I haven't had a very good week this week and I've been afraid to write for fear of self-declaring just how negative and psychotic I can be. It was supposed to be a good week where I have already bounced back to my positive self after my horrible cycle and instead, I am exhausted, cranky, not sleeping, and I have had cramps for going on a week now. I should not have cramps for a few more weeks so I don't know what is going on but I suspect I'm having difficulty ovulating or I double-ovulated and my body is going to either skip a cycle or have another one before one is due. If you're a cyster, you'll know of what I speak as this happens from time to time (if you actually HAVE your cycles, which a lot of cysters do not.)
In addition, I've had horrible restless legs with my legs cramping all night long. Whilst most nights, I've been lucky to get four hours of sleep, there have been a couple of nights in the last three weeks where I've had that catch up night of sleep where I slept so dead I had very little recollection of anything at all but wake up feeling like someone beat me up in the night with bags of rubber balls. I can barely lift my head off the pillow let alone get up and one night, I think I even walked in my sleep. Since Narcolepsy runs in my family, this wouldn't exactly surprise me, but I've never been afflicted before. My eyes and skin have become so dry and I keep getting dizzy, have vision disturbances, and bad headaches. I've been eating pretty healthy excepting Happy Hour and my best friend's birthday so I know it's not blood sugar. So on Thursday, I deduced two things, one - that I should call my hematologist immediately and demand blood work, and two, that I should, if it's time for treatment again, finally give the IUD called Mirena a try to see if I can get the bleeding to stop and put off having a hysterectomy for a bit if I can help it.
So, blood now drawn, I entered my weekend hoping my Ferritin levels reach whatever level my insurance company says I have to be at to get treatment. I will find out early next week during one of the busiest weeks in the year at work and will likely have to hold out until after that week to get treatment since I can't miss work during this week. Joy.
So I had another weekend feeling disconnected from self. I feel bad as even the alcohol didn't sustain my brief interlude with alertness on Saturday for my best friend's birthday and as I sat there in the bar with the noise level increasing, there was a part of my brain fixated on the TV and another part screaming in agony. I could hardly focus on any conversation and I just felt so withdrawn from my own life - like I was sitting there as a ghost trying to listen in to the world of the living. I've never been good with overly loud environments but I notice that anemia increases sensory problems as well. It doesn't cure the sensory problems for me all the time, I still have problems when I'm on my cycles, but the rest of the time, I'm so much better. I hope my best friend isn't upset I wasn't more talkative. I will make it up to her.
It's almost family dinner time and I'm going to see what I can do to muster some attentiveness for my sibs and my nephew and try to enjoy the rest of the day before the onslaught that next week will be. I hope my inner self doesn't pull itself all up inside like a tightly wound ball of twine. I will force 'me' to stay out and alert for as long as possible.
So, that's all I got for today. I hope it's treatment time and that I don't have to wait any longer or I sense there will be a freakishly awful enraged sob fest. Oh well, at least I'm prepared for it.
Sunday, March 30, 2014
Monday, March 24, 2014
So Repressed We Can't Even Enjoy Our Own Food Orgasm
Ever notice how every time you dine - be it with your family or with a group of friends, whether you're getting anxious to taste again the sheer perfection of your Mother's home made pizza or what you ordered at the newest and hippest restaurant, there's always someone who has to try and count the carbs, or wince at how much fat they're eating? I know many have equated food with sex and you'll know you've done it when you groan aloud after a bite of a perfectly grilled filet mignon, or sucked a little long on your finger after scraping up that last bite of Tuxedo Chocolate Cheesecake at The Cheesecake Factory. You don't have to say anything. I've had the mouth orgasm and so have you. You can deny your pleasure, but we all know you're lying.
Still, when you are sitting there after weeks of pining, finally about to feed yourself the best fry in the city dipped in white truffle aioli and someone mentions carbs, it's akin to when your lover brings up his/her ex lying there naked in bed with you. You don't invite someone into the bed that isn't even in the room. It's a violation of intimacy, a rude awakening most foul. How do you concentrate on your orgasm or anyone else's after THAT? You can't. It's ruined. So is the French fry... with the white truffle aioli... the one you waited weeks to get to. Did I mention the white truffle aioli? White truffle? You just DON'T ruin white truffle aioli just like you don't intentionally ruin sex.
So what is behind a person's desire to ruin their own dinner? Is it guilt or is it self-flagellation? Is the person just feeling that horrible about indulging or ruining their diet? Does it make the food more delicious to them to be reminded it's naughty? Or is it a quiet, manipulative scolding to the fat person or a Machiavellian form of emotional abuse? I don't really feel I'm being scolded by my friends and loved ones, but I do feel emotionally abused at every turn. Why do we as a people trash every meal we eat with negative feelings and guilt? Does it really make us feel better? Maybe it does for some folks. I don't feel better though, I feel worse. I feel interrupted. Pleasure and fun and camaraderie and sharing just went out the window. I was laughing and now I'm quietly counting everything I ate the whole last week to justify the fries I've waited weeks to have. I'm reminded of my fatness and now I'm depressed and angry, I try to shake it off by eating more fries than I might have originally because now I'm feeding an angry self - that hole that is never filled. Now I'm abusing myself.
I was raised in a culture where food is everything and sitting down to have that communal meal with friends or family or both, is a very special and very sacred thing. Just like sex. Yes, even sex driven purely by lust and not necessarily of a romantic sort. It's still takes two, therefore you're sharing - your communing, you are being intimate and you are focusing on the experience. You don't stop in the middle and talk about how you're going to go to confession afterwards. You don't interrupt the exploration. So why do we do it when we're dining?
I don't know all the answers, I just know it's unhealthy. I don't want to be reminded every time I eat that I'm fat. I want to explore and taste and experience and moan aloud or sigh contentedly. I often eat lunch alone as it's the only surefire guarantee no one will say 'carbs' or 'fat' while I'm eating a salad or god-forbid a gluten free crepe. I can sigh contentedly as I sip on my tea or coffee and read a book.
So, in closing I would like to say... Just as I know you wouldn't stop in the middle of a screaming crescendo to discuss STDs or pregnancy, please remember this... If you aren't eating carbs or don't want carbs, or feel guilty because you ate some bloody effing carbs, please don't bring it to the table.
Oh, and please leave the word 'fat' out of all conversation. Some oils are good for us cysters as we need those fats for proper hormone synthesis and even if we are splurging on some bad fat that night, leave us alone or we'll bring up all those lovers you took into your bed that you probably shouldn't have.
Oh. Oh. Oh. Mmmmmmmmmm!
Eat well. Love well. Good Night darlings!!!
