For awhile at work a couple of years ago, I worked with a guy who dubbed me 'Dina Spazz' after as spazzed out once during a work crisis. After that, he forever called me that and I never minded as it was so true. I tend to be very peevish about things and spazz out when I'm irritated or, well... peeved. The thing that spazzes me out the most about having PCOS or being obese is inadequate medical care.
It's a terrible, sad, and shameful thing if a woman has to beg for proper care, keep switching doctors, or tell her own doctor what tests to have done. There is also still an ever pervasive movement in medicine to ignore female issues - unless you're trying to conceive and then they'll pump you full of all kinds of hormones unless they think you're not worthy, 'cos your fat. Yes, I said it. I am fortunate that I don't have this problem with my doctor. He's made it clear he would help me if I needed it but not all obese women with PCOS are so lucky. Many get things like this...
"Of course you can't get with child, you're too unhealthy to be a parent."
"There is nothing I can do because you can't stop eating."
"It's survival of the fittest and you're unfit."
Then there are the women who either don't have periods for months or even years or have the opposite where they bleed for weeks at a time. There are doctors who think there is nothing wrong with this and no reason to treat it. There are medications to help and not having periods is a risk for uterine cancer. It's completely irresponsible for doctors to ignore these women.
Here's what some of them hear...
"I don't have time to waste on someone that won't help themselves."
"You're just depressed, let me give you some Wellbutrin, Celexa, Prozac, (insert drug of choice.)"
"Here's 3 packs of free birth control pills called Yasmin (that will fuck you up royally.)"
"Well, PCOS is rare so it never dawned on me that you would have that."
PCOS affects 1 in 10 women and there are all sorts of women who aren't getting diagnosed because doctors aren't being taught to look for/diagnose this. It's also very profitable to some groups if we all end up getting HBP, High Cholesterol, Kidney Failure, Clogged Arteries, and Diabetes when we don't deserve it.
Also - birth control pills are actually really bad for PCOS as PCOS along with Endometriosis and Fibroids are caused by Estrogen Dominance. Our bodies make an improper amount of estrogen or respond to phyto-estrogens in our environment or diet and convert it to bad testosterone. By taking birth control pills, you introduce more estrogen. Yet they still help a few women with PCOS and so doctors regularly push this as a first response.
They say that something like 75% of women with PCOS are gluten intolerant yet most doctors never mention that gluten intolerance is even real so a lot of women struggle for years with PCOS before realizing there is something that can help - not cure - but help.
I've had my share of bad doctors in the past. I lost my gall bladder in 2006 after eight years of mystery pain. I wasn't anywhere near the size I am now, but I received the same response from several doctors. I saw two endocrinologists, two gastroenterologists, one gynecologist, and two internal medicine doctors as this pain became more severe. It started out as a spasmodic pain on my right side that would arise whenever I drank diet coke or slept on my right side for longer than 9 minutes. I quickly learned to avoid diet coke and I had to sleep elevated on my back so that the pain would not come. When I described this pain to doctors, I told them about the triggers and the spasms, the excruciating pain, and that it felt like I was sleeping on a "ball" of pain. I was told it was just "muscle pain" because I needed to exercise and stretch my muscles or that if it was after I had drank a diet coke at a movie, it was because I had been drinking the diet coke while siting for two hours or more. So they treated me like I was lazy and made assumptions about my activity level and over these years, my activity level decreased as I became more sedentary because if the pain came, I couldn't move much or the pain would take my breath away, I was afraid to go anywhere for fear I'd be struck and have to try to drive home with these spasms occurring. I went to London during this time with my sister and maybe slept four hours a night because apparently, when sleeping on my back, I snore and since I could never sleep on my right side, I was fucked. (It was still my favorite trip though, as I was with my baby sister.)
Finally, my regular doctor sold his practice and not knowing where to go when I got a sinus infection, I decided to just try the new guy. Whilst it's very difficult to get care for endocrine dysfunction, it's very easy to get antibiotics. So I went to see him and he visited with me for a while and said, "Is that all that's wrong, you don't seem right." By this time, I was having this pain every night without fail and it would start bothering me right after work and last me deep into the night. So I told this new doctor. Told him about how other doctors said it was muscle pain and as I started to describe it, I burst into tears and I told him how many years it had been and how it affected my life and that I didn't know what I was going to do. He said "well, did anyone ever do an ultrasound?" I cried "No."
So I got sent for an ultrasound and found out I had a gallstone the size of a golf ball. It was very quickly removed and I got my life back. I still can't and won't drink diet coke and as a result, broke any pop habit I ever had. I allow myself a regular pop once a week and try like the plague to avoid being tempted. Although, as bad as HFCS makes me, I don't have to avoid too hard most weeks. Something I've learned in the past couple of years is that losing your gall bladder is connected with gluten intolerance. Imagine if doctors looked for this when you first present with isssues? Could I have saved my gall bladder? Could I have been diagnosed with PCOS years sooner?
I wish I could go back and track how much weight I gained over these years that I could barely move without triggering pain and it was a heavy price to pay in order to learn to be your own health advocate.
The moral of the story: Find a good doctor! First do your own research. Figure out every test you need and go to your doctor's visit armed with this information and ask for it. If he/she is still useless, find another. There are websites out there that recommend people. Find someone else in one of the PCOS Support Groups that lives in your area and go to THAT doctor. Get copies of all test results, blood work, etc. and look it all up on the internet so you know what's what and can track what is happening with yourself.
Lastly, if that doesn't work - then go postal. A little drama never hurts. Think of the suffragettes going on food strikes or chaining themselves to fences outside the White House. Cry your bloody heart out!!! Shame them for their prejudice or ignorance. Infact... why don't you just
FUCKING SPAZZZZZZZ!!!!!
Monday, April 28, 2014
Thursday, April 24, 2014
Time Out
So, I got to have my iron treatment again a couple weeks ago. I was thinking I'd start feeling great in a couple of weeks and other than realizing after a week that it was getting a little easier to climb the stairs, the last two weeks have been hell on earth. I got back into work the following Monday swollen like a balloon and in excruciating pain. I looked at the calendar and lo and behold - what time is it? Yes, your correct - my favorite time of the month - the day one week before my cycle is due and the commencement of PMS.
