My last several posts have had at least mentions of the fact that I have severe endometriosis, and have had several surgeries related to it in the last two years. I have talked about the impacts that the illness, treatments, and procedures have had on my life. As it stands, I am currently taking a break from pursuing my fashion degree, had to go from a pretty decent job to one that pays less but are more than willing to work with my physical capabilities, and came very close to backing out of the Summer in the City show back in June (I didn't). I also have had to pass or cancel on other events due to my health, including joining my husband for the annual SeaDog Nights and Gypsy Carnival pirate festival in Lebanon, Oregon, this past July. Being several months past surgery, being on a harsh treatment for the endometriosis, the nerve/back pain that forced me to leave my job...we just didn't think the time was right. 2016 is my year, though, starting with Matt wanting to treat a related event in March as my debutante ball.
One of my biggest obstacles with this, however, is costuming. I've already been having to deal with the pain in the ass of costuming while having issues with my weight. But now I have to figure in bloating, back/hip pain, swelling, medications, even surgery. Even now, eight months after surgery, certain items of clothing get worn rarely or not at all because they sit uncomfortably on one of my incision sites, and the nerve endings have yet to return normal feeling to my lower abdomen. I discovered at a friend's Halloween wedding that my underbust corset was the only thing keeping me standing without having to resort to a cane. Oh, and then there's the occasional need to use a cane now. Leggings and loose tops have become wardrobe staples. Heels can't be worn for very long if I'm constantly on the move. But there aren't many resources out there for cosplaying while broken. I mean, there's this one chick who's been putting herself out there, but how she addresses having to work her costumes around tubes and a wheelchair doesn't necessarily reflect how I need to address my own needs. I've already decided to work with higher waistlines to accommodate my belly on crappy days, but will still work with belts and corsets. I'm looking at designing my corsets to be adjustable to my abdominal status at the time of wear. Sleeves and skirts will have to be able to be restrained in the event I need to bust out the cane. And then there's the cane. The one I bought from the store for fifteen bucks to help me get back on my feet faster after my latest surgery certainly isn't piratey or steampunky, nor is it portable for when it's not in use, but on-hand just in case. I need to work in a way to have my pain meds on me and be able to safely take them when needed. I may look at maternity fashion in the 18th and 19th centuries for ideas, too.
I will, of course, share my findings and results here. And any suggestions are more than welcome.
Thursday, November 19, 2015
Monday, November 9, 2015
A girl and her car (and still a better love story than Twilight)
This is my Ninja Babe (derived from letter combinations in the VIN). She was my first car. We've been through a lot together in eight years. We've been throughout Washington and Oregon together. She's seen home and employment changes, snow and ice storms, trips to the vet (cats), lots of time at various human medical facilities, and now even has a kid who tells his auntie when it's time to clean her car. We've participated in fashion and burlesque shows. She even broke down on me in the middle of the night, in melting snow, in a small town off a back road highway. She's been broken into, hit by unknown assailants in parking lots, rear ended by over-eager people in drive-thrus, and vandalized with messages and mashed potatoes. Bitch even burned me.
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| Waiting for a tow truck when it's been snowing is a bitch. |
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| I still don't know. |
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| \m/ |
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| College kids threw mashed potatoes on my car. |
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| From the radiator. Because I apparently AM capable of being a dumbass. |
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| An amazing child who has given my life new meaning. <3 |
We've had our bad times. She was there when dire circumstances forced me to give up some of my cats. She's taken me to the hospital when only morphine would help. She's seen some of the rockiest points in my marriage. And I have a love/hate relationship with her. She's 23. This means parts aren't as easy or cheap to come by. Especially since she's a BMW. She requires repairs and maintenance more often than her newer counterparts. But I love my M3 taillights, my aftermarket headlights, and my Magnaflow. And I love how even with everything that's wrong with her, she's still there for me. She just keeps on going.
And that's what brings me to the reason why I'm writing this. After all, I'm pretty sure no one really cares about my car nearly as much as I do. But look at her. She's worn, chipped, rusted, falling apart. Parts of her are MacGuyvered (like the screwdriver in my battery). I have three different rims. One of my front blinkers is held in place with a Toothless bandaid and duct tape. My interior is destroyed. But these are things that I've discovered that I love about her.