Still, when you are sitting there after weeks of pining, finally about to feed yourself the best fry in the city dipped in white truffle aioli and someone mentions carbs, it's akin to when your lover brings up his/her ex lying there naked in bed with you. You don't invite someone into the bed that isn't even in the room. It's a violation of intimacy, a rude awakening most foul. How do you concentrate on your orgasm or anyone else's after THAT? You can't. It's ruined. So is the French fry... with the white truffle aioli... the one you waited weeks to get to. Did I mention the white truffle aioli? White truffle? You just DON'T ruin white truffle aioli just like you don't intentionally ruin sex.
So what is behind a person's desire to ruin their own dinner? Is it guilt or is it self-flagellation? Is the person just feeling that horrible about indulging or ruining their diet? Does it make the food more delicious to them to be reminded it's naughty? Or is it a quiet, manipulative scolding to the fat person or a Machiavellian form of emotional abuse? I don't really feel I'm being scolded by my friends and loved ones, but I do feel emotionally abused at every turn. Why do we as a people trash every meal we eat with negative feelings and guilt? Does it really make us feel better? Maybe it does for some folks. I don't feel better though, I feel worse. I feel interrupted. Pleasure and fun and camaraderie and sharing just went out the window. I was laughing and now I'm quietly counting everything I ate the whole last week to justify the fries I've waited weeks to have. I'm reminded of my fatness and now I'm depressed and angry, I try to shake it off by eating more fries than I might have originally because now I'm feeding an angry self - that hole that is never filled. Now I'm abusing myself.
I was raised in a culture where food is everything and sitting down to have that communal meal with friends or family or both, is a very special and very sacred thing. Just like sex. Yes, even sex driven purely by lust and not necessarily of a romantic sort. It's still takes two, therefore you're sharing - your communing, you are being intimate and you are focusing on the experience. You don't stop in the middle and talk about how you're going to go to confession afterwards. You don't interrupt the exploration. So why do we do it when we're dining?
I don't know all the answers, I just know it's unhealthy. I don't want to be reminded every time I eat that I'm fat. I want to explore and taste and experience and moan aloud or sigh contentedly. I often eat lunch alone as it's the only surefire guarantee no one will say 'carbs' or 'fat' while I'm eating a salad or god-forbid a gluten free crepe. I can sigh contentedly as I sip on my tea or coffee and read a book.
So, in closing I would like to say... Just as I know you wouldn't stop in the middle of a screaming crescendo to discuss STDs or pregnancy, please remember this... If you aren't eating carbs or don't want carbs, or feel guilty because you ate some bloody effing carbs, please don't bring it to the table.
Oh, and please leave the word 'fat' out of all conversation. Some oils are good for us cysters as we need those fats for proper hormone synthesis and even if we are splurging on some bad fat that night, leave us alone or we'll bring up all those lovers you took into your bed that you probably shouldn't have.
Oh. Oh. Oh. Mmmmmmmmmm!
Eat well. Love well. Good Night darlings!!!
Wednesday, March 19, 2014
That Vital Life Essence
I met one of my best friends for coffee the other night. I always love our coffee outings because I like to have real conversation and our conversation has always been real. I would protect all my friends anonymity but this particular friend and I have one of those unique friendships that sprung between two people who came from different cultures and backgrounds and who realized quickly through trying to understand each other, that we never had to be anything we previously were for other people or with other people with one another. I learned more about what her culture expected of her and who she felt she had to be and she was equally curious about me and my culture, etc. Our unique friendship started when we started learning about each other and asking all the frank questions we just had to know the answers to and we quickly learned to shed all pretense and just fire away.
My friend has never been the type of person to be defeated by things easily or to let life get her down so much and she's always been peppy and friendly and just fun. The last couple of years, she's been letting life get to her (and people,) and it's just not like her to be this way. Myself and some mutual friends of ours (other cysters or folks with similar health issues,) begged her to get her iron levels checked as we had recently learned from what happened to us, how Iron Deficiency could impact every facet of life. She said she would check and so I was surprised when we were leaving and she said her doctor gave her these giant horse supplements and told her that her iron was low. Actually, I wanted to beat her up for not telling me sooner but she forgot. Forgetfulness is one of the biggest symptoms of iron deficiency. In fact, if you Google 'iron deficiency and ADHD,' you'll find some scientific journal articles connecting the two. Could this be behind the rise in adult ADHD diagnoses - especially amongst women? You do the math.
I wanted to spill all I knew about this subject but she had to leave and so I will have to content myself with the knowledge that she might potentially read my blog - especially if I tell her I was talking about her. Hopefully she won't kill me. So, I will tell my story here to all of you.
Back in February of 2011, I took a diet drug I never should have taken and I began to suffer from severe insomnia. It went on for months and by June, I had reached a place of severe debilitation. I was lucky if I slept for 3 hours a night. If I took antihistamines, I might get 5. On the weekends, I would double-up and hope to get 7. Some nights, no matter what I took, I would just lie there stuck in my head with myself. Doctors had no suggestions for me and so I decided to work with a Naturopathic Nutritionist who cost a fortune but ran a lot of tests. Way more than my doctors ever ran. I found out a lot about myself. There were two tests that he ran that were interesting. He tested Iron in two forms - circulating and storage (called Ferritin,) and also tested Vitamin D in the same fashion. I found out that my circulating Iron was normal but my Iron storage (Ferritin) was getting low. He explained that when you're circulating Iron looks normal and someone complains of fatigue, that doctors need to check Ferritin as the human body will rob from internal iron stores in the liver, pancreas, and bone marrow to keep iron in the bloodstream as it's needed to make hemoglobin. Hemoglobin is what ferries oxygen from the lungs to the rest of the body. My Nutritionist also tested Vitamin D and we discovered that while my circulating levels of Vitamin D were high, my internal Vitamin D storage was really low and that meant that I wasn't absorbing all the Vitamin D I ingested and that could cause toxicity. He advised instead that I get more sunlight. (That will be a topic for ANOTHER blog.)
I worked with this Nutritionist until I couldn't afford to pay him anymore and then I also had to go back to work. I slept a little better initially from the change to a borderline Vegan, very whole foods, non dairy, non gluten, non egg, non soy diet but after the initial ten pounds of water weight was gone, I began to build up exercise and only lost another three pounds. I also started not sleeping again and I would just cry at all the things I couldn't do anymore because of the dietary restrictions. No more drinking with my friends for Happy Hour. No more trying new restaurants unless they had gluten free options. No more tea and crumpets with the girls. No more wine and cheese tastings. Beer tastings. That was like a death blow to the gut. I knew that I would have to keep to that diet forever and I knew while I was sitting there sobbing through a Sargento cheese commercial (True Story,) I wouldn't be successful. I always love how they call it a lifestyle change. It's not. It's a 'become someone with a different life' change. Say goodbye to YOUR life. Say goodbye to everything you love, everything that defines or identifies you. Say au revoir to all that you like to do. Tell your friends 'Sianara' because you're no fun anymore and they feel so bad and have so much pity for you that you can barely be with them. Lifestyle change? You're telling the girl who couldn't change her handwriting for drafting class to change her whole self? No. No, no, no, no, NO!!! After that, I went to prescription medications to sleep and control my increasing anxiety and took a stimulant to make sure I was focused at work and did my best to carry on.