So now I know the next week is going to be sucky and after a few days, it gets worse and I'm thinking it's going to come just before the weekend and hopefully I'll still have a good Easter. Having taken Friday and Monday off, I had a lot of plans for the weekend that involved lifting and moving things and instead spent most of the time in bed curled in a ball and popping ibuprofen and trying not to cry because my neurotransmitters failed me again. There's nothing like waking up expecting to have a good day and instead getting endless pain.
So Easter weekend came and went. All day Monday of this week, I had horrible cramps. Tuesday they got worse. Yesterday I was walking with a permanent bend at the pelvis and after gobbling down some Naproxen-Sodium both last night and this morning, I thought for sure my special gift would arrive today. Nope. Still period-free!
What the fuck is going on? This is ridiculous. I was supposed to be starting a new exercise program this week and I'm supposed to do my company's corporate challenge walk tomorrow night. If I start later tonight or tomorrow, I'm screwed on that front unless I wear a diaper. Still, other than phantom starts today, it doesn't seem as though it will ever come. I'm supposed to go to a Beer Fest on Saturday. You know what those are like. I'll give you a clue. Johnny On the Spot. And it's supposed to be like 80 degrees outside and humid - and I'm supposed to be beer tasting?
This is when I call 'Time Out.' I've fucking had enough. This has ruined two weeks of my life already and this doesn't even count the one week of weird cramps I had before this. Thank God I see my gyno on the 1st. We are going to have to do something about this. I can't take it anymore.
The other day I sat thinking about it and PMS and all that comes with it, the heavy cycles and blood loss, and overall general iron deficiency anemia negatively affects my overall life and pursuit of health and happiness around 75% of the year. Here's how I figure. After I get intravenous iron treatment, it takes at least a month before you get the benefit where you can start getting back to self and incorporate good healthy changes - i.e. where you care about incorporating good, healthy changes, and then about six months after that, the iron levels start to taper off, getting lower and lower and lower until you're down too low. So these 3 months, you are starting to get more tired and you're not sure if it's you or not and then for the next 3 months, you are low and you are exhausted and you're waiting for your blood work to hit the number it needs to for treatment. So 6 months on. 6 months off. That's 50%. Then if you look at the good six months, you still have PMS, still have a heavy cycle, and still suffer anemia right after you lose a pint of blood until your body robs from itself to get to feeling back to normal. Since that all takes 2 weeks, that's and additional 50% of each month that you feel like shit. That's half of the good six months which is another 25% of the year.
Now, it's not that there aren't good 'mind over matter' days, but they are few and far between and you just get tired of being in pain. I am actually envious of the gals with PCOS who don't have cycles. I would rather have that than what I have. At least they don't have to worry about whether they'll be able to walk or play tennis or shop with the equivalent of a diaper on. I would give anything to drop my uterus into a toilet.
You always hear how greed or power corrupts absolutely - but I think it's really pain that does it. It warps you until you yourself are a hard, steel, sharp edged blade, ready to carve out any random person's heart. I recently shared a pic on my facebook page about the symptoms of PCOS and on the list was rage. I have a lot of anger that seems to have no place to go. Exercise helps. Sex helps but I've felt so bad about my appearance lately that I haven't had sex in over a year. I just don't think I can again until I feel better about myself. I also have been TKO'd on too many days of late. There are days when it's just not worth going out or even enjoying a few drinks for Happy Hour 'cos it might take me two days to recover. I need to get my exercise on and it's painful enough. I know exercise helps cramps - coincidentally, so does orgasm, but if you are hunched over from the pain, you're not going to make it around the block. So while I think perhaps there are green fields ahead, I have to figure out how to reach them or water my lawn for real. Something has to be done about this blood loss or I'm gonna lose it. I've lost too much already.
One more week 'til my gyno appointment. I hope I don't lose it when I'm in there but I find that when you're fat, crying theatrics tends to get you the care you deserve.
Crazy psycho over and out.
So now I know the next week is going to be sucky and after a few days, it gets worse and I'm thinking it's going to come just before the weekend and hopefully I'll still have a good Easter. Having taken Friday and Monday off, I had a lot of plans for the weekend that involved lifting and moving things and instead spent most of the time in bed curled in a ball and popping ibuprofen and trying not to cry because my neurotransmitters failed me again. There's nothing like waking up expecting to have a good day and instead getting endless pain.
So Easter weekend came and went. All day Monday of this week, I had horrible cramps. Tuesday they got worse. Yesterday I was walking with a permanent bend at the pelvis and after gobbling down some Naproxen-Sodium both last night and this morning, I thought for sure my special gift would arrive today. Nope. Still period-free!
What the fuck is going on? This is ridiculous. I was supposed to be starting a new exercise program this week and I'm supposed to do my company's corporate challenge walk tomorrow night. If I start later tonight or tomorrow, I'm screwed on that front unless I wear a diaper. Still, other than phantom starts today, it doesn't seem as though it will ever come. I'm supposed to go to a Beer Fest on Saturday. You know what those are like. I'll give you a clue. Johnny On the Spot. And it's supposed to be like 80 degrees outside and humid - and I'm supposed to be beer tasting?
This is when I call 'Time Out.' I've fucking had enough. This has ruined two weeks of my life already and this doesn't even count the one week of weird cramps I had before this. Thank God I see my gyno on the 1st. We are going to have to do something about this. I can't take it anymore.
The other day I sat thinking about it and PMS and all that comes with it, the heavy cycles and blood loss, and overall general iron deficiency anemia negatively affects my overall life and pursuit of health and happiness around 75% of the year. Here's how I figure. After I get intravenous iron treatment, it takes at least a month before you get the benefit where you can start getting back to self and incorporate good healthy changes - i.e. where you care about incorporating good, healthy changes, and then about six months after that, the iron levels start to taper off, getting lower and lower and lower until you're down too low. So these 3 months, you are starting to get more tired and you're not sure if it's you or not and then for the next 3 months, you are low and you are exhausted and you're waiting for your blood work to hit the number it needs to for treatment. So 6 months on. 6 months off. That's 50%. Then if you look at the good six months, you still have PMS, still have a heavy cycle, and still suffer anemia right after you lose a pint of blood until your body robs from itself to get to feeling back to normal. Since that all takes 2 weeks, that's and additional 50% of each month that you feel like shit. That's half of the good six months which is another 25% of the year.
