A bit of everything - worth a read?
So I thought I should write this now...
I am currently bloated alot..my stomach is hard and tender and if you saw me in the shops you'd assume I was pregnant.
Im also tried, fatigued, yes.
I went to the OBGYN on the 23rd...explained my pains, talked about everything thats happened since we last saw each other. I was in agony in there, my ovaries causing me so much pain he could see it. He shook his head told me I was a complexing case and that it's not fair I should live this way (NO IT'S NOT!). He said he wants to go back in, thats right operation #3 all in 1 year...on January 5th, first cab off the rank. Im not so much looking forward to it as interested to know whats going on...is it back again with avengence? What's it taking control of this time? yes- I am scared.
I try so hard to not let it have me but telling myself I have it! Like hell I do, if I had it, I wouldn't be in this position. But you know what, I have strength and determination and while I am mentally straining to cope I am determined to not admitt defeat. I really do Agree with MommyM8 - acceptance is key. But this will take time, and evidently, I have a lot of that ;P
I just can't comprehend, at 9 years old all the pain and suffering, the heavy flows and agony, that this would be why. More then anything, I can't comprehend HOW in less then a year I am here. In January I didn't have a proper diagnosis, now I'm worse off then ever, knowing nothing is going to help and my body rejecting literally everything. In January 2011 a whole year since I started my journey in this new state with doctors who knew what they were doing and my supportive partner by my side, I will go in for operation #3, oh the contrast...the irony. Do you know that I even have a dress now named "my surgery dress" - it's the most comfterble and easy dress to put on, it also is floral very much 'me' - it now has a new name, even Jase said when I was off to my colonoscopy "wearing your surgery dress I see". Accpetance is going to take some time. But I can be thankful for one thing, I am lucky enough at this young and tender age to have a partner who supports me, I am also lucky enough for family by my side. The rest of the outside world (excluding you lovely people on here) don't need to be given reasons or explanations, I've stopped caring what they think (ok secretly sometimes I DO care). If I need my heat pack it travels with me, to functions, to dinners, anywhere. If I need medication I have no hesitation in stopping and taking it. If I'm not well and have to sit out and vege the world has to deal with that. The fact is I do not have a disease with an expiary date, or should I say I do not have a disease that gives me an expiary date. I have spent more money on doctors and surgeries I could fund an around the world trip, but this is who I am, this is not me but I have learnt it is a huge part of me, and if I have to accept this it's only fair the world does too, right ladies?
Looking back, and looking forward the road has been and will be longer, but I praise the person who invented the internet, to give us all connections to one another. I know I am loved and I know others care, I am not going to be a model, or cure cancer, I am not going to walk the kokoda trail, but I am going to me a part of something just a great, I am going to be 1 of millions of women who help those brilliant and amazing doctors find us a cure, and that IS important, my friends that will be a miracle.
Much love and hugs
xxx
I am currently bloated alot..my stomach is hard and tender and if you saw me in the shops you'd assume I was pregnant.
Im also tried, fatigued, yes.
I went to the OBGYN on the 23rd...explained my pains, talked about everything thats happened since we last saw each other. I was in agony in there, my ovaries causing me so much pain he could see it. He shook his head told me I was a complexing case and that it's not fair I should live this way (NO IT'S NOT!). He said he wants to go back in, thats right operation #3 all in 1 year...on January 5th, first cab off the rank. Im not so much looking forward to it as interested to know whats going on...is it back again with avengence? What's it taking control of this time? yes- I am scared.
I try so hard to not let it have me but telling myself I have it! Like hell I do, if I had it, I wouldn't be in this position. But you know what, I have strength and determination and while I am mentally straining to cope I am determined to not admitt defeat. I really do Agree with MommyM8 - acceptance is key. But this will take time, and evidently, I have a lot of that ;P
I just can't comprehend, at 9 years old all the pain and suffering, the heavy flows and agony, that this would be why. More then anything, I can't comprehend HOW in less then a year I am here. In January I didn't have a proper diagnosis, now I'm worse off then ever, knowing nothing is going to help and my body rejecting literally everything. In January 2011 a whole year since I started my journey in this new state with doctors who knew what they were doing and my supportive partner by my side, I will go in for operation #3, oh the contrast...the irony. Do you know that I even have a dress now named "my surgery dress" - it's the most comfterble and easy dress to put on, it also is floral very much 'me' - it now has a new name, even Jase said when I was off to my colonoscopy "wearing your surgery dress I see". Accpetance is going to take some time. But I can be thankful for one thing, I am lucky enough at this young and tender age to have a partner who supports me, I am also lucky enough for family by my side. The rest of the outside world (excluding you lovely people on here) don't need to be given reasons or explanations, I've stopped caring what they think (ok secretly sometimes I DO care). If I need my heat pack it travels with me, to functions, to dinners, anywhere. If I need medication I have no hesitation in stopping and taking it. If I'm not well and have to sit out and vege the world has to deal with that. The fact is I do not have a disease with an expiary date, or should I say I do not have a disease that gives me an expiary date. I have spent more money on doctors and surgeries I could fund an around the world trip, but this is who I am, this is not me but I have learnt it is a huge part of me, and if I have to accept this it's only fair the world does too, right ladies?
Looking back, and looking forward the road has been and will be longer, but I praise the person who invented the internet, to give us all connections to one another. I know I am loved and I know others care, I am not going to be a model, or cure cancer, I am not going to walk the kokoda trail, but I am going to me a part of something just a great, I am going to be 1 of millions of women who help those brilliant and amazing doctors find us a cure, and that IS important, my friends that will be a miracle.
Much love and hugs
xxx
Replies
Dear taters - you write beautifully. I am so sorry you are in such terrible pain and have to have more surgery. I hope the doctors take the best care possible of you and keep you as comfortable as you can be. My heart breaks that someone so young has to go through this, and then I remember. I was you, once. 20 years old, in agony. Everyone told me nothing was wrong, it was in my head. But I kept fighting and eventually, I was believed. I am not well, but I am wise. I deal with this disease in the best way I can. And I am here to listen, to offer support, and to connect. Thank God for this group. I am so impressed by your honesty, openness. This disease has its gifts - a share of compassion is one. Wisdom is another. My prayers are with you.
Thankyou MommyM8 I am so glad you read this as I have a mention of you! I am just in such discomfort right now from pain and my tummy being so swollen it hurts =( I am so lucky to have you all! Wonderful inspirational women! It\'s women like you who have helped women like me not be left so long for a diagnosis and I thank you :) your persistance has paid off, hopefully we can all push for a cure!
xxx
My dear sweet Taters.. reading this breaks my heart but you have so much hope left in you which will take you far.... Im sorry you are suffering so much i hope this third op gives you some relief and soem answers.. soemtimes just knowing