I had pointed out a lot of these things to my regular doctor during this time and so with every subsequent visit, I would ask him to check Ferritin. I just didn't let it drop. After another 3 or 4 tests, and like a year later, he finally referred me to a Hematologist. (Please note, I tried lots of times to supplement but I couldn't take more than 50mg a day without life stopping constipation.) After this, I got nervous, and I started to research more and make myself more nervous but during all those nights that I was still awake at 2 or 3 o'clock in the morning, that's when I discovered that Iron Deficiency Anemia starves the body of oxygen and causes you to have pale skin, shortness of breath, heart palpitations, fatigue, forgetfulness, listlessness, depression, insomnia, anxiety, psychological problems, restless leg syndrome, and muscle aches. After a year and a half of no sleep (and people accusing me of having sleep apnea 'cos that's what it just HAD to be because I'm fat,) depression, suicidal thoughts, restless leg syndrome, muscle aches, legs I could barely walk on (I had to drag one leg up the stairs,) extreme anxiety, heart palpitations (when they could find nothing wrong with my circulatory system, arteries, or heart,) forgetfulness, listlessness, and let's throw in that I've always looked like the only white person in my tan or olive skinned family and... Shazam!!!
With my Hematologist, I had to again prove after another 90 days that no, I could not successfully digest 325mg of Iron 3 times a day. During this 90 days, I did more research, even downloaded books. I found explanations for my dry skin, for the hair loss (in addition to the PCOS,) and also read that when the body is in an anemic state, it pulls blood back from all the parts of the body it doesn't deem as wholly necessary for survival - concentrating most of the blood between the lungs and the brain - the heart pumping 3 or 4 times the normal rate to keep oxygen in constant circulation. I started to get smarter in my 2:00AM searches. Anemia and ADHD. Anemia and thyroid. Anemia and Autoimmune disease. Anemia and PCOS. Anemia and OCD. When my doctor finally agreed to infuse me intravenously, it still took 2 reminder phone calls and a reschedule before I got my appointment. During this period, I caught the crazy whooping cough cold that lasted 17 days four times in a row and ended up with pleurisy and pneumonia. I've read some articles where it states Iron Deficiency could impact the immune system but my Hematologist seemed unsure about this when I asked. Still - four times? As the days crawled closer to my treatment date, I could barely function. I told some friends about the treatment and some were disinterested, one told me she was glad I was finally doing something about it which was completely insensitive and by then, I was so exhausted I thought I might die and I honestly had reached a point where I wanted to. People were so tired of me feeling bad they perceived I did nothing about it and it made it really hard to not wish them all illness so they could see what it was like to feel so helpless. I was gobbling red meat, spinach salad, and almonds daily which seemed to do nothing and I was practically crawling up the stairs cos I couldn't walk and I was 100% completely suicidal. In my paranoia, I know I questioned all of my friends because of the actions of a few.
I just couldn't live that way anymore.
But I didn't give up and treatment day came and one week later I looked back and realized that for the first time in 2 years, I had slept four nights in a row. I sobbed in complete thankfulness. In another week, I could climb the stairs with both legs and my legs stopped cramping at night. My heart stopped pounding. It took another month or two and then I noticed that I started to care again. I no longer cared if others cared or not. I no longer needed medication to sleep or to concentrate. My hair started to grow again. My nails started to grow again. I gained more weight, of course, but I found myself again - the me that wasn't a weakling, the me that wasn't a victim. I cried a lot out of sheer happiness.
Intravenous Iron treatment saved my life. I still have fatigue but nothing like before. I feel really wasted after each cycle for a couple days but then I'm better. It's been almost a year since my treatment and I'll probably have to have one sometime in the next couple of months but at least I know what it is and at least I know what will help. At least I know I can beg for a hysterectomy someday.
If you are a cyster (or anyone) who has heavy cycles (Menorrhagia) or gastrointestinal bleeding, you are losing your vital life essence. You are losing yourself. Get yourself checked out!
Also - don't settle for bad friends. No matter how scary, you can find new ones at any age.
There are some helpful websites below.
http://www.thedoctorwillseeyounow.com/content/nutrition/art2046.html
http://www.cdc.gov/nutrition/everyone/basics/vitamins/iron.html
http://www.webmd.com/women/guide/heavy-period-causes-treatments
http://www.medicinenet.com/script/main/art.asp?articlekey=46270&page=2
My friend has never been the type of person to be defeated by things easily or to let life get her down so much and she's always been peppy and friendly and just fun. The last couple of years, she's been letting life get to her (and people,) and it's just not like her to be this way. Myself and some mutual friends of ours (other cysters or folks with similar health issues,) begged her to get her iron levels checked as we had recently learned from what happened to us, how Iron Deficiency could impact every facet of life. She said she would check and so I was surprised when we were leaving and she said her doctor gave her these giant horse supplements and told her that her iron was low. Actually, I wanted to beat her up for not telling me sooner but she forgot. Forgetfulness is one of the biggest symptoms of iron deficiency. In fact, if you Google 'iron deficiency and ADHD,' you'll find some scientific journal articles connecting the two. Could this be behind the rise in adult ADHD diagnoses - especially amongst women? You do the math.
I wanted to spill all I knew about this subject but she had to leave and so I will have to content myself with the knowledge that she might potentially read my blog - especially if I tell her I was talking about her. Hopefully she won't kill me. So, I will tell my story here to all of you.
Back in February of 2011, I took a diet drug I never should have taken and I began to suffer from severe insomnia. It went on for months and by June, I had reached a place of severe debilitation. I was lucky if I slept for 3 hours a night. If I took antihistamines, I might get 5. On the weekends, I would double-up and hope to get 7. Some nights, no matter what I took, I would just lie there stuck in my head with myself. Doctors had no suggestions for me and so I decided to work with a Naturopathic Nutritionist who cost a fortune but ran a lot of tests. Way more than my doctors ever ran. I found out a lot about myself. There were two tests that he ran that were interesting. He tested Iron in two forms - circulating and storage (called Ferritin,) and also tested Vitamin D in the same fashion. I found out that my circulating Iron was normal but my Iron storage (Ferritin) was getting low. He explained that when you're circulating Iron looks normal and someone complains of fatigue, that doctors need to check Ferritin as the human body will rob from internal iron stores in the liver, pancreas, and bone marrow to keep iron in the bloodstream as it's needed to make hemoglobin. Hemoglobin is what ferries oxygen from the lungs to the rest of the body. My Nutritionist also tested Vitamin D and we discovered that while my circulating levels of Vitamin D were high, my internal Vitamin D storage was really low and that meant that I wasn't absorbing all the Vitamin D I ingested and that could cause toxicity. He advised instead that I get more sunlight. (That will be a topic for ANOTHER blog.)
