My body: a hate, hate, relationship. June 29, 2010

I am making several changes in my life and trying to add exercise and make healthier choices to get in better shape. I received an email telling me not to hate my body no matter the shape it is in. I feel I have no choice but to hate my body.

After almost 35 years I’m more comfortable in my body than I have ever been, but that doesn’t make me like it any better. For 33 years have I taken care of my body and for 21 years has it betrayed me over and over. The weight gain when I made no changes to my eating and exercise habits, the years of having to shave my chin because it decided not to function properly, the mental and emotional scars I have to live with because something went wrong somewhere and the body I counted on and cared for for 12 years decides it doesn’t want to work anymore.

That is not even taking into account the ever increasing medication load as more and more fails to work right. I have been forced to let it go the last two years because my mental status, half of which is caused by my body, has deteriorated so much that I am having trouble with basic functions. I take over ten prescription pills a day, and still fail to live a normal life.

I define my body as a toxic relationship. Anyone who I spent 33 years caring for and they spent 21 years betraying and failing me would be dropped out of my life before they could say ‘sorry’.

I know that it will never live up to the expectations I have for it, but it doesn’t even try. Nevertheless this is one toxic relationship that I have to continue with. I have just increased my exercise to include tai chi classes and will be increasing it again in July. I think I’m going to add morning rollerblading sessions.

I am motivated to change it because I hate it.

New Month, New Start April 28, 2010

Well I’m back and recovered from my vacation. It took a while to get used to living alone again. It is so hard to make friends. I don’t even know where to look anymore.
I was planning to get a lot more done in April than I did. I slacked off going to the gym, put off cleaning, and ate too many not so good for me foods. Then my file was pulled for an experimental program at Greater Nashua Mental Health, where they will do exams and blood-work every three months for the next year. There are looking at the whole person not just the mental illness. My numbers were horrible. My non-fasting glucose was over 300 and my blood pressure and pulse rate were high. They called my primary care doctor who woke me up at 8:30 in the morning. Now they want to see me for more blood-work.
But it is a new month and I am starting over. I have to reign in my eating I pulled out the cookbooks and recipe box. I have finished a meal plan and generated a shopping list. I even cut a couple of coupons. My eating has gotten worse over the last several months. I am not making healthy choices nor eating in moderation. March was good only because I was not doing most of the cooking and April has been a lot of frozen meals while I procrastinated running errands and skipped the gym.
I will get to the gym more often in May. Given this month that won’t be hard. I have it scheduled into my date book and have booked all other appointments around it.
I have also made up a regular shopping list of what needs to be purchased next month, and what I want to buy. I only really need to replenish the emergency fund that was spent and get a game card for World of Warcraft, though I suppose that is only truly necessary if I want to play which I do.
I need to grab a couple of boxes and repack the miscellaneous kitchen items that have piled up. Most of my kitchen is still packed because I don’t have room for it in my current apartment. Once in a while I unearth something to cook with and it gets piled in a corner. But I have 2-3 med sized boxes of stuff that needs to get repacked. My room is a giant mess. I have to pack up some of the books too they have overflowed the bookcases onto the nightstand, dressers, floor, and the AC which needs to be cleared before installation June 1st. It is hard to believe looking at my room that I read mostly online fan fiction.
I’m hoping that May will be a great month.

One of the lucky ones March 29, 2010

Hi my name is Autumn I live in New Hampshire. I’m 34 years old, still single, and have no children.
I became menstrual in Georgia on the road to Florida on a family vacation. After convincing my father that I had to stop to use the bathroom again he freaked out when my mother told him what happened. I was 12 and he was not ready. I had always been thin but after that the weight just piled on. I had irregular cycles for the first year skipping months at a time. My mother asked our Primary care doctor and he told her it was normal for girls who are just starting and if it was not straightened out by age 15 I should see an GYN.
Three months before I turned 15 I was hit by a car walking home from school. My period disappeared for over a year. When it returned it was just as irregular as always. Dr. Mark told us that this was not unusual due to the trauma on the body and if it had not straightened out by 18 to look into a GYN.
Needless to say at 18 I saw my first GYN. She was awesome and was very sensitive about my nervousness having that kind of exam. She sent for blood tests and checked my thyroid among other things that could cause the weight gain. The tests came back PCOS positive.
She put me on Metformin and Birth Control pills. I went from two cycles a year to two cycles a month. OH HELL NO!! I stopped taking them after two months and she tried a few different brands till I found one that gave me a cycle every month. Too much in my opinion. I took this for a few years and then I stopped because I was annoyed at getting a cycle every month. Especially since I didn’t need them for their primary function. I have never taken them since and have yet to fall pregnant. I have not actively tried to conceive but do not prevent. I would like to have a baby someday but as the years pass it is looking less likely it is going to happen without medical assistance.
Now at 34 years old I am morbidly obese, have excessive hair growth on my chin, sideburns, and arms. I have to shave from ear to ear every other day. I am horribly embarrassed by my body and spend a great deal of time isolating myself.
I also have severe depression with psychotic features. My depression is triggered by my PCOS as well as a life changing event that I still have yet to get over. This does not help my isolation because I am in the small percentage of people who have hypersomnia as apposed to insomnia. The more depressed I am the longer I sleep.
I was recently diagnosed diabetic and prescribed yet another pill (Januvia). I also take Metformin for the PCOS antidepressant (Prozac), an anti-psychotic (Invega), a med for high cholesterol (Simvastatin), and a stimulant to keep me awake (Ritalin).
My blood work numbers are normal when I am medicated. I have tried a few times to lose weight and have succeeded and failed. I do go to the gym once or twice a week though that is due to be upgraded in April.
I am on vacation right now and just posting an intro. I feel I was very lucky to be recommended to a great doctor who found the PCOS right away. It has gotten worse over time as I fall deeper into a depression. It has started affecting my mobility and so I’m making plans to counteract it.