I've heard that cars--like pets--tend to have the personality traits of their owners. Look at me. I'm a mess. I have an incurable chronic illness that requires lots of medical attention. I have chronic pain in my nerves and joints that is continuing to worsen. I've had two surgeries, and will have more. At 32, I'm worn out, busted, broken, falling apart. Yet I just keep going. Ninja Babe and I are one and the same. I will be incredibly emotional when we finally part. My husband likes to say that she's his car, I'm just the only one who can legally drive her. But I'd have to say that she is definitely MY car (even if the disabled veteran plates are his!).
Thursday, June 25, 2015
Endometriosis: It sucks to have it, and this is why.
Endometriosis is a disease that affects roughly 176 million women worldwide. Most of them have no idea that they have this disease for a variety of reasons, and usually don't get diagnosed until they are in their thirties.
Endometriosis is an enigma. No one knows the cause, or the risk factors. There is no way to prevent or cure this disease. It is one of the leading causes of infertility in women. It can cause debilitating pain, or none at all. A woman with Stage IV will be willing to do anything to stop the pain, while another woman with Stage IV has no idea she even has it because she feels no pain, while another woman will have Stage I and be in as much pain as the first woman with Stage IV. Why? Because, somehow, some of that lining that your body creates inside the uterus to prepare to welcome a fertilized ovum and bleeds out during your period if you didn't get pregnant somehow manages to leave the uterus and implant on the outside of the uterus, the ovaries, intestines, Fallopian tubes, bladder, sometimes even the heart, lungs, and spine. Some women get painful cysts on the ovaries called endometriomas, or "chocolate" cysts (called that because the blood inside looks like chocolate sauce). Pain is just a way of life for most women who suffer from this disease.
I am one of those women. My periods started becoming intermittently unbearable when I was 17. I was always told that it was normal. Later, I was was told that the cause for the pain I was feeling with certain sexual positions was because I had a tilted uterus (I have not confirmed this with my gynecologist). In my late twenties, it got worse. But I only resorted to things like Midol because I'd always been told that painful cramps were normal. Then the pain got bad enough that my sister pried herself away from her four and a half month old son to come pick me up at midnight from an event my husband and I were vending at on New Year's Eve. My next period sent me to the emergency room, where they got me pelvic examed and ultrasounded the minute I said that I was in severe pain, on my period, and that I had an immediate family history of ovarian cysts. They told me there was evidence that I had an ovarian cyst that had ruptured, but that they couldn't actually say for sure, because ER doctors aren't allowed to diagnose, just treat. Not having insurance, she told me to go to Planned Parenthood, tell them that I may have endometriosis, and start taking a progesterone-only contraceptive. Which seemed to help. When the Affordable Care Act went into full effect, I learned that I qualified for health insurance through the state, so I jumped on it, and made an appointment with the OB/GYN that had delivered my nephew. After several inconclusive scans and tests, I was scheduled for a laparoscopy on March 14, 2008 (refer back to my post about Metamorphose last year). He didn't find anything to say that, yes, I have endometriosis, but he didn't find anything to rule it out, either. Just some scar tissue connecting my intestines to my uterus. He theorized that the birth control I'd been on did its job quite thoroughly if I did, in fact, have the disease.
Well, I wanted to know for sure. So I opted to discontinue my birth control to see if the pain came back. And come back, it did. My cramping started to get worse over the summer. In September, I started to feel a dull ache in my left side. At the beginning of February, the pain was so bad that I ran to the ER again...only to be dismissed as just being constipated. Which I was, I won't deny that. And I took steps to avoid another round of menstrual back-up. So when I ran back to the ER at the beginning of March, I was taken a little more seriously. As in, a prescription for Norco and a referral to see a third party imaging center for a pelvic ultrasound on the 17th, with a follow-up with my gynecologist the week after to review the results. Well, that never happened because the pain got worse. Much worse. I was back in the ER on March 11th, and I finally got a doctor who took some initiative, did a pelvic exam, and sent me up to the hospital's radiology department for an ultrasound, where they almost immediately found a 6 cm cyst on my left ovary. After studying the images and consulting with my gynecologist, I was sent home with more Norco, and orders to follow-up with my gynecologist ASAP. I saw him the next afternoon, and was scheduled for another laparoscopy on March 16th. I had to go on medical leave that weekend, because whether or not I took enough pain medicine to deal with the pain, I was a liability at work. I ran out of pain pills on Sunday morning. I knew that I couldn't hold out until I checked in to the hospital the next morning, so the on-call doctor for my gynecologist's office admitted me into the hospital Sunday night. And let me tell you, when you're in so much pain that a double dose of Norco isn't doing shit, hydromorphone is a hell of a godsend.