I worked with this Nutritionist until I couldn't afford to pay him anymore and then I also had to go back to work. I slept a little better initially from the change to a borderline Vegan, very whole foods, non dairy, non gluten, non egg, non soy diet but after the initial ten pounds of water weight was gone, I began to build up exercise and only lost another three pounds. I also started not sleeping again and I would just cry at all the things I couldn't do anymore because of the dietary restrictions. No more drinking with my friends for Happy Hour. No more trying new restaurants unless they had gluten free options. No more tea and crumpets with the girls. No more wine and cheese tastings. Beer tastings. That was like a death blow to the gut. I knew that I would have to keep to that diet forever and I knew while I was sitting there sobbing through a Sargento cheese commercial (True Story,) I wouldn't be successful. I always love how they call it a lifestyle change. It's not. It's a 'become someone with a different life' change. Say goodbye to YOUR life. Say goodbye to everything you love, everything that defines or identifies you. Say au revoir to all that you like to do. Tell your friends 'Sianara' because you're no fun anymore and they feel so bad and have so much pity for you that you can barely be with them. Lifestyle change? You're telling the girl who couldn't change her handwriting for drafting class to change her whole self? No. No, no, no, no, NO!!! After that, I went to prescription medications to sleep and control my increasing anxiety and took a stimulant to make sure I was focused at work and did my best to carry on.
I had pointed out a lot of these things to my regular doctor during this time and so with every subsequent visit, I would ask him to check Ferritin. I just didn't let it drop. After another 3 or 4 tests, and like a year later, he finally referred me to a Hematologist. (Please note, I tried lots of times to supplement but I couldn't take more than 50mg a day without life stopping constipation.) After this, I got nervous, and I started to research more and make myself more nervous but during all those nights that I was still awake at 2 or 3 o'clock in the morning, that's when I discovered that Iron Deficiency Anemia starves the body of oxygen and causes you to have pale skin, shortness of breath, heart palpitations, fatigue, forgetfulness, listlessness, depression, insomnia, anxiety, psychological problems, restless leg syndrome, and muscle aches. After a year and a half of no sleep (and people accusing me of having sleep apnea 'cos that's what it just HAD to be because I'm fat,) depression, suicidal thoughts, restless leg syndrome, muscle aches, legs I could barely walk on (I had to drag one leg up the stairs,) extreme anxiety, heart palpitations (when they could find nothing wrong with my circulatory system, arteries, or heart,) forgetfulness, listlessness, and let's throw in that I've always looked like the only white person in my tan or olive skinned family and... Shazam!!!
With my Hematologist, I had to again prove after another 90 days that no, I could not successfully digest 325mg of Iron 3 times a day. During this 90 days, I did more research, even downloaded books. I found explanations for my dry skin, for the hair loss (in addition to the PCOS,) and also read that when the body is in an anemic state, it pulls blood back from all the parts of the body it doesn't deem as wholly necessary for survival - concentrating most of the blood between the lungs and the brain - the heart pumping 3 or 4 times the normal rate to keep oxygen in constant circulation. I started to get smarter in my 2:00AM searches. Anemia and ADHD. Anemia and thyroid. Anemia and Autoimmune disease. Anemia and PCOS. Anemia and OCD. When my doctor finally agreed to infuse me intravenously, it still took 2 reminder phone calls and a reschedule before I got my appointment. During this period, I caught the crazy whooping cough cold that lasted 17 days four times in a row and ended up with pleurisy and pneumonia. I've read some articles where it states Iron Deficiency could impact the immune system but my Hematologist seemed unsure about this when I asked. Still - four times? As the days crawled closer to my treatment date, I could barely function. I told some friends about the treatment and some were disinterested, one told me she was glad I was finally doing something about it which was completely insensitive and by then, I was so exhausted I thought I might die and I honestly had reached a point where I wanted to. People were so tired of me feeling bad they perceived I did nothing about it and it made it really hard to not wish them all illness so they could see what it was like to feel so helpless. I was gobbling red meat, spinach salad, and almonds daily which seemed to do nothing and I was practically crawling up the stairs cos I couldn't walk and I was 100% completely suicidal. In my paranoia, I know I questioned all of my friends because of the actions of a few.
I just couldn't live that way anymore.
But I didn't give up and treatment day came and one week later I looked back and realized that for the first time in 2 years, I had slept four nights in a row. I sobbed in complete thankfulness. In another week, I could climb the stairs with both legs and my legs stopped cramping at night. My heart stopped pounding. It took another month or two and then I noticed that I started to care again. I no longer cared if others cared or not. I no longer needed medication to sleep or to concentrate. My hair started to grow again. My nails started to grow again. I gained more weight, of course, but I found myself again - the me that wasn't a weakling, the me that wasn't a victim. I cried a lot out of sheer happiness.
Intravenous Iron treatment saved my life. I still have fatigue but nothing like before. I feel really wasted after each cycle for a couple days but then I'm better. It's been almost a year since my treatment and I'll probably have to have one sometime in the next couple of months but at least I know what it is and at least I know what will help. At least I know I can beg for a hysterectomy someday.
If you are a cyster (or anyone) who has heavy cycles (Menorrhagia) or gastrointestinal bleeding, you are losing your vital life essence. You are losing yourself. Get yourself checked out!
Also - don't settle for bad friends. No matter how scary, you can find new ones at any age.
There are some helpful websites below.
http://www.thedoctorwillseeyounow.com/content/nutrition/art2046.html
http://www.cdc.gov/nutrition/everyone/basics/vitamins/iron.html
http://www.webmd.com/women/guide/heavy-period-causes-treatments
http://www.medicinenet.com/script/main/art.asp?articlekey=46270&page=2
Tuesday, March 11, 2014
Doldrums
My knees and ankles are swollen like helium balloons and I've felt my mobility shrink from "I've got pep in my step" to "Better run upstairs and get the laundry brought down before I sit" to "Oh my God, please someone just shoot me." The combination of the impending storm combined with PMS adding to an already shitty day, it got progressively worse from the moment I left my first meeting and felt my right knee scream at me as I braced myself to get balance. By lunch I was worn out just from running from my car to my desk and then to a meeting. Stood up after that meeting and realized quite quickly that my other knee must have been feeling left out. Over lunch at Panera, I actually did cry - tears rolling down my cheeks for no reason while I was trying to read after lunch. I did the math and realized, well... Happy PMS to me!
