty arms and an empty heart. And worse, the awareness that this is something I cannot give Nate.
3.) Add a link at the bottom of your post to this URL giving a basic understanding of infertility: www.resolve.org/infertility101 and this URL giving the background of National Infertility Awareness Week (NIAW): www.resolve.org/takecharge.
4.) End your post with a new, positive “what if“–a best-case-scenario for you personally. What you hope to see happen–either for yourself or for someone else.
If I'm shooting for a "realistic," positive, "What IF", I guess it would be:
a.) "What IF we are able to defeat and bury Smaug, or at least subdue him to a more manageable, salamander sized issue? And no other major health issues raise their heads, at least not for another 40 years?
b.) What IF we are able to have a child of our own come into our lives? I cannot begin to imagine the joy possible.
c.) What IF the first two come true and I am able to be the kind of mother I dream of becoming? With allowances, of course, for being human.
d.) What IF WE are able to experience this, and Nate knows the joy of fatherhood - that we both know the joy of being the parents we long to be. And however it happens, I'm able to share in the moment with Nate when he realizes he's going to be a dad?
Put this way, do these positive What IFs seem too much to hope for??? I scare dare to even go there.
5.) Return here and add a permalink to your post to the Mr. Linky widget at the bottom of this post.
I'm past deadline and I can't find Mr. Linky. It doesn't matter if I'm able to be considered for the award, just being a part of this amazing project is beyond words.
OK, It's now 4:38 am and I'm trying to wrap this up. It seems somewhat disjointed and rambling to me - I definitely wouldn't say it's my best written post, but it's one of my most honest. Thanks, Mel for this amazing opportunity you're giving us to share in.
As most of you know, we just commemorated NIAW - National Infertility Awareness Week.
The brilliant Mel at Stirrup Queens has been at the forefront of leading a multi-part project, called What IF, which provides a collaboration and platform to increase awareness for this issue. During the first part of this project, participants were asked share their "What if questions" with regard to infertility on the comment section of Mel's post. What resulted was a breathtaking collaboration of the many facets of infertility. If you haven't checked it out already, I urge you to go do so. Don't be surprised if it's something you need to take in a bit at a time. Go ahead and take a look - I promise I'll wait.
It was a big step for me to add my comment because it was the first time I participated in anything like this; it was the first time I really felt a strong desire to be a part of this issue, to share my voice in this way. Honestly, being so new to the blogging scene, this was one of the first comments I've ever left. And it touched me that someone wanted to know what I felt and hoped and feared.
What IF Part 2
1. Pick/Tweak the category your "What IF" comment falls into:
Alright, so we're back to the issue of where exactly do I fit in in all this? I guess the closest category would be: How infertility impacted your “plans”/current choices/future decisions.
2. Go back to your blog and explore that “what if” in a post:
OK, so I had 3 What IFs:
a.) What IF we are somehow able to bring a child into our lives, but unable to find a treatment/cure for my debilitating health issues?
b.) What IF despite the deepest desires of my heart, this makes me an inadequate/bad mother?
c.)What IF I never know the joy of helping my husband, who has lost his family, become the incredible father I know he will be?
So in my last post, I'm glad I introduced you to Smaug, because he is really what the heart and soul of what my What IFs are about. When I thought about my fears regarding IF, initially my concerns ran the gamut voiced by many others, along the lines of what if we never have children, how will we cope, who will I be? And I think C runs along those lines. But when I dug deeper inside, I realized that my strongest fears were more about what if my deepest desires come true, but the health issues haven't been resolved. And, even worse, what if this makes me a incompetent mother?
A.) I think my plans and hopes over the past few years have run along the lines of "fix this medical issue, and then you'll be able to get pregnant, and/or have children." It has always been my foremost need to fix the health problem, which would then enable me to get pregnant. For many, many reasons there has always been a background concern about my ability to get/stay pregnant, but I couldn't even begin to tackle that issue unless I dealt with the health problem first.