I awoke from my surgery the next afternoon to discover that my laparoscopy had been converted into a laparotomy. When he came to check in on me Tuesday morning, his face said it all. My gynecologist said that what he saw was "impressive," and was possibly one of the five worst cases he'd seen in almost twenty years in medicine. Fun!
On April 21st, I had my first Lupron shot. This is a hormone suppressant, and it is also used to treat advanced prostate, breast, ovarian, and endometrial cancers. I know it's supposed to suck the first couple of weeks, but the sick never fully went away. I had an agonizing period at the beginning of May. Work started taking a physical toll on me because my hips and back started hurting. My primary care doctor strongly recommended that I leave that job and find less physical work. Because ten and a half hours of doing circles around a rather large building and rarely not moving was just not helping. So, my last day there was May 24th. I enjoyed my job, I enjoyed the people, but I just couldn't physically handle it anymore.
Now, how do you look for a job with chronic illness and chronic pain? You're damned if you disclose before you're hired, and damned if you wait until you're hired. I opted against going back to work another summer in the University of Oregon dorms. Way too physical, and not enough air conditioning. I screwed my ankle up pretty bad last summer because there also just aren't enough elevators. Then there's the meningococcal disease that's plagued campus this last school year. Did I mention that endometriosis is also an autoimmune disease? If the meningococcal disease killed a perfectly healthy student athlete earlier this year, what the hell would it do to someone with a shitty immune system? Nope. Fuck that noise. Luckily, I have a lady at a staffing agency who is doing her damnedest to help me find a position through her company that suits my physical limitations. And there's a lady that I'm working with at the Oregon employment department who gave me a whole list of resources to help me, as well.
Oh, I almost forgot! When I announced my participation in this year's Summer in the City fashion show, I also announced that I would be auctioning the model looks to benefit the Endometriosis Foundation of America. Not all of it, mind you; I have the listing fees to pay, and gas and cat food to buy. It's not much, but in my own special way, I want to help raise awareness for this shitty disease that I've been stuck with. You can find the eBay links at the end of this post, as well as an Etsy listing for made-to-order endo awareness earrings.
I've been dealing with this disease in some fashion since I was a teen. Now, at 31, I know that Stage IV endometriosis is a major player in my life. I will use my experiences to help other women find their answers. I have a new purpose in life. This disease will NOT defeat me. My scars are trophies of battles won. My less-than-ideal experience with Lupron will make for a glorious war story. I will take this disease, and make it my bitch. Qapla'!
Endometriosis is an enigma. No one knows the cause, or the risk factors. There is no way to prevent or cure this disease. It is one of the leading causes of infertility in women. It can cause debilitating pain, or none at all. A woman with Stage IV will be willing to do anything to stop the pain, while another woman with Stage IV has no idea she even has it because she feels no pain, while another woman will have Stage I and be in as much pain as the first woman with Stage IV. Why? Because, somehow, some of that lining that your body creates inside the uterus to prepare to welcome a fertilized ovum and bleeds out during your period if you didn't get pregnant somehow manages to leave the uterus and implant on the outside of the uterus, the ovaries, intestines, Fallopian tubes, bladder, sometimes even the heart, lungs, and spine. Some women get painful cysts on the ovaries called endometriomas, or "chocolate" cysts (called that because the blood inside looks like chocolate sauce). Pain is just a way of life for most women who suffer from this disease.
I am one of those women. My periods started becoming intermittently unbearable when I was 17. I was always told that it was normal. Later, I was was told that the cause for the pain I was feeling with certain sexual positions was because I had a tilted uterus (I have not confirmed this with my gynecologist). In my late twenties, it got worse. But I only resorted to things like Midol because I'd always been told that painful cramps were normal. Then the pain got bad enough that my sister pried herself away from her four and a half month old son to come pick me up at midnight from an event my husband and I were vending at on New Year's Eve. My next period sent me to the emergency room, where they got me pelvic examed and ultrasounded the minute I said that I was in severe pain, on my period, and that I had an immediate family history of ovarian cysts. They told me there was evidence that I had an ovarian cyst that had ruptured, but that they couldn't actually say for sure, because ER doctors aren't allowed to diagnose, just treat. Not having insurance, she told me to go to Planned Parenthood, tell them that I may have endometriosis, and start taking a progesterone-only contraceptive. Which seemed to help. When the Affordable Care Act went into full effect, I learned that I qualified for health insurance through the state, so I jumped on it, and made an appointment with the OB/GYN that had delivered my nephew. After several inconclusive scans and tests, I was scheduled for a laparoscopy on March 14, 2008 (refer back to my post about Metamorphose last year). He didn't find anything to say that, yes, I have endometriosis, but he didn't find anything to rule it out, either. Just some scar tissue connecting my intestines to my uterus. He theorized that the birth control I'd been on did its job quite thoroughly if I did, in fact, have the disease.
