Thoughts on having 20 years with PCOS

Gift · 12-07-2002, 03:13 PM

It has been some time since I last posted here. I think I stopped coming for a while because people seemed to rage against each other instead of against this disease. I understand how frustrating it can be to have PCOS, having struggled with it since I was 14. I will be 35 tomorrow, so I guess that is 20 years now.

I'd like to share some of the things I have learned in 20 years of struggling with PCOS. I invite you to share what you have learned as well.

I've learned:
- I am not my disease. I am a woman who is strong and beautiful. I have a responsibility to not give in to my illness, but instead rise above it and find freedom from labeling myself. I do not define myself as someone who is ill, but as someone who seeks a solution.
- I am not a failure. My struggles to lose weight, my struggles to give birth to a child do NOT define who I am. I am no less of a woman simply because I am a food addict, nor am I less of a woman because I have not yet had a child.
-Miracles happen. Granted some miracles need a little help. I go to OA to deal with my food addiction problems and I am going to doctors to cope with my fertility issues. There is no reason to think that God, the Universe, the Goddess (or however else you may choose to define the Divine) should be working alone in producing a miracle for me.
- I am not a victim. I once heard that when we are angry we are the weakest. It is when we are most caught up in victim mode. At 35, I can no longer afford to sit around in a "poor me" space. My childhood abuse, my weight, my fertility are only issues in my life. They are not my whole life. I have a choice in how I approach those issues. I can acknowledge them and accept them as a part of who I am, or I can sit and allow them to drag me down into despair. I choose to accept that life has dealt me some difficult cards, but they are not every card in the hand I am carrying!
- I have value . My words, my thoughts my abilities have value. I would much rather focus on the things I can do versus the things I can't. In the end, I am a much happier person because my focus is on the positive.
- it's okay to have a crappy day . It's okay for me to have a day where I don't feel okay. It's okay occasionally to be blue and to feel frustrated. That is natural. Letting those feelings take over my life is not okay.
- If I can accept where I am in my life, I can accept where others are in their life . This is so difficult for me. I want to change people. To make them see my point of view. It has taken me a long time (and I still struggle with it) to allow people to be exactly where they are in their own journey. We all find our way in our own way. It's when I start to insist my way is the only way, or someone else insists their way, or their beliefs are the only way that I get frustrated. I'm learning to accept that if that is where they are in their life then that is perfect for them. But it is not my job to judge them OR MYSELF on where either of us are on our journey or where we might be going.
Last but not least,
I am not alone. I can ask for help at any time. It took me a long time to realize I could ask for help. I really thought I had to do all this alone. I have since developed a relationship with my understanding of the Divine, I have friends who support me, I can come to this site any time I choose and share my thoughts and my feelings. There are a multitude of ways to reach out and connect and not feel alone on my journey. Even though in the end, each of us has to deal with ourselves by ourselves, there is a wonderful world of resources out there to help us do that. We do not have to cope with our lives alone.

I'd love to hear from you ladies (and gents) about what you have learned on your path so far.

peace

Lisa67 · 12-10-2002, 01:09 AM

Welcome back, Marykate. I hope you will make it a habit of posting again! It's nice to see an oldie return! **I'm not saying that because it's you're turning 36 either!

**

What I have learned on my journey....

I know who I can count on. I know which family members, friends, and cysters I can go to for help or just to B****! Some family members think they are helpful when they're actually just NOSEY! So, I have learned to give them bare minimum facts and that'll shut them up!!

I am my own advocate. My doctor may think she knows everything about PCOS, but I think she is sometimes wrong! If I want to go to an endo for more treatment that's MY choice, not her's!!

I don't need food for comfort. I have plenty of other options!!

That's all I can think of off the top of my head! Thanks for bringing this subject up! It's very thought provoking....

Gift · 12-12-2002, 04:44 PM

Lisa,

I agree! Thanks for your ideas! I really liked the "I am my own advocate"! I thought that was very powerful! I forget that sometimes. I read a really great article in this month's Oprah magazine about being your own 'medical' advocate. You might want to check it out!

hugs

curvaceous_angel · 01-12-2003, 02:57 AM

Ok Here is what I have learned in my years with PCOS (not sure how long I have had it but I started getting symptoms when I was 9)

I am stronger than I thought: I used to sit and think why me? and I would cry over everything that was wrong with me. But as I have gotten older I have learned to deal with what is wrong and accept myself. It has taken alot but I have finally gotten comfy with myself and in doing that I realize I am not weak.