Now, it's not that there aren't good 'mind over matter' days, but they are few and far between and you just get tired of being in pain. I am actually envious of the gals with PCOS who don't have cycles. I would rather have that than what I have. At least they don't have to worry about whether they'll be able to walk or play tennis or shop with the equivalent of a diaper on. I would give anything to drop my uterus into a toilet.
You always hear how greed or power corrupts absolutely - but I think it's really pain that does it. It warps you until you yourself are a hard, steel, sharp edged blade, ready to carve out any random person's heart. I recently shared a pic on my facebook page about the symptoms of PCOS and on the list was rage. I have a lot of anger that seems to have no place to go. Exercise helps. Sex helps but I've felt so bad about my appearance lately that I haven't had sex in over a year. I just don't think I can again until I feel better about myself. I also have been TKO'd on too many days of late. There are days when it's just not worth going out or even enjoying a few drinks for Happy Hour 'cos it might take me two days to recover. I need to get my exercise on and it's painful enough. I know exercise helps cramps - coincidentally, so does orgasm, but if you are hunched over from the pain, you're not going to make it around the block. So while I think perhaps there are green fields ahead, I have to figure out how to reach them or water my lawn for real. Something has to be done about this blood loss or I'm gonna lose it. I've lost too much already.
One more week 'til my gyno appointment. I hope I don't lose it when I'm in there but I find that when you're fat, crying theatrics tends to get you the care you deserve.
Crazy psycho over and out.
Sunday, April 13, 2014
New Dreams - Perhaps the Grass Isn't Always Greener?
So, I talked about my dreams surrounding being a Mother and how that didn't pan out. For years, I carried around that heartbreak always thinking, 'oh soon, it will happen,' I'll meet the right person, I'll then be able to fulfill my destiny. I dubbed the life I was living at the time as 'Plan B' instead of Plan A (Plan A being to marry and have a family.). All along, though, I didn't realize as I tried to fill my hole, that I was on this discovery and along the way, I changed. While I spent all this time studying religion and culture or politics - and trying to utilize my free hours in a way that interests me, I finally realized I could put my interest in all these things to better use. At first I tried living my 'Plan B' life with gusto and let it become 'Plan A' but I found I wasn't always happy and I recognized that there were things about me that didn't fit that life and so I went back to school and I eased into it and I found out again that I was not only smart, but in many ways equally as smart if not smarter than a lot of my teachers. I also realized I liked learning this way too and it wasn't as scary as I thought it was going to be. Might as well get credit to learn.
So here I was at this not new but same place in my life but viewing it from a different vantage point, realizing things aren't so scary as I always thought they would be, and being this woman who did everything for herself, I looked back on my life with shame at the time I wasted waiting for something to happen - dreaming about things. I had a step-Aunt once who told my Mother that "I would always be nothing but a dreamer" and my Mom told me this which I always thought was cruel but the words have haunted me. Dreaming about Plan A or any plan, for that matter accomplishes nothing. When I'm at work, I didn't wait for promotions to happen - I worked hard, I found out what to do and I went for it. When I didn't like my position, I changed it. I asked myself why I didn't apply that philosophy to the rest of my life. This change in my thinking came about just before I took General Psych and I thought about how most kids take this when they're young and find out things about themselves, learn to understand their parents and other people so they can better navigate through life and that I really screwed myself by not finishing school for that reason alone and yet, I look around me at all the people I know and I think - they've all forgotten. They've forgotten that only they can change their life. Being trapped in a victim state most of my life, I'm embarrassed to say that fact never occurred to me - at least, even if it was lurking just out of site or in the recesses of my mind, it wasn't evident.
Something I should say here is that when another person is in a victim state, no one can force them out. You can try to get them to see themselves until you're blue in the face, but it's not going to happen. If they're not raised to find their way out, or something doesn't click with them in a unique and eye-opening way, it often takes trauma or something major to awaken them and then many just can't handle seeing themselves and go back to doing what they were doing before because change is perceived as too difficult. Lying to oneself and making excuses is easier. I recognized for the first time that I was in part to blame for the fact that I never met anyone. I didn't go out and try to meet anyone. I could've joined a dating site. I could've branched out to meet more people. I could have stopped thinking people wouldn't like me before I ever decided if I liked them. I could just be myself and see what happens.
I have to report that trying to change IS difficult. People are used to you being the you they know. It's hardest to change around family and friends - even though they're the people that are supposed to love you the most. Especially if those friends haven't had that big a part in your life. They don't mean you any harm - not directly, they are just used to you playing the roll YOU play in their life. A change for you is a change to them as well and some part of them will have a problem with you making a change. It doesn't matter if you just want to be you - there will be people who want to keep you right where you are as to them everything is a competition, and they don't want you to be successful or maybe it's because contemplating you are different than they think is just confusing or something. This is especially true when dieting or trying to get healthy but in general - when you change, it changes the friendship or relationship dynamic. Hell, marriages fail over this. I worry about a lot of things because I never want to exclude anyone and I never want to push someone out of my life as I try to become who I ultimately want to be - doing things that I love. When I worry and express this to one of my friends, she always says "Just do you Dina." She's right. If you want to be successful, you can make sure you don't intentionally hurt someone, but you also can't be untrue to yourself. It can be difficult. I don't expect my friends to be like me. I want them to be who THEY are.
I have reached this point in my life where I know who I am in the fact that I at least know who I want to be for the most part - allowing room for growth and change. I also definitely know what I don't want or who I don't want. I look at what friends or family go through in their relationships and I know I don't want to be Sally home maker or June Cleaver and I can't believe I ever wanted to. I don't want to be with someone who is overly religious as I don't like living in a black or white world. I don't want to be with someone who is less driven than I am or who can't encourage. I won't settle for someone who is emotionally, verbally, sexually, or physically abusive. I won't settle for being with a racist. I don't want to be someone who needs to look down on others to feel good about myself and yet I've been there - but I see myself and I just want to be with someone who also sees themselves and wants to strive to be better. We are all always a work in progress unless we choose to remain in a stagnant state. I have escaped the tiny box I grew up within. It was safe and I never intended to leave, but the fact remains that I did wander right out of it and I've found that I like continually pushing at the boundaries of my life. To go back in now would feel like a prison.