I haven't blogged in a few days as I finally got my test results back. Antibodies did not appear again, so it's "hey, nothing's wrong, your blood work was normal." OK. If I'm normal, why is something growing in my neck? If I'm normal, why is it hard to swallow? If I'm normal, why am I hoarse all the time? If I'm so fucking normal, why is it I can't sleep at night without holding my head at a certain angle or without a certain amount of support? No, it's "Dina, come back in three months for repeat blood work, come back in six months for another ultrasound." Fine. I have no choice but to play along. I've left many an endo without ever going back because they almost all do the same thing. "Eat 1200-1400 calories and here's your script for Metformin." If eating 1200-1400 calories worked, I wouldn't have been being dragged to that famous weight-loss meeting from age 11 onwards always choosing the 1000 calorie diet and quitting after a month because it went nowhere. Oh, and "Fuck your Metformin!" My latest doctor did more than ample blood work, he spent a lot of time with me, and I liked him so I think I will stay. The thought has occurred to my very hard head that had I stayed with a doctor for more than one visit and proved I was doing their stupid diet, that perhaps more attention would have been given. Ya never know - right? I'll give them the benefit of the doubt while I accept responsibility for my failures.
Still, lets go back to when I was 11. It was 1984 and I didn't have an exercise regimen because, ya know, I was a kid. I played basketball that year, participated in gym class, walked all over the playground at recess, walked miles around the neighborhood with my new friend Jill and I also rode my bike all the time. I was in the fifth grade and I spent all summer perfecting my ride down Suicide Hill no-handed so I could impress a boy. I also spent a lot of time hiking through the woods hoping I'd bump into him and then finding that I really liked being in the woods. This is when I wasn't doing the same things with my friends. I'm not going to lie, I liked sitting around watching TV and reading at the same time, but I was outside A LOT. When my doctor screamed at me about my weight being 13 pounds over and that I should eat only carrots and celery, I was dragged to that wonderful place where you get weighed in and sit through a meeting. I never got used to it. It's not that I never had seconds of something wonderful or that I didn't have dessert. But nothing ever seemed to burn off. There was always so much blame. I dreaded going. Hated it. I was always nervous and terrified. I remember lots of screaming matches over food and getting grounded once for starting a fight with my Mom at dinner when she told me I'd already met my limit for servings of hard cheese that week. I just wanted a cheeseburger and not a hamburger. Honestly, why would you NOT choose a cheeseburger. I know there are people who prefer hamburgers, but I've never met one.
I'd spend time at friend's houses and my friends would get to eat what they wanted. Pans of cookies out to pick on, freedom to go in the snack cabinet without having to announce what you were doing or what you were getting, or having to sneak just one mini donut, then carry the shame around with you for the rest of your life. I know my parents were trying to do what the doctor said and that they meant well but the dieting/failing pattern began in this year of my life and would be a constant partner with me through the rest of my life. I can say this too, most of my friends didn't exercise all the time and most of them ate what they wanted. I would bring healthy snacks to slumber parties, have my serving and then watch them eat all the rest. It wasn't fair. It still isn't fair. Knowing people watch everything you put in your mouth is emotionally scarring and I am tired of the blame game. I'm also tired of reliving my past every time I get PMS but I can't help the mood swing most times.
I know that people can and are ignorant, but people need to realize not all fat people are constantly hungry. Not all fat people sit around not moving. (I have become that way from the latest round of nothing's working.) I am tired of the people who profess that if you aren't going meat/ gluten/ dairy/ legume/ grain/ soy/ egg or something free, that you deserve what you got - that you deserve to have diabetes- that you deserve disease and I have seen people in some of the Alternative Medicine sites state things like this. After I turned sixteen, I was less active and I did need to exercise more but knowing that between age 11 and 16, the weight just steadily crept up on me didn't really convince me it would help. When I exercise today, I do it for added strength - especially in my legs and that's what I tell myself to get me around the track or the parking lot or the block - however many times I need to and I started again last week. They will be hobbling saunters this week but I will hobble until my uterus, swollen and heavy like a bowling ball releases it's pint of vital life essence and then I will be walking dead until my body builds it back up. Joy!
My oldest and dearest friend sent me something to view this week and I wanted to share it with all of you as it is an example of complete and un-inhibited bravery.
Meet Whitney Way Thore...
(Make sure you check out her dance videos as there is no reason if a person can move like that, that she wouldn't be able to lose weight unless something was 'not normal.')
http://nobodyshame.com
I have tried so many different things - natural supplements, cleanses, going gluten free, dairy free, once going gluten/dairy/egg/ and soy free all at once. I've tried the Metformin, the spironolactone, the birth control pills... I never stuck with the gluten free for longer than four months and I've read that it takes like 9 months so I'm debating whether to try again, but here's what's crazy. I know that if you are having immune responses to substances like gluten, if you cut them out, you won't see any antibodies in your blood work. So what do I do? I also know that if I cut the gluten out and then go back to it, my hair will fall out. Between my last attempt to go gluten free and my severe anemia, I've already lost over a third of my hair - probably closer to half. I have, not only male pattern hair loss, but an overall hair loss equal to that of someone in their sixties. The fact that my hair is extra thick and naturally curly is my only saving grace. If I fail again, how much more hair will I lose? Plus, giving up gluten really crimps my style. I am single, I live a single life. I go out with my friends on weekends. I drink. I taste. I travel. I'm Mediterranean. I am NOT giving up my Mother's cooking. I am not giving up exploring every cultural drink or food on offer. I will limit the gluten. I will limit the white flour and the bad carbs and stay healthy for as long as I can, but that's ALL I'm doing. I'm done trying to please people. I'm done trying to prove anything to anyone but medicine owes some proof to me - they owe me more than blame. I won't give up hoping there is more than band-aids. I won't give up praying for a cure. I will also NOT, I repeat NOT give up the occasional Pain Au Chocolat.
Besides, it's the perfect cure to counter that righteous PMS dark chocolate craving I'm going to get tomorrow.
Happy PMS indeed!