Family will always be there: Through all of this my family has stuck by my side even though there have been times when I know it was hard. My mom has always told me friends will come and go but family will always be here and its true. Thats one piece of advice that I live by now.

There is help: Once I found SC I knew I wasn't alone and that was a big relife. I found the information I needed to make my life and health better. If I hadn't found SC I would have never gone to my Endo or learned as much as I have. I wouldn't have my cysters to help me when I need it and I wouldn't be here to help when I can.

Viviana V · 01-21-2003, 06:14 AM

MaryKate,

I want to thank you with the deepest sincerity. I just found out last week that I have pcos. Since thursday I have wanted to do nothing more than play "poor me". Your post gave me so much hope and inspiration to not let my mind take over my life in the way I've let it the past few days.

I "Can" be stronger than I think. I will try my hardest to stay strong mentally. I will try to stay focused on becomming healthier to manage my pcos

I am not alone. I have friends and family who love and support me. I have my cysters who know what I'm going through and I will do my best to be supportive of them.

This is all for now. The DX is all too fresh in my mind. But this is soooo what I needed today and for the future.

icsurreal · 02-09-2003, 08:10 PM

I've been avoiding this site for the same reason of late. I have wonderful things going on in my life right now and still to come. I entered into my first art show and got in. It was the most exciting day of my life. To see my work up on the walls. It was a pivotal point in my life. I realized that I can do and continue to do everything and anything I choose. I know that they wont go away, and neither will I.... Time marches on and I'm going with it. I've sat to long on the side lines afraid to get into life, but not anymore.

Ms_Peaches_01 · 02-09-2003, 09:47 PM

Thanks for starting this tread Gift. I am so sick of coming to this site and seeing nothing but rant rant rantings about Affirmative Action and Michael Jackson. People are doing nothing but cat fighting about things that have nothing to do with PCOS, and whining but not trying to find any solutions. I'm glad that we're finding ways to have positive outlets on our website.

I've learned some things too...

It's okay to love yourself unconditionally
Its okay to not be trying to conceive and to not be obsessive about it
I deserve the best treatment available to me
It's okay to seek support from peers, and ditch the people who can't understand
I have to work hard, eat right, exercise, and advocate for myself in order to get well
I can be powerful if I do my own research

Thanks again for this great tread

icsurreal · 02-09-2003, 09:48 PM

I've been avoiding this site for the same reason of late. I have wonderful things going on in my life right now and still to come. I entered into my first art show and got in. It was the most exciting day of my life. To see my work up on the walls. It was a pivotal point in my life. I realized that I can do and continue to do everything and anything I choose. I know that they wont go away, and neither will I.... Time marches on and I'm going with it. I've sat to long on the side lines afraid to get into life, but not anymore.

Gift · 02-12-2003, 08:47 PM

Just wanted to share how much I have enjoyed all of your replies! Keep them coming!

Many hugs,

marykate

Olympia · 02-23-2003, 02:24 PM

Love this thread

It is very refreshing! I think there's an overload of self pity going on on this board and it feels good to read threads like this.

I have to say that I have learned so much about myself, the world around me, who I want to become... in the past few years and especially in trying to heal myself. It has been uncomfortable and I have let it hold me back from alot, BUT...it has ALSO taught me so much. I wouldn't trade what I've gained from all this for ANYTHING. I'll wonder why *I* had to walk *this* path to learn what I know now, but that answer will come in another time, another place..

Let's see...what have I learned...??

1. Misery is Optional: There will be times when I feel near rock bottom and there will be times when I feel on cloud nine. I can't always control how I feel and when I feel either way (and all in between) but I can control HOW LONG I stay with that feeling. I am NOT at the mercy of my emotions. They will come and go and I decide how long they stay or how fast they leave. It's all about choices.

2. My living human body is a miracle itself and I shouldn't underestimate it's power: My body is a magnificent piece of work at each and every stage of my existence whether I feel it or not. With my cooperation, it can heal.

3. Watch what/who you surround yourself with: I've found that complaing too much weakens my resolve to get better and increases self doubt.. Plus it just gets old. So I try to limit the time I spend with others who are constantly feeling sorry for themselves or complaining about everything that's wrong in their life - also those who encourage others to complain and feel sorry for themselves often. I don't want that to be the common bond I share with friends, associates, etc..