I think that's why no matter what, I still make attempts to diet and exercise even when it fails to yield desired results. It's just so frustrating when it doesn't yield much by way of result. A girl wants to see the fruit of her labors.
Still, I came to the realization one day that I was single and still planning to have a life I didn't have. Why keep buying things for a home when I don't have one? Why worry about buying a house when it will suck me dry of all my resources while I sit alone in it resenting everything it isn't? Why worry about not having a husband or a good boyfriend when I'm single and I can enjoy all the different complexities of each individual man that crosses my path? I can just like looking at them or talking to them or loving on them or hating on them or having fun with them. I don't have to find out a husband cheated on me or put up with the emotional abuse or have someone always telling me what's wrong with me. I can just love them for a little while and when it gets sour - move on. I can drool if they have brown eyes or blue eyes or green eyes, whether they have lots of hair in waves, curls, or a little hair - cut short and perfect, or rub on their head if they are bald. I can love their skin no matter what the color. I can rub my face and lips all over their hairy chest, or rest my cheek against their cool hairless chest. I can just see who they are and who I am when I am with them and see if he's a keeper or if when it's over, it's over. Why settle? Why make it so complicated? (Trust me I'm guilty of both and all other manner of crazy mistakes.)
With other aspects of my life, I have nothing holding me home or holding me back. I can go anywhere or do anything. I don't need someone to go with me or hold my hand. If I want to travel to some far off place, I do it. If I want to try octopus, I do it. If I want to get in my car and drive to St. Louis or Minneapolis, I do it. If I want to blow $400 on something stupid, I can do it. If I can't find someone to do it with me, I often still do it. I've overcome fears of both eating and drinking alone. I don't like it - but if you really want to do something, just do it. I can't go back now. I've started down a road that no longer seems scary. There's a new adventure in a lot of things. I do everything I can to live for these moments when I walk down that path toward something new - knowing some part of me will change because of it.
There is something to be said for a life of freedom and lack of obligation and even though I wish with all my heart I had a true husband and partner and a couple of children, I don't. This is what I have. So I will be me and I will love being me in every way I can and I will try to enjoy every minute of the life I have. I didn't do any crazy shit when I was younger but there is much I will do now. There are more fears to conquer. There is more Dina to develop. I don't know if I'll ever crack the weight loss problem and I don't think I can allow myself to let that be my whole existence. I am going to just be me and keep moving forward. There are grassy green hills in the distance - straight ahead!
So here I was at this not new but same place in my life but viewing it from a different vantage point, realizing things aren't so scary as I always thought they would be, and being this woman who did everything for herself, I looked back on my life with shame at the time I wasted waiting for something to happen - dreaming about things. I had a step-Aunt once who told my Mother that "I would always be nothing but a dreamer" and my Mom told me this which I always thought was cruel but the words have haunted me. Dreaming about Plan A or any plan, for that matter accomplishes nothing. When I'm at work, I didn't wait for promotions to happen - I worked hard, I found out what to do and I went for it. When I didn't like my position, I changed it. I asked myself why I didn't apply that philosophy to the rest of my life. This change in my thinking came about just before I took General Psych and I thought about how most kids take this when they're young and find out things about themselves, learn to understand their parents and other people so they can better navigate through life and that I really screwed myself by not finishing school for that reason alone and yet, I look around me at all the people I know and I think - they've all forgotten. They've forgotten that only they can change their life. Being trapped in a victim state most of my life, I'm embarrassed to say that fact never occurred to me - at least, even if it was lurking just out of site or in the recesses of my mind, it wasn't evident.
Something I should say here is that when another person is in a victim state, no one can force them out. You can try to get them to see themselves until you're blue in the face, but it's not going to happen. If they're not raised to find their way out, or something doesn't click with them in a unique and eye-opening way, it often takes trauma or something major to awaken them and then many just can't handle seeing themselves and go back to doing what they were doing before because change is perceived as too difficult. Lying to oneself and making excuses is easier. I recognized for the first time that I was in part to blame for the fact that I never met anyone. I didn't go out and try to meet anyone. I could've joined a dating site. I could've branched out to meet more people. I could have stopped thinking people wouldn't like me before I ever decided if I liked them. I could just be myself and see what happens.
I have to report that trying to change IS difficult. People are used to you being the you they know. It's hardest to change around family and friends - even though they're the people that are supposed to love you the most. Especially if those friends haven't had that big a part in your life. They don't mean you any harm - not directly, they are just used to you playing the roll YOU play in their life. A change for you is a change to them as well and some part of them will have a problem with you making a change. It doesn't matter if you just want to be you - there will be people who want to keep you right where you are as to them everything is a competition, and they don't want you to be successful or maybe it's because contemplating you are different than they think is just confusing or something. This is especially true when dieting or trying to get healthy but in general - when you change, it changes the friendship or relationship dynamic. Hell, marriages fail over this. I worry about a lot of things because I never want to exclude anyone and I never want to push someone out of my life as I try to become who I ultimately want to be - doing things that I love. When I worry and express this to one of my friends, she always says "Just do you Dina." She's right. If you want to be successful, you can make sure you don't intentionally hurt someone, but you also can't be untrue to yourself. It can be difficult. I don't expect my friends to be like me. I want them to be who THEY are.
I have reached this point in my life where I know who I am in the fact that I at least know who I want to be for the most part - allowing room for growth and change. I also definitely know what I don't want or who I don't want. I look at what friends or family go through in their relationships and I know I don't want to be Sally home maker or June Cleaver and I can't believe I ever wanted to. I don't want to be with someone who is overly religious as I don't like living in a black or white world. I don't want to be with someone who is less driven than I am or who can't encourage. I won't settle for someone who is emotionally, verbally, sexually, or physically abusive. I won't settle for being with a racist. I don't want to be someone who needs to look down on others to feel good about myself and yet I've been there - but I see myself and I just want to be with someone who also sees themselves and wants to strive to be better. We are all always a work in progress unless we choose to remain in a stagnant state. I have escaped the tiny box I grew up within. It was safe and I never intended to leave, but the fact remains that I did wander right out of it and I've found that I like continually pushing at the boundaries of my life. To go back in now would feel like a prison.
I think that's why no matter what, I still make attempts to diet and exercise even when it fails to yield desired results. It's just so frustrating when it doesn't yield much by way of result. A girl wants to see the fruit of her labors.