Julie’s PCOS Journey March 27, 2010

Hello everyone, I’m Julie. I’m currently 31, I have been married for almost 7 years, together with my husband for 9.

In July of 2003 I was a newly wed of 2 and half months, and as we had been together for 2 years already, we decided to start trying to conceive. After 5 months of no periods and big fat negative pregnancy tests, I went to my doctor. She was stumped, and sent me to see a specialist.

I had NEVER heard of PCOS before. I walked into the office, the dr looked at me, asked me a couple of questions, and said “Yep, you have PCOS, look it up online, and call me when you’re insured and ready to get pregnant.” Obivously he’s not my dr amymore after that!

I have tried Metformin, Actos, diets, to help with my PCOS symptoms. I suffer from lack of periods, hair loss, skin tags, obesity (I was 364 pounds before my weight loss surgery), infertility, depression, high blood pressure (also pre surgery), and hirsutism (which is male pattern excessive hair growth) on my face, stomach, and arms.

Emotionally I’m having the most difficulty with the infertility aspect of my PCOS. I want nothing more than to be a mommy. The depression and emotions that my body is broken, I struggle with feeling like a failure, because I am supposed to be a woman, and women have babies, and after 6 years of trying, (we took the last year off to recover from weight loss surgery) I’m still waiting my turn. . .

I also have major bouts of depression because of my hair loss. I used to have very long, thick, beautiful hair. I couldn’t put a large pony O around my ponytail more than twice. . . now I can wrap a small one around like 4 times. I was defined by my hair, and I feel naked and lost without it.

So for those of you out there reading this and nodding your heads, remember you’re so not alone in your personal POCS struggles. There is a whole world of women out there who really do understand how you’re feeling!

Dealing with family March 27, 2010

This obviously doesn’t apply to all of the cysters, but I’d like to talk about the issues of dealing with PCOS and our families. Most of them don’t understand, at least in my life it’s true, and don’t try to understand.

Mainly my frustration at the moment is with family and the issue of infertility. Like I said, not all of us are facing this, but many are. It’s to the point of wanting to avoid family gatherings so I don’t have to face the questions of when we are having children. I’ll admit that I haven’t shared my PCOS with ALL my family, as I don’t feel it’s something they ALL need to know. But even worse than the family that is ignorant to your condition, is the family that knows about it and pretends they understand.

I mostly deal with this from my in-laws. I am the only adult, married person in that family that has not had a child, and for that I am viewed as an outcast. I am ignored when the talk turns to children, as it always does, and even worse is when they openly stop talking about it for fear of hurting or upsetting me. While I appreciate that they care, I think it makes the situation worse. Whether or not I am trying to have children is my and my husband’s business, and I don’t feel the need to share it.

I’m sure that I’m not alone in this frustration. I’ll admit that this blog post may seem like more of a rant, but some days we just need to rant.

Hello Cysters! March 19, 2010

Welcome to Cysters United! I’m Barbara, and I was diagnosed with PCOS at 17. Now at 21 I’ve faced only a few of the trials that women with PCOS face everyday. A week or so ago I was doing more research about our shared syndrome, but unfortunately none of the information I found was what I was looking for. All of the books published out there concentrate solely on dieting, how to get pregnant, and what PCOS can cause later in life. I have that information already, and I’m sure many of you do as well. What I was looking for was information for women with PCOS by women with PCOS. I wanted to know what other women had gone through while dealing with it. I wanted to know how they handled things:  criticism about their weight, questions about when a baby would be on the agenda, callus remarks from strangers, doctors not really listening, etc.

Then after posting on my own blog about this lack of personal input from women like us, a friend said we wouldn’t find anything like that out there unless we did it ourselves. As a result I asked for help from her and from the other women in a small yahoo-group that we’re a part of. So here we are creating this blog for women with PCOS, by women with PCOS, about everyday life that doesn’t revolve around rules for dieting, treatments or suggestions on how to get pregnant, doomsday prophecies of diabetes and cancer, or doctors who no longer care about patient well-being beyond their own bank accounts. After all, we’ve heard those shpeels a thousand times over already.

Barbara (pezzdemon)