I haven't blogged in a few days as I finally got my test results back. Antibodies did not appear again, so it's "hey, nothing's wrong, your blood work was normal." OK. If I'm normal, why is something growing in my neck? If I'm normal, why is it hard to swallow? If I'm normal, why am I hoarse all the time? If I'm so fucking normal, why is it I can't sleep at night without holding my head at a certain angle or without a certain amount of support? No, it's "Dina, come back in three months for repeat blood work, come back in six months for another ultrasound." Fine. I have no choice but to play along. I've left many an endo without ever going back because they almost all do the same thing. "Eat 1200-1400 calories and here's your script for Metformin." If eating 1200-1400 calories worked, I wouldn't have been being dragged to that famous weight-loss meeting from age 11 onwards always choosing the 1000 calorie diet and quitting after a month because it went nowhere. Oh, and "Fuck your Metformin!" My latest doctor did more than ample blood work, he spent a lot of time with me, and I liked him so I think I will stay. The thought has occurred to my very hard head that had I stayed with a doctor for more than one visit and proved I was doing their stupid diet, that perhaps more attention would have been given. Ya never know - right? I'll give them the benefit of the doubt while I accept responsibility for my failures.
Still, lets go back to when I was 11. It was 1984 and I didn't have an exercise regimen because, ya know, I was a kid. I played basketball that year, participated in gym class, walked all over the playground at recess, walked miles around the neighborhood with my new friend Jill and I also rode my bike all the time. I was in the fifth grade and I spent all summer perfecting my ride down Suicide Hill no-handed so I could impress a boy. I also spent a lot of time hiking through the woods hoping I'd bump into him and then finding that I really liked being in the woods. This is when I wasn't doing the same things with my friends. I'm not going to lie, I liked sitting around watching TV and reading at the same time, but I was outside A LOT. When my doctor screamed at me about my weight being 13 pounds over and that I should eat only carrots and celery, I was dragged to that wonderful place where you get weighed in and sit through a meeting. I never got used to it. It's not that I never had seconds of something wonderful or that I didn't have dessert. But nothing ever seemed to burn off. There was always so much blame. I dreaded going. Hated it. I was always nervous and terrified. I remember lots of screaming matches over food and getting grounded once for starting a fight with my Mom at dinner when she told me I'd already met my limit for servings of hard cheese that week. I just wanted a cheeseburger and not a hamburger. Honestly, why would you NOT choose a cheeseburger. I know there are people who prefer hamburgers, but I've never met one.
I'd spend time at friend's houses and my friends would get to eat what they wanted. Pans of cookies out to pick on, freedom to go in the snack cabinet without having to announce what you were doing or what you were getting, or having to sneak just one mini donut, then carry the shame around with you for the rest of your life. I know my parents were trying to do what the doctor said and that they meant well but the dieting/failing pattern began in this year of my life and would be a constant partner with me through the rest of my life. I can say this too, most of my friends didn't exercise all the time and most of them ate what they wanted. I would bring healthy snacks to slumber parties, have my serving and then watch them eat all the rest. It wasn't fair. It still isn't fair. Knowing people watch everything you put in your mouth is emotionally scarring and I am tired of the blame game. I'm also tired of reliving my past every time I get PMS but I can't help the mood swing most times.
I know that people can and are ignorant, but people need to realize not all fat people are constantly hungry. Not all fat people sit around not moving. (I have become that way from the latest round of nothing's working.) I am tired of the people who profess that if you aren't going meat/ gluten/ dairy/ legume/ grain/ soy/ egg or something free, that you deserve what you got - that you deserve to have diabetes- that you deserve disease and I have seen people in some of the Alternative Medicine sites state things like this. After I turned sixteen, I was less active and I did need to exercise more but knowing that between age 11 and 16, the weight just steadily crept up on me didn't really convince me it would help. When I exercise today, I do it for added strength - especially in my legs and that's what I tell myself to get me around the track or the parking lot or the block - however many times I need to and I started again last week. They will be hobbling saunters this week but I will hobble until my uterus, swollen and heavy like a bowling ball releases it's pint of vital life essence and then I will be walking dead until my body builds it back up. Joy!
My oldest and dearest friend sent me something to view this week and I wanted to share it with all of you as it is an example of complete and un-inhibited bravery.
Meet Whitney Way Thore...
(Make sure you check out her dance videos as there is no reason if a person can move like that, that she wouldn't be able to lose weight unless something was 'not normal.')
http://nobodyshame.com
I have tried so many different things - natural supplements, cleanses, going gluten free, dairy free, once going gluten/dairy/egg/ and soy free all at once. I've tried the Metformin, the spironolactone, the birth control pills... I never stuck with the gluten free for longer than four months and I've read that it takes like 9 months so I'm debating whether to try again, but here's what's crazy. I know that if you are having immune responses to substances like gluten, if you cut them out, you won't see any antibodies in your blood work. So what do I do? I also know that if I cut the gluten out and then go back to it, my hair will fall out. Between my last attempt to go gluten free and my severe anemia, I've already lost over a third of my hair - probably closer to half. I have, not only male pattern hair loss, but an overall hair loss equal to that of someone in their sixties. The fact that my hair is extra thick and naturally curly is my only saving grace. If I fail again, how much more hair will I lose? Plus, giving up gluten really crimps my style. I am single, I live a single life. I go out with my friends on weekends. I drink. I taste. I travel. I'm Mediterranean. I am NOT giving up my Mother's cooking. I am not giving up exploring every cultural drink or food on offer. I will limit the gluten. I will limit the white flour and the bad carbs and stay healthy for as long as I can, but that's ALL I'm doing. I'm done trying to please people. I'm done trying to prove anything to anyone but medicine owes some proof to me - they owe me more than blame. I won't give up hoping there is more than band-aids. I won't give up praying for a cure. I will also NOT, I repeat NOT give up the occasional Pain Au Chocolat.
Besides, it's the perfect cure to counter that righteous PMS dark chocolate craving I'm going to get tomorrow.
Happy PMS indeed!
Tuesday, March 4, 2014
Anxious Vindication
I was passed thru to my new endocrinologist's triage nurse today after calling and asking about receiving my latest test results. I got her voicemail which stated not to bother to ask unless it's been two weeks. Since that's not until Friday, is it any wonder I almost hurled my headset across my cubicle?
Waiting for results is almost worse than thinking there is something wrong in the first place. Especially when you know something is absolutely NOT right. Back in August, I mentioned to my doctor that I was having some discomfort in my neck. Having had every doctor comment on how large my thyroid feels and having known since my last thyroid ultrasound in 2009 that I had a goiter, I have been just completely miffed that nothing ever shows in my blood work and I thought I should push the issue and ask about it again. So my doctor sent me for the ultrasound and after a couple of weeks of not hearing anything, I remembered to call my doctor's office and ask if they'd received the results. I was told the hospital needed my previous ultrasound to compare it to. I was so busy that it was weeks before I remembered I had to do this and to be honest - after years of being told "nope, everything's normal," I didn't really anticipate there'd be anything there. I finally got around to dropping off the old results at the hospital in early October.