Still, I came to the realization one day that I was single and still planning to have a life I didn't have. Why keep buying things for a home when I don't have one? Why worry about buying a house when it will suck me dry of all my resources while I sit alone in it resenting everything it isn't? Why worry about not having a husband or a good boyfriend when I'm single and I can enjoy all the different complexities of each individual man that crosses my path? I can just like looking at them or talking to them or loving on them or hating on them or having fun with them. I don't have to find out a husband cheated on me or put up with the emotional abuse or have someone always telling me what's wrong with me. I can just love them for a little while and when it gets sour - move on. I can drool if they have brown eyes or blue eyes or green eyes, whether they have lots of hair in waves, curls, or a little hair - cut short and perfect, or rub on their head if they are bald. I can love their skin no matter what the color. I can rub my face and lips all over their hairy chest, or rest my cheek against their cool hairless chest. I can just see who they are and who I am when I am with them and see if he's a keeper or if when it's over, it's over. Why settle? Why make it so complicated? (Trust me I'm guilty of both and all other manner of crazy mistakes.)
With other aspects of my life, I have nothing holding me home or holding me back. I can go anywhere or do anything. I don't need someone to go with me or hold my hand. If I want to travel to some far off place, I do it. If I want to try octopus, I do it. If I want to get in my car and drive to St. Louis or Minneapolis, I do it. If I want to blow $400 on something stupid, I can do it. If I can't find someone to do it with me, I often still do it. I've overcome fears of both eating and drinking alone. I don't like it - but if you really want to do something, just do it. I can't go back now. I've started down a road that no longer seems scary. There's a new adventure in a lot of things. I do everything I can to live for these moments when I walk down that path toward something new - knowing some part of me will change because of it.
There is something to be said for a life of freedom and lack of obligation and even though I wish with all my heart I had a true husband and partner and a couple of children, I don't. This is what I have. So I will be me and I will love being me in every way I can and I will try to enjoy every minute of the life I have. I didn't do any crazy shit when I was younger but there is much I will do now. There are more fears to conquer. There is more Dina to develop. I don't know if I'll ever crack the weight loss problem and I don't think I can allow myself to let that be my whole existence. I am going to just be me and keep moving forward. There are grassy green hills in the distance - straight ahead!
Sunday, April 6, 2014
Wednesday Happiness
So, blood work came back and I am due for IV Iron therapy again. I'm not insane. I am not tired for no reason. I am not keeping myself awake all night long. My legs aren't only hurting because I'm enormous.
I'm NOT insane! I'm NOT insane! I'm NOT insane! I'm NOT insane! I'm NOT insane!
WOOT WOOT!!! WOOT WOOT!!! WOOT WOOT!!! WOOT WOOT!!!
NOT INSANE!
(well, not about THIS. In other ways, it's debatable.)
There is sleep and strength and happiness and exercise in my future again.
Please God, let Wednesday come fast.
Heee Hee Hee Heeeeee!!!
If I could skip, I would.
It's a skipping session in Multiple Fonts instead.
You'd think it was World Peace. It IS!
Just World Peace within my body.
I'm NOT insane! I'm NOT insane! I'm NOT insane! I'm NOT insane! I'm NOT insane!
WOOT WOOT!!! WOOT WOOT!!! WOOT WOOT!!! WOOT WOOT!!!
NOT INSANE!
(well, not about THIS. In other ways, it's debatable.)
There is sleep and strength and happiness and exercise in my future again.
Please God, let Wednesday come fast.
Heee Hee Hee Heeeeee!!!
If I could skip, I would.
It's a skipping session in Multiple Fonts instead.
You'd think it was World Peace. It IS!
Just World Peace within my body.
Wednesday, April 2, 2014
My Big Giant Black Hole
I grew up in a very traditional Catholic family. My parents grew up in the same neighborhood, went to the same grade school, and then started dating when they were teenagers. They were married by the time they were 20. When my parents went out, we didn't usually stay with babysitters, we stayed with our grandparents and drove them nuts. Sometimes I would get to spend the night at my cousins and we'd wear ourselves out playing Star Wars and then crash on the family room floor in front of the TV. I grew up very safe, very sheltered - protected from the knowledge of the outside world, sure that my way of life was the best. In retrospect, I was very lucky as something I later learned is that not everyone grows up feeling so safe, feeling so loved, never hungry, with siblings, cousins, and grandparents, let alone two parents even. I never knew how much work went into it or what my parents went through everyday to provide this canopy around us at all times. My Dad worked on his feet all day and my Mom, while I was little, was a traditional stay at home Mom. I always knew we were a little spoiled, but not overly so and certainly not by modern standards.
I hate to be clichéd but my recollection of life before puberty was idyllic. I didn't understand the world was changing, that more and more women were going to work, that there might be a chance I would reach adulthood with zero husbandly prospects, or that I'd regret not going to college. I was so naïve. I just thought I would meet my person, I would be swept off my feet, fall in love, marry, and have like four babies - two of each, of course. As if it was all pre-ordained, as if anything could ever go wrong. I thought that's what all people did and as I entered High School, I learned that life wasn't so idyllic, that love wasn't something that just happened, that your friends might not really be your friends, that you could choose wrong, that you could give your love to entirely the wrong person, feel nothing but pain or that you could learn to, after much criticism, hate and criticize yourself - give up on yourself so easily. In High School I didn't know how to try to plan for a future or which university to go to or to think of myself as having a profession. I was stuck in a different time. Someone was supposed to marry me and I would cook, and clean, and take care of the kids, and do the laundry. What did I need college for? I let myself be talked into things. I never knew how to speak up for myself. I certainly had no notion of having value as an individual with individual wants and needs. I couldn't tell you what those wants and dreams were as I always just dreamed of being a Mom. I took care of my siblings, changed my brother's diapers even - taught him to ride his bike. I had already been groomed to care for others. It was just who I was naturally supposed to be.