4. A tough situation doesn't mean your world is crubmling: 'nuff said.

5. I shouldn't divorce myself from my environment - it is as much a part of me as I am of it and when I harm it I harm me: My quest to heal has opened me up to care more about my environment and how we (as a people) are helping and hurting it. I read alot more about how "environmental toxins" are contributing to our ill health.. I refuse to believe that everything man creates and everything "not natural" is somehow toxic, but I do think we should be more responsible about what we create and how it affects our world.

6. Your thoughts, beliefs, & attitudes play a huge role in your well being - 'nuff said.

Thank you all for such an uplifting thread. I hope more will add - including lurkers who like to stay in the woodworks!

Have a great day!

-Olympia.

Gift · 03-05-2003, 08:45 PM

Just wanted you all to know how much I have enjoyed reading what you have said! Thanks!

I've found each item resonate with my own spirit.

Keep posting!
MaryKate

puffin2424 · 03-05-2003, 09:12 PM

Well let's see.I have been living with this for 7 years now.After dx I didn't do anything to change my situation,but at that point I had verry little knowledge of my situation.Now thruogh this use of a computer I have learned so many things.I'm finally at the point were I am ready to do something about it.Here are some thing's I have learned.

1.It's okay to focas on me.I don't have to feel guilty for focusing on myself.I have never allowed myself to focus just on me,there was always someone else who had my attention.
2.I am the only one who can truely bring myself peace.
3.I am strong and I have the power to get me where I need to be.
4.To listen to that little voice in my head:Every time I have been in a relationship I have always ignored the feeling that I need to be on my own for a while,by not listing to myself all of my relationships have sufferd .I have to do this.Even if I am affraid to.
5.God won't let me fail if I try hard enough and believe he is watching me.
I think that's about it.I am about to do what I am affraid to do,but it's also what I want and need to do.Work on me before I can have a successful relationship with a significant other.

KYBluegrass · 04-07-2003, 09:21 PM

Well said....very well said! I have had PCOS for 24 years, and it's amazing how much your list is like mine. I have made the choice that PCOS is a part of my life...not the substance of it. It is just one thread in the fabric of who I am. Having PCOS has also put me in a position to help others who were up til now undiagnosed. I guess I never looked at PCOS as a problem...I looked at it as an answer....up til now, I had no explanation of why these weird things were happening to me, but now I know why, and what to do about it! MaryKate...thanks for your words. That ought to be posted as a sticky on top of ALL FORUMS.

squidge63 · 04-07-2003, 09:49 PM

I too have had pcos for over 20 years its so long now i cant remember if it was 1981 or 1982 that i was diagnosed.. or maybe its old age creeping up and stealing the lil grey cells...lol
I had never met anyone with pcos until about 3 years ago, so all that time i thought i was the only one ... on occasion it has got me down, but on the whole i just got on with life.. so i am hairy deal with it, i have been hairy since about the age of 8 so i thought it was normal, and to this day i only shave my legs for the summer months.. apart from when i went out with guys ( i used to shave my legs then i think they would have been jealous as i was usually hairier than them.. a few of them said oh your hairy and then would think nothing of it..)... the worst culprits for making you feel bad are heterosexual women i have found... i knew i was gay at 14 but was too scared to go down that road way back then.. it took me 20 years to come out and it was so refreshing for once in my life to be accepted for who i was, and not one of my gay friends has said a word about my excess hair its as if its not there, and its the same with my gay male friends (some of whom are jealous that i have more hair than them...lol).

I am me and i dont have to feel guilty of not fitting in with the so called "norm" of this world.
I have alot to offer the world, if people look at me and think different because i stray from the "norm" it hurts but i know its their loss...
Some days you do get down but then thats life and no1 can be expected to be happy 24/7... there are many disappointments in life, but looking back there are also many happy times and these are to be cherished.
My health is not the best and i seem to get over one hurdle and the next one springs up.. i have got used to baffling the medical world now and just wonder what will be round the next corner.. i may have alot of problems but there is always someone worse off than you, and may not have had the opportunities that you have had.
I am so glad i found this site as i never realised so many women had pcos and it has been a great help to know that i am not the only one going through the same symptoms etc......

Squidge

Gift · 04-08-2003, 12:38 AM

Ladies,

Thanks for keeping this thread alive... you have written such wonderful things... I wish we could put a book together... you know? One that shows that PCOS doesn't beat us or win. That we all have days where life with PCOS stinks, but we dust ourselves off and push forward.

Thank you all for adding your inspirations!
much love and light to you all!