After that, I went on a glorious two week exploration of Northern Spain and forgot my life entirely. I got my exercise on about six weeks before the trip and it carried me through all the walking and stair climbing. I continued after returning home but couldn't walk miles a day. After finding out at my Hematologist's that I weighed the same and then entering into a period of cold weather, I was deterred again from exercising, even though I know I need it for strength. Learning about my weight reminded me of the thyroid ultrasound so I called my doctor's office to ask again if they'd heard anything back. This time I was told the hospital had lost it but after finding it would be taking a look at it that day. Another couple of weeks went by and just before Christmas I received notification in the mail that I had a nodule on the right side of my thyroid. I quickly made a call to my doctor's office and asked for a write up for new blood work and made an appointment for a week later to discuss the results.
I should probably say here that I've thought there was something wrong with my thyroid since I was in my twenties. I had a doctor at the time that checked it every time I came in - no matter what I was really there for. God Bless him, at least he believed me when I said I wasn't a pig. Always normal though. By the time I was pushing forty, I'd given up believing in what I knew to be true about myself. I gave up that fight for being repeatedly treated as though I was insane.
After two years of asking my doctor every time he took blood to test me for antibodies and getting increasingly more and more downtrodden, by a chance mistake, some showed up. (It can take a person years to be diagnosed with anything autoimmune as the antibodies don't always show up.) When I got the test back, a different antibody had been tested by mistake - a TRAb antibody called thyrotropin receptor which is usually associated with Graves Disease but could also point to Hashimoto's. It was high. Whatever nervousness I experienced from learning the results, they took a backburner to the knowledge I had at last been vindicated.
So after meeting with an ENT doctor, having another ultrasound (to find out it had grown a smidge,) and then a biopsy, I found out it was not cancer. My immediate reaction was one of complete disappointment. I almost had a breakdown screaming and crying at relatives on the phone. It's terrible, but that very day, I would've risked cancer to have the damn thing removed. After some additional research, I have read that some people feel great afterwards and have relief from all their symptoms and some get so hypothyroid they gain a tremendous amount of weight. Since I cannot afford to gain anymore- again I am perplexed. So here I am again, waiting for test results to see where I am. To see if any other weird antibodies show up. To see what happens next. I'm so terrified and confused.
If you think you might have symptoms not adequately explained by PCOS, a good website to read is this one which explains the connection between PCOS and an auto-immune disease called Hashimoto's. Hashimoto's is increasingly and most frequently connected with PCOS.
http://www.drhagmeyer.com/hashimotos-thyroid-disease/women-pcos-often-have-hidden-hashimotos-autoimmune-thyroiditis/
However, I've had many chats with many other PCOS sufferers in my support groups who have been diagnosed with Graves, Hashimoto's, Lupus, and many other autoimmune diseases. If you have been diagnosed with PCOS it would be helpful for you to take this quiz, study the blood work you need done and then take the quiz to your doctor and ask for it. If he/she won't help you, find a new doctor.
http://thyroid.about.com/cs/endocrinology/l/blchecklist.htm
Thanks for listening and have a good night!
Waiting for results is almost worse than thinking there is something wrong in the first place. Especially when you know something is absolutely NOT right. Back in August, I mentioned to my doctor that I was having some discomfort in my neck. Having had every doctor comment on how large my thyroid feels and having known since my last thyroid ultrasound in 2009 that I had a goiter, I have been just completely miffed that nothing ever shows in my blood work and I thought I should push the issue and ask about it again. So my doctor sent me for the ultrasound and after a couple of weeks of not hearing anything, I remembered to call my doctor's office and ask if they'd received the results. I was told the hospital needed my previous ultrasound to compare it to. I was so busy that it was weeks before I remembered I had to do this and to be honest - after years of being told "nope, everything's normal," I didn't really anticipate there'd be anything there. I finally got around to dropping off the old results at the hospital in early October.
After that, I went on a glorious two week exploration of Northern Spain and forgot my life entirely. I got my exercise on about six weeks before the trip and it carried me through all the walking and stair climbing. I continued after returning home but couldn't walk miles a day. After finding out at my Hematologist's that I weighed the same and then entering into a period of cold weather, I was deterred again from exercising, even though I know I need it for strength. Learning about my weight reminded me of the thyroid ultrasound so I called my doctor's office to ask again if they'd heard anything back. This time I was told the hospital had lost it but after finding it would be taking a look at it that day. Another couple of weeks went by and just before Christmas I received notification in the mail that I had a nodule on the right side of my thyroid. I quickly made a call to my doctor's office and asked for a write up for new blood work and made an appointment for a week later to discuss the results.
I should probably say here that I've thought there was something wrong with my thyroid since I was in my twenties. I had a doctor at the time that checked it every time I came in - no matter what I was really there for. God Bless him, at least he believed me when I said I wasn't a pig. Always normal though. By the time I was pushing forty, I'd given up believing in what I knew to be true about myself. I gave up that fight for being repeatedly treated as though I was insane.
After two years of asking my doctor every time he took blood to test me for antibodies and getting increasingly more and more downtrodden, by a chance mistake, some showed up. (It can take a person years to be diagnosed with anything autoimmune as the antibodies don't always show up.) When I got the test back, a different antibody had been tested by mistake - a TRAb antibody called thyrotropin receptor which is usually associated with Graves Disease but could also point to Hashimoto's. It was high. Whatever nervousness I experienced from learning the results, they took a backburner to the knowledge I had at last been vindicated.
So after meeting with an ENT doctor, having another ultrasound (to find out it had grown a smidge,) and then a biopsy, I found out it was not cancer. My immediate reaction was one of complete disappointment. I almost had a breakdown screaming and crying at relatives on the phone. It's terrible, but that very day, I would've risked cancer to have the damn thing removed. After some additional research, I have read that some people feel great afterwards and have relief from all their symptoms and some get so hypothyroid they gain a tremendous amount of weight. Since I cannot afford to gain anymore- again I am perplexed. So here I am again, waiting for test results to see where I am. To see if any other weird antibodies show up. To see what happens next. I'm so terrified and confused.
If you think you might have symptoms not adequately explained by PCOS, a good website to read is this one which explains the connection between PCOS and an auto-immune disease called Hashimoto's. Hashimoto's is increasingly and most frequently connected with PCOS.
http://www.drhagmeyer.com/hashimotos-thyroid-disease/women-pcos-often-have-hidden-hashimotos-autoimmune-thyroiditis/
However, I've had many chats with many other PCOS sufferers in my support groups who have been diagnosed with Graves, Hashimoto's, Lupus, and many other autoimmune diseases. If you have been diagnosed with PCOS it would be helpful for you to take this quiz, study the blood work you need done and then take the quiz to your doctor and ask for it. If he/she won't help you, find a new doctor.
http://thyroid.about.com/cs/endocrinology/l/blchecklist.htm
Thanks for listening and have a good night!