I made so many mistakes and hated myself for them and it didn't help that by the time I was 19, I was officially plus sized. I spent most of my 20s trying to reconcile myself with all my mistakes - make up for all of them. I tried so hard to do everything right. I hated that I knew so little of the world and that I was uneducated. I learned to like non-fiction. I had a giant hole and I filled it with everything good, cultured, intellectual, or political I could find. Fascinated, I became obsessed with religion and began to study them in great detail and the more I learned, the less I wanted to be a part of one. No matter what I did, read, absorbed, or encountered, it seemed my hole was still hungry. I read about life - other people's lives and even tried living through friends and loved ones. There was a part of me that didn't think I deserved good things because of past mistakes and another part of me that didn't know how to go about having a life or one that didn't involve having my nose in a book.
Having been harangued every day of my life for as long as I could remember about my weight, I was very ashamed of how I looked. I dressed frumpy, had no knowledge of how to be sexy or dress sexy. I wasn't anywhere near as plus sized as I am now, but I didn't feel comfortable getting dressed up or going out. I always felt enormous and like people stared at me. What's sad is that they didn't and if they did, it was probably because of my frumpy lack of fashion sense. It was nothing like these days where I have to worry what I'm going to bump into every time I walk into a room. In hiding myself from the world, I became borderline agoraphobic. I hated going anywhere where I hadn't prepared myself to go. I spent a lot of time in coffee shops and bookstores. I loved going to the movies. I wouldn't go near a bar and wouldn't dream of ever going near a nightclub. I always pictured myself as a dancing blob compared to the dancer I used to be when I was younger. I had a problem with noise sometimes and I hate being crowded and I thought people would be embarrassed to be with me. I would go out to dinner and after a couple of drinks, I would loosen up, be alright, and have a good time. If anyone changed the plan, it would cause so much psychological distress that I would almost and did sometimes ruin my own night. I always brought my own car so I could leave if I didn't want to go to the next place or if people wanted to stay later than I was comfortable with.
As I grew apart from High School friends or their lives evolved to where they had families, etc. I got over my loneliness when I formed new friendships at work. I began to go out with co-workers for Happy Hour and since it was to a restaurant with a bar, it was not as scary. I developed a friendship with a very outgoing and very patient friend who spent a lot of time going to all the places I was 'comfortable.' She was encouraging but never critical but as the years went by, I could tell she was disappointed when I never wanted to go out to bars with her - and she always asked. Eventually I went to Happy Hour with her at a local jazz bar and had a weird encounter with a guy who was
handsome and he had facial hair and all this curly black hair - like a Spanish painter type and when I went to the bathroom and came back, he had left before I got up the courage to talk to him. I was so angry with myself. Over the next couple of weeks, my friend told me how he'd been there every Friday so I finally went back, and then I went again - and then I went again. Finally, about the fourth or fifth time, she taps me and says look - there he is. I looked. I said "that's not him." She says "oh well, at least I got you out." I just looked at her... and then I started laughing. Fear conquered. I'd say I was about 34.
After that, we started branching out and I asked her to help me go through my wardrobe and we kicked out a lot of what was frumpy. I started wanting to go to new places and try new things. I had more confidence then at any other time in my life. I didn't meet many men though. In general, it all still reminded me of my first mixer where all the girls stand on one side or dance in a group and all the guys stand around until one or two people get the courage to ask someone to dance. Men didn't seem to get any courage until closing time and then even if I caught them glancing back at me all night, they would pick someone else. I began to notice that I'd get a lot of looks but men would quickly turn away after they dropped below my breasts and realized I had hips. I would have courage to smile or say Hi but I perceived (maybe inaccurately) that I could tell when they were uncomfortable if I said "Hello." I joined online dating sites but didn't have the best of luck and my emotions would get so wrapped up in trying to build something that I would often try to read too much into it or think I had feelings that I later realized weren't there and it was just that I was very lonely.
I struggled during this time with more weight gain - sometimes from dieting and failing and other times from nothing at all that I could discern. It didn't help that with every cycle, there would be a period of manic behavior where I would have mood swings and become someone else for a time before finally returning to myself only to repeat again in another couple of weeks. As the years went by, I got more courage to try to start conversations and I found I was just so thankful for the times I met people that were intelligent or who could converse about the world. Still, if there was romantic or sexual interest, it was the alcohol talking or alcohol giving them the courage to not see only a fat girl or a plus sized woman. For a time, they seemed to just see me. A person. It always hurt so much afterwards to find out it was just the alcohol talking. When I have met someone who seemed into me, even if it was not serious, but I know they desired me, it was a true gift within the context of the grand struggle.
I never imagined I'd still be single at 41 or that I would have zero children. To not be a parent is my greatest heartbreak. My only consolation is in the fact that if I were with someone and we were trying, it would probably be total hell because of the PCOS because, if you have PCOS, you often have trouble conceiving if you aren't almost completely infertile. Or, because of the thyroid issues, you miscarry. I know from my support groups that women with PCOS try for years - can you imagine being married and having to have sex based on your wife's body temperature or proof of ovulation or when your wife is having to take crazy fertility drugs that make her feel insane and have hot flashes - for years at a time? Can you imagine how she feels? She's the one going through it all. Do you even enjoy sex anymore? I can't imagine for a second what that feels like- to have the intimate enjoyment of making love with your spouse reduced to such fruitless work.
I always think about how I have so much sexual aggression, in part because of my own obsession with sex, (from being overly repressed) but also because of all the androgens - and I think about how I would love it if I could have sex often - but I would hate it if it were like that. I have watched women with endometriosis go through this also and it is not fun. However, I do think it's extremely unfair that unlike a lot of other women, I don't have to be coddled or coaxed to have or like sex, and that while I am in my sexual prime and completely wanting it all the time, I am not desirable to what feels like 99% of men. It really sucks.
Both my family and my friends were supportive of me trying to have a baby on my own. I told myself I would give myself 'til age 38 to try to meet someone but when 38 came, I began to try to imagine myself with a child and doing it by myself and aside from even trying to figure out what kind of donor or father to find/give, I knew I wouldn't want to share custody with a stranger. I knew I didn't want to make a baby with someone who's facial expressions I didn't know or whether their laugh was irritating or something crazy like that. I would sit there picturing all the little faces of the children I imagined having over the years and looking into their eyes that looked like mine or maybe my Mother's or have curly hair like mine, or whatever and just sob. I wanted them all so much. I wanted to be part of building some truly spectacular little persons, but after the crying spells would end, I would think about how I also wanted to see part of someone else in them as well - their father and then I remembered how there wasn't one and then I imagined myself telling those little faces how I was so selfish, I brought them into the world without a second parent on purpose. (& I say second parent because I don't feel families have to be only a man and a woman or that people can't adopt or use insemination, etc. I'm just pointing out what I would want for me.) I never wanted to have to explain that to them or make up stories about what happened to their father. They deserved the best
that I could give. I decided to love them enough not to do that to them - to love them enough not to have them. It just didn't seem right to me. Life is hard enough and I also worry about passing on this disease. At least in my line, it dies with me.