Smaug is the latest in the series of health concerns, but he has taken first place and held that title for the past 4 years. Despite that, I have clung to the dream of getting pregnant with a tenacity that would amaze Olympic athletes. Or denial, whichever shoe fits on a given day. Our inability to defeat Smaug, or the secondary health problems, for that matter, have made that dream whither down to the barest spark. Ever see the movie "Apollo 13"? Remember the line where Tom Hanks says "It will take us accomplishing 4,017 (or some similar extreme number) steps to be able to make it home. Right now, we're on like step 9." That's how I feel. The number of things that would have to come together for me to be able to get pregnant and deliver a healthy baby are beyond staggering; it really would take a miracle. And yet, there's that tiny sliver of that bitch Hope that whispers "And yet, the Apollo 13 crew did make it home safe. . ."
But after the unsuccessful last surgery, even Hope had to listen when Logic said, "If this is what you want, it really will take Other Means." That point was solidly driven home to the extent that in a flurry of inspiration, I even wrote our "Dear Birth Mother" letter. Which for me, is a SERIOUS admission that me being able to "naturally" (I hate that expression with regard to this subject) have a baby really is not gonna happen. At least a part of me acknowledges that.
But with that partial acknowledgement came the awareness that it may be possible to have a child and still be dealing with these health issues. oh fuck. . .
So what if we're granted the deepest desires of my heart, but Smaug is still on a rampage???
And this brings me to the second What IF:
B.) What if Smaug and other health issues compromise my ability to be a "good" mother? I understand that every parent gets sick, has off days, etc. But, take, for example, this last go round with Smaug. I only had 4 "good days" between Smaug's rampages. This last one was devastating. Sometimes Smaug awakens slowly, and builds to a roaring crescendo of agony. But this time, he was awakened at gale force. And I was completely flattened by it. I came within a whisper of waking Nate and asking Him to take me to the ER. I NEVER do that. Because I have experienced it so many times, I figure I have generally figured out the best ways to manage it. Again, because of the frequency with which I deal with this, I know it is not something dangerous or life-threatening. I must simply endure it. I have the best medications available outside of a hospital setting. And even more, I do not want to get a Reputation as a Drug Seeker. If that happens, it really is all over for me; I will never be taken seriously or stand a chance at finding Bard's Black Arrow and defeating Smaug. I have a wonderful doctor/doctors and have worked hard to establish a trusting relationship based on honesty. Without that I fear the thread I dangle from would snap entirely. All that to say I NEVER go to the hospital for a Smaug uproar.
But I was oh-so-tempted. I had taken every medication possible; tried every trick in my considerable arsenal. And still the pain roared through me, leaving me helpless and near mad with its intensity. I wracked my brain, thinking "What else can I do? Could anyone do? I have tried it all and it has not made a dent. Fucking Smaug!" But from the corner of my mind, the idea of the hospital dangled before me. And like the Snake whispering to Eve in the Garden of Eden, "They have even better drugs. They have Dilaudid. You've been on that before. I bet that could subdue Smaug; at the very least make him so punch-drunk he couldn't breathe his flame-thrower straight at your insides." I don't think a marooned man on a desert isle could have been more tempted by a fresh waterfall. But I didn't do any of that. Instead, i endured, as usual. And as usual, Smaug finally dozed off. But while he was on a rampage, I was completely and utterly useless. Beyond useless. Just curled in a fetal position, trying labor breathing techniques, trying not to scream, trying unsuccessfully not to throw up.
And this is what brings me to my deepest fear. If this were an occasional, few times a year occurrence, I could see me handling motherhood like any mother occasionally incapacitated by illness - it happens to the best of us. In fact Nate and I had care of my niece, E, during a Smaug rampage, and we handled it just fine. Nate stepped in beautifully where I couldn't. But Smaug wakes up and shreds my insides more than 1/2 the time. That's not fair to subject anyone to: not Nate, not me, not our child. I have always believed that Nate and I would make great parents. It is one of the fundamental beliefs I hold dear about myself - how I would be as a mother. But What IF, by some miracle we managed to have a child, by hook or by crook, with Smaug unresolved, I was too ill to be the mother I know I could be, the kind of mother I desperately long to be? And What IF a child, our child, suffered as a result? Could I ever live with this?