Sunday, March 2, 2014
Introduction
It's Sunday - not an ordinary one by any means as it's snowing, and quite a lot for the 1st of March. Unlike other Sundays where we have family dinner at midday in the tradition of my Mediterranean ancestry, it will be quiet today and although part of me relishes the quiet and relaxation, another part of me feels barricaded and trapped as I know I can't just do what I want. Inwardly I cringe at having to face another Monday in just a few short hours. I cringe as I'll be trapped then also in the hulking and lumbering body I drag around with me through all things except my dreams.
Unlike this temporary Sunday trap, I rarely relish this me that I live inside, even if at times, it is freeing to know I need not live up to any expectations since most people that view my exterior never see me as capable of any. One who sees me on the outside looks, passes their judgment on me, and moves quickly on - confident in their opinion I'm not worth a second look. Confident in their opinion I have let myself go and therefore could not possibly contain anything worth looking at or knowing. Yet, even though it is freeing, I am forever stuck here, in this place where I am completely trapped. It matters not who I am or what I want or what I do - what I believe in, or what's important to me. Therefore, every action I take must be a desperate one - because I am fat.
It is the most insulting thing in all the world to say a person has 'let themselves go' and yet, in some ways I have given up. I have given up on people. I have no belief in them. I have given up on doctors. I have no trust in them. I have given up on religion. It has given me no explanation or mantra I can reconcile hope with. As I write this today, I have only a sliver of hope that I cling to and it is tied to my own courage, my own resolve to still fight even though there are days where my resolve completely disappears and I lay there curled in a ball, screaming on the inside, but tightly clinging to that hope. It's that sliver of hope that makes me demand more of people in my life in hopes they'll see their own prejudices and yet at the same time truly believe that my friends really do love me and that it's not just pity. It's that sliver of hope that drives me to be my own health advocate with doctors in hopes they'll see they maybe need to pay more attention, and it's that sliver of hope that keeps me going - still setting goals, still going out on weekends, still travelling - no matter how it hurts emotionally, physically, or mentally.
I fear what will become of me should that sliver disintegrate.
It took me so many years to find myself and figure out who I am 'on the inside' that the thought of losing myself is to me the most terrifying thing. The thought that I could care no more about life that I would just let it go. It's hurts me in a way that is most debilitating emotionally and mentally to know people think that I have let go when I know I still hang on by this sliver. Even if it might just be only barely.
One cannot change another's thoughts and I am not going to attempt to lecture anyone about what is right or in which ways they might be completely ignorant even though I have personally received this lecture from many others. Instead, I am going to just lay it all out here. The good, the bad, and the ugly. I am too old to have the life I wanted as a child. It is not that I don't still have dreams, it's just that I feel I have nothing to lose by being honest about what I go through. I can also recognize where I need to make improvements or can do better.
I write this for my Soul Cysters. The cysters of the past that didn't know they were cysters because doctor's didn't know how to diagnose PCOS; the cysters and fighters of today who even armed with this knowledge face ignorance, prejudice, blame, shame, heartbreak, or persecution; the cysters of the future - may they find a cure; and lastly for the cyster that is me, swimming and sweltering in my prison of adipose, clinging to my sliver of hope that I will one day be free of this sentence I was dealt from puberty onwards.
Whether you are a cyster or just someone who knows or loves a cyster, I welcome you to my blog. I can't and won't guarantee it will always be positive but it will be human.
Welcome!
Unlike this temporary Sunday trap, I rarely relish this me that I live inside, even if at times, it is freeing to know I need not live up to any expectations since most people that view my exterior never see me as capable of any. One who sees me on the outside looks, passes their judgment on me, and moves quickly on - confident in their opinion I'm not worth a second look. Confident in their opinion I have let myself go and therefore could not possibly contain anything worth looking at or knowing. Yet, even though it is freeing, I am forever stuck here, in this place where I am completely trapped. It matters not who I am or what I want or what I do - what I believe in, or what's important to me. Therefore, every action I take must be a desperate one - because I am fat.
It is the most insulting thing in all the world to say a person has 'let themselves go' and yet, in some ways I have given up. I have given up on people. I have no belief in them. I have given up on doctors. I have no trust in them. I have given up on religion. It has given me no explanation or mantra I can reconcile hope with. As I write this today, I have only a sliver of hope that I cling to and it is tied to my own courage, my own resolve to still fight even though there are days where my resolve completely disappears and I lay there curled in a ball, screaming on the inside, but tightly clinging to that hope. It's that sliver of hope that makes me demand more of people in my life in hopes they'll see their own prejudices and yet at the same time truly believe that my friends really do love me and that it's not just pity. It's that sliver of hope that drives me to be my own health advocate with doctors in hopes they'll see they maybe need to pay more attention, and it's that sliver of hope that keeps me going - still setting goals, still going out on weekends, still travelling - no matter how it hurts emotionally, physically, or mentally.
I fear what will become of me should that sliver disintegrate.
It took me so many years to find myself and figure out who I am 'on the inside' that the thought of losing myself is to me the most terrifying thing. The thought that I could care no more about life that I would just let it go. It's hurts me in a way that is most debilitating emotionally and mentally to know people think that I have let go when I know I still hang on by this sliver. Even if it might just be only barely.
One cannot change another's thoughts and I am not going to attempt to lecture anyone about what is right or in which ways they might be completely ignorant even though I have personally received this lecture from many others. Instead, I am going to just lay it all out here. The good, the bad, and the ugly. I am too old to have the life I wanted as a child. It is not that I don't still have dreams, it's just that I feel I have nothing to lose by being honest about what I go through. I can also recognize where I need to make improvements or can do better.
I write this for my Soul Cysters. The cysters of the past that didn't know they were cysters because doctor's didn't know how to diagnose PCOS; the cysters and fighters of today who even armed with this knowledge face ignorance, prejudice, blame, shame, heartbreak, or persecution; the cysters of the future - may they find a cure; and lastly for the cyster that is me, swimming and sweltering in my prison of adipose, clinging to my sliver of hope that I will one day be free of this sentence I was dealt from puberty onwards.
Whether you are a cyster or just someone who knows or loves a cyster, I welcome you to my blog. I can't and won't guarantee it will always be positive but it will be human.
Welcome!
Subscribe to:
Posts (Atom)