After I thought I was comfortable with my decision and starting to accept it, I had a friend who is also childless say that there was no way she wasn't going to be a Grandma one day. It was like a giant punch in the gut. I had been so focused on my sadness related to not being a Mother, that I never even realized this other thing that I would not have. I wouldn't have children who had what I had. I won't see my parents pickup my child and love on them or spoil them. I won't see my kids run circles around them or play tricks on them or call them Nani and Papi. I won't see them recognize if they have the same nose or hands or eyes. There won't be playtime with cousins at Nani and Papis. So extremely painful but I am learning to accept. I think though it would hurt worse to have someone in my life and spend nine or ten years trying to have a child and not being able to. At least I save someone else from watching my uterus fail time and time again even if I'm terribly lonely.
It makes me sad as I spent years building hope chests (so old-fashioned,) and buying things for the home I would someday have. I have my Grandmother's china and my other Grandmother's silver and I have no reason to use it. It just sits in boxes. It won't get passed on to my children. I refuse to put a lot of money into a home that sucks me dry of cash and then I'm trapped in it - trapped by a mortgage. I hate feeling trapped. If I can't have my dream, then I'll have my freedom to just live and blow my money however I please. Still, I try not to feel I've disappointed those around me - my parents, for example, but I know I surely must have - no matter how much they love me. They didn't want this for me - this or illness. I do feel like a failed female but I am fortunate to be able to give my love to my two extraordinary nephews and I know I make a difference in their lives and I would give them anything in the world. They get all my maternal love and I get to spoil them besides. I've figured out how to realize I'm still important and that my life is important - even if it's only so to me. In learning who I am, I also learned to make a new list of new dreams and try to make them come true. I can love and give to myself and if I can afford it, then none of my new dreams aren't within reach.
New dreams are possible whatever heartache you have. Don't give up.
I hate to be clichéd but my recollection of life before puberty was idyllic. I didn't understand the world was changing, that more and more women were going to work, that there might be a chance I would reach adulthood with zero husbandly prospects, or that I'd regret not going to college. I was so naïve. I just thought I would meet my person, I would be swept off my feet, fall in love, marry, and have like four babies - two of each, of course. As if it was all pre-ordained, as if anything could ever go wrong. I thought that's what all people did and as I entered High School, I learned that life wasn't so idyllic, that love wasn't something that just happened, that your friends might not really be your friends, that you could choose wrong, that you could give your love to entirely the wrong person, feel nothing but pain or that you could learn to, after much criticism, hate and criticize yourself - give up on yourself so easily. In High School I didn't know how to try to plan for a future or which university to go to or to think of myself as having a profession. I was stuck in a different time. Someone was supposed to marry me and I would cook, and clean, and take care of the kids, and do the laundry. What did I need college for? I let myself be talked into things. I never knew how to speak up for myself. I certainly had no notion of having value as an individual with individual wants and needs. I couldn't tell you what those wants and dreams were as I always just dreamed of being a Mom. I took care of my siblings, changed my brother's diapers even - taught him to ride his bike. I had already been groomed to care for others. It was just who I was naturally supposed to be.
I made so many mistakes and hated myself for them and it didn't help that by the time I was 19, I was officially plus sized. I spent most of my 20s trying to reconcile myself with all my mistakes - make up for all of them. I tried so hard to do everything right. I hated that I knew so little of the world and that I was uneducated. I learned to like non-fiction. I had a giant hole and I filled it with everything good, cultured, intellectual, or political I could find. Fascinated, I became obsessed with religion and began to study them in great detail and the more I learned, the less I wanted to be a part of one. No matter what I did, read, absorbed, or encountered, it seemed my hole was still hungry. I read about life - other people's lives and even tried living through friends and loved ones. There was a part of me that didn't think I deserved good things because of past mistakes and another part of me that didn't know how to go about having a life or one that didn't involve having my nose in a book.
Having been harangued every day of my life for as long as I could remember about my weight, I was very ashamed of how I looked. I dressed frumpy, had no knowledge of how to be sexy or dress sexy. I wasn't anywhere near as plus sized as I am now, but I didn't feel comfortable getting dressed up or going out. I always felt enormous and like people stared at me. What's sad is that they didn't and if they did, it was probably because of my frumpy lack of fashion sense. It was nothing like these days where I have to worry what I'm going to bump into every time I walk into a room. In hiding myself from the world, I became borderline agoraphobic. I hated going anywhere where I hadn't prepared myself to go. I spent a lot of time in coffee shops and bookstores. I loved going to the movies. I wouldn't go near a bar and wouldn't dream of ever going near a nightclub. I always pictured myself as a dancing blob compared to the dancer I used to be when I was younger. I had a problem with noise sometimes and I hate being crowded and I thought people would be embarrassed to be with me. I would go out to dinner and after a couple of drinks, I would loosen up, be alright, and have a good time. If anyone changed the plan, it would cause so much psychological distress that I would almost and did sometimes ruin my own night. I always brought my own car so I could leave if I didn't want to go to the next place or if people wanted to stay later than I was comfortable with.
As I grew apart from High School friends or their lives evolved to where they had families, etc. I got over my loneliness when I formed new friendships at work. I began to go out with co-workers for Happy Hour and since it was to a restaurant with a bar, it was not as scary. I developed a friendship with a very outgoing and very patient friend who spent a lot of time going to all the places I was 'comfortable.' She was encouraging but never critical but as the years went by, I could tell she was disappointed when I never wanted to go out to bars with her - and she always asked. Eventually I went to Happy Hour with her at a local jazz bar and had a weird encounter with a guy who was
handsome and he had facial hair and all this curly black hair - like a Spanish painter type and when I went to the bathroom and came back, he had left before I got up the courage to talk to him. I was so angry with myself. Over the next couple of weeks, my friend told me how he'd been there every Friday so I finally went back, and then I went again - and then I went again. Finally, about the fourth or fifth time, she taps me and says look - there he is. I looked. I said "that's not him." She says "oh well, at least I got you out." I just looked at her... and then I started laughing. Fear conquered. I'd say I was about 34.