Well, I wanted to know for sure. So I opted to discontinue my birth control to see if the pain came back. And come back, it did. My cramping started to get worse over the summer. In September, I started to feel a dull ache in my left side. At the beginning of February, the pain was so bad that I ran to the ER again...only to be dismissed as just being constipated. Which I was, I won't deny that. And I took steps to avoid another round of menstrual back-up. So when I ran back to the ER at the beginning of March, I was taken a little more seriously. As in, a prescription for Norco and a referral to see a third party imaging center for a pelvic ultrasound on the 17th, with a follow-up with my gynecologist the week after to review the results. Well, that never happened because the pain got worse. Much worse. I was back in the ER on March 11th, and I finally got a doctor who took some initiative, did a pelvic exam, and sent me up to the hospital's radiology department for an ultrasound, where they almost immediately found a 6 cm cyst on my left ovary. After studying the images and consulting with my gynecologist, I was sent home with more Norco, and orders to follow-up with my gynecologist ASAP. I saw him the next afternoon, and was scheduled for another laparoscopy on March 16th. I had to go on medical leave that weekend, because whether or not I took enough pain medicine to deal with the pain, I was a liability at work. I ran out of pain pills on Sunday morning. I knew that I couldn't hold out until I checked in to the hospital the next morning, so the on-call doctor for my gynecologist's office admitted me into the hospital Sunday night. And let me tell you, when you're in so much pain that a double dose of Norco isn't doing shit, hydromorphone is a hell of a godsend.
I awoke from my surgery the next afternoon to discover that my laparoscopy had been converted into a laparotomy. When he came to check in on me Tuesday morning, his face said it all. My gynecologist said that what he saw was "impressive," and was possibly one of the five worst cases he'd seen in almost twenty years in medicine. Fun!
On April 21st, I had my first Lupron shot. This is a hormone suppressant, and it is also used to treat advanced prostate, breast, ovarian, and endometrial cancers. I know it's supposed to suck the first couple of weeks, but the sick never fully went away. I had an agonizing period at the beginning of May. Work started taking a physical toll on me because my hips and back started hurting. My primary care doctor strongly recommended that I leave that job and find less physical work. Because ten and a half hours of doing circles around a rather large building and rarely not moving was just not helping. So, my last day there was May 24th. I enjoyed my job, I enjoyed the people, but I just couldn't physically handle it anymore.
Now, how do you look for a job with chronic illness and chronic pain? You're damned if you disclose before you're hired, and damned if you wait until you're hired. I opted against going back to work another summer in the University of Oregon dorms. Way too physical, and not enough air conditioning. I screwed my ankle up pretty bad last summer because there also just aren't enough elevators. Then there's the meningococcal disease that's plagued campus this last school year. Did I mention that endometriosis is also an autoimmune disease? If the meningococcal disease killed a perfectly healthy student athlete earlier this year, what the hell would it do to someone with a shitty immune system? Nope. Fuck that noise. Luckily, I have a lady at a staffing agency who is doing her damnedest to help me find a position through her company that suits my physical limitations. And there's a lady that I'm working with at the Oregon employment department who gave me a whole list of resources to help me, as well.
Oh, I almost forgot! When I announced my participation in this year's Summer in the City fashion show, I also announced that I would be auctioning the model looks to benefit the Endometriosis Foundation of America. Not all of it, mind you; I have the listing fees to pay, and gas and cat food to buy. It's not much, but in my own special way, I want to help raise awareness for this shitty disease that I've been stuck with. You can find the eBay links at the end of this post, as well as an Etsy listing for made-to-order endo awareness earrings.
I've been dealing with this disease in some fashion since I was a teen. Now, at 31, I know that Stage IV endometriosis is a major player in my life. I will use my experiences to help other women find their answers. I have a new purpose in life. This disease will NOT defeat me. My scars are trophies of battles won. My less-than-ideal experience with Lupron will make for a glorious war story. I will take this disease, and make it my bitch. Qapla'!
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