C.) This one goes back to my desire to experience pregnancy and motherhood. When Nate and I were first dating, I mean just barely dating, I had a few dreams that stood out. First, let me clarify that I almost NEVER remember my dreams. The fact that I even remembered the dreams was no minor feat. One was of his mother, who had passed away years before. She was with me, and showing me things about herself, things she loved, paintings she had painted, stories about herself. Nate was in it too, but working a job that I "knew" he had never done. It was a very friendly dream - I had the feeling that his mother was simply trying to introduce herself to me, sharing part of herself with me. I told Nate the "ridiculous" dream I had had, how it was a nice dream, but impossible to be true. He took me to the basement in his house and asked, "Was this the painting you saw in your dream?" With astonishment, I nodded. I said, "But it can't be true - you were in it, but you were working some job I know you never worked." He shook his head and admitted he had held that job years before. I was even able to accurately sketch the patch that had been on his uniform in my dream. I was stunned, and a little weirded out by the dream - had the "tone" of it not been so friendly, I would have been a lot more freaked.
Later that week I had another dream - this one was of Nate and I in the future. I saw our older selves - I was washing dishes in the sink of a strange house, Nate was next to me. I turned and casually asked Nate to go tell "Gracie" to go get her shoes on - we had to go or we were going to be late. He did, and in my dream I followed him down the hall of an unfamiliar ranch house, into a back bedroom. There was a girl of about 9 or 10, sitting on the edge of her bed, bent over tying shoe laces. As she straightened, I saw she had the same colored shoulder length hair as me, and Nate's eyes. As I stared, there was a "voice over" telling me about the girl. It said, "This is Gracie. Actually, her name is really Lorena Grace, but we call her Gracie - Lorena, after Nate's mother, and Grace because it was such an overwhelming act of God's grace that we were ever able to have a child at all." I tried to brush the dream off as ridiculous as well, but it stayed with me.
More recently, I have had dreams that I was pregnant. In each one, there was the sense that this was impossible, but incredibly, it was true. I was always in the 2nd trimester, a time I knew to generally be "safer" to actually believe in the viability of this pregnancy. In these dreams, I experienced the unprecedented joy of impending motherhood that I never allow myself to even imagine in my waking moments. It is such a piercing, aching, overflowing joy. Unparalleled by anything I have ever experienced on this earth, although there is a sense of fear, too. But the joy wins out. And in each. and. every. dream, the moment of most anticipated joy is the moment I reveal the pregnancy to Nate. To me, that is the pinnacle of joy - the sharing of this, the knowledge that I have been able to give this to Nate. I both love and hate these dreams. It is the only place I ever actually imagine pregnancy with the joy and fear it holds for me - the overcoming the impossible. It's a joy I have only ever experienced in these dreams - nothing in real life has come close, not even the joy of my wedding, when I thought I would explode with joy. But these dreams also mean I have to wake up to the realization that they are not true and not likely to come true. And I know the devastation and ache of empty arms and an empty heart. And worse, the awareness that this is something I cannot give Nate.
3.) Add a link at the bottom of your post to this URL giving a basic understanding of infertility: www.resolve.org/infertility101 and this URL giving the background of National Infertility Awareness Week (NIAW): www.resolve.org/takecharge.
4.) End your post with a new, positive “what if“–a best-case-scenario for you personally. What you hope to see happen–either for yourself or for someone else.
If I'm shooting for a "realistic," positive, "What IF", I guess it would be:
a.) "What IF we are able to defeat and bury Smaug, or at least subdue him to a more manageable, salamander sized issue? And no other major health issues raise their heads, at least not for another 40 years?
b.) What IF we are able to have a child of our own come into our lives? I cannot begin to imagine the joy possible.
c.) What IF the first two come true and I am able to be the kind of mother I dream of becoming? With allowances, of course, for being human.
d.) What IF WE are able to experience this, and Nate knows the joy of fatherhood - that we both know the joy of being the parents we long to be. And however it happens, I'm able to share in the moment with Nate when he realizes he's going to be a dad?
Put this way, do these positive What IFs seem too much to hope for??? I scare dare to even go there.
5.) Return here and add a permalink to your post to the Mr. Linky widget at the bottom of this post.
I'm past deadline and I can't find Mr. Linky. It doesn't matter if I'm able to be considered for the award, just being a part of this amazing project is beyond words.
OK, It's now 4:38 am and I'm trying to wrap this up. It seems somewhat disjointed and rambling to me - I definitely wouldn't say it's my best written post, but it's one of my most honest. Thanks, Mel for this amazing opportunity you're giving us to share in.
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