After that, we started branching out and I asked her to help me go through my wardrobe and we kicked out a lot of what was frumpy. I started wanting to go to new places and try new things. I had more confidence then at any other time in my life. I didn't meet many men though. In general, it all still reminded me of my first mixer where all the girls stand on one side or dance in a group and all the guys stand around until one or two people get the courage to ask someone to dance. Men didn't seem to get any courage until closing time and then even if I caught them glancing back at me all night, they would pick someone else. I began to notice that I'd get a lot of looks but men would quickly turn away after they dropped below my breasts and realized I had hips. I would have courage to smile or say Hi but I perceived (maybe inaccurately) that I could tell when they were uncomfortable if I said "Hello." I joined online dating sites but didn't have the best of luck and my emotions would get so wrapped up in trying to build something that I would often try to read too much into it or think I had feelings that I later realized weren't there and it was just that I was very lonely.
I struggled during this time with more weight gain - sometimes from dieting and failing and other times from nothing at all that I could discern. It didn't help that with every cycle, there would be a period of manic behavior where I would have mood swings and become someone else for a time before finally returning to myself only to repeat again in another couple of weeks. As the years went by, I got more courage to try to start conversations and I found I was just so thankful for the times I met people that were intelligent or who could converse about the world. Still, if there was romantic or sexual interest, it was the alcohol talking or alcohol giving them the courage to not see only a fat girl or a plus sized woman. For a time, they seemed to just see me. A person. It always hurt so much afterwards to find out it was just the alcohol talking. When I have met someone who seemed into me, even if it was not serious, but I know they desired me, it was a true gift within the context of the grand struggle.
I never imagined I'd still be single at 41 or that I would have zero children. To not be a parent is my greatest heartbreak. My only consolation is in the fact that if I were with someone and we were trying, it would probably be total hell because of the PCOS because, if you have PCOS, you often have trouble conceiving if you aren't almost completely infertile. Or, because of the thyroid issues, you miscarry. I know from my support groups that women with PCOS try for years - can you imagine being married and having to have sex based on your wife's body temperature or proof of ovulation or when your wife is having to take crazy fertility drugs that make her feel insane and have hot flashes - for years at a time? Can you imagine how she feels? She's the one going through it all. Do you even enjoy sex anymore? I can't imagine for a second what that feels like- to have the intimate enjoyment of making love with your spouse reduced to such fruitless work.
I always think about how I have so much sexual aggression, in part because of my own obsession with sex, (from being overly repressed) but also because of all the androgens - and I think about how I would love it if I could have sex often - but I would hate it if it were like that. I have watched women with endometriosis go through this also and it is not fun. However, I do think it's extremely unfair that unlike a lot of other women, I don't have to be coddled or coaxed to have or like sex, and that while I am in my sexual prime and completely wanting it all the time, I am not desirable to what feels like 99% of men. It really sucks.
Both my family and my friends were supportive of me trying to have a baby on my own. I told myself I would give myself 'til age 38 to try to meet someone but when 38 came, I began to try to imagine myself with a child and doing it by myself and aside from even trying to figure out what kind of donor or father to find/give, I knew I wouldn't want to share custody with a stranger. I knew I didn't want to make a baby with someone who's facial expressions I didn't know or whether their laugh was irritating or something crazy like that. I would sit there picturing all the little faces of the children I imagined having over the years and looking into their eyes that looked like mine or maybe my Mother's or have curly hair like mine, or whatever and just sob. I wanted them all so much. I wanted to be part of building some truly spectacular little persons, but after the crying spells would end, I would think about how I also wanted to see part of someone else in them as well - their father and then I remembered how there wasn't one and then I imagined myself telling those little faces how I was so selfish, I brought them into the world without a second parent on purpose. (& I say second parent because I don't feel families have to be only a man and a woman or that people can't adopt or use insemination, etc. I'm just pointing out what I would want for me.) I never wanted to have to explain that to them or make up stories about what happened to their father. They deserved the best
that I could give. I decided to love them enough not to do that to them - to love them enough not to have them. It just didn't seem right to me. Life is hard enough and I also worry about passing on this disease. At least in my line, it dies with me.
After I thought I was comfortable with my decision and starting to accept it, I had a friend who is also childless say that there was no way she wasn't going to be a Grandma one day. It was like a giant punch in the gut. I had been so focused on my sadness related to not being a Mother, that I never even realized this other thing that I would not have. I wouldn't have children who had what I had. I won't see my parents pickup my child and love on them or spoil them. I won't see my kids run circles around them or play tricks on them or call them Nani and Papi. I won't see them recognize if they have the same nose or hands or eyes. There won't be playtime with cousins at Nani and Papis. So extremely painful but I am learning to accept. I think though it would hurt worse to have someone in my life and spend nine or ten years trying to have a child and not being able to. At least I save someone else from watching my uterus fail time and time again even if I'm terribly lonely.
It makes me sad as I spent years building hope chests (so old-fashioned,) and buying things for the home I would someday have. I have my Grandmother's china and my other Grandmother's silver and I have no reason to use it. It just sits in boxes. It won't get passed on to my children. I refuse to put a lot of money into a home that sucks me dry of cash and then I'm trapped in it - trapped by a mortgage. I hate feeling trapped. If I can't have my dream, then I'll have my freedom to just live and blow my money however I please. Still, I try not to feel I've disappointed those around me - my parents, for example, but I know I surely must have - no matter how much they love me. They didn't want this for me - this or illness. I do feel like a failed female but I am fortunate to be able to give my love to my two extraordinary nephews and I know I make a difference in their lives and I would give them anything in the world. They get all my maternal love and I get to spoil them besides. I've figured out how to realize I'm still important and that my life is important - even if it's only so to me. In learning who I am, I also learned to make a new list of new dreams and try to make them come true. I can love and give to myself and if I can afford it, then none of my new dreams aren't within reach.
New dreams are possible whatever heartache you have. Don't give up.
Sunday, March 30, 2014
Listlessness
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.
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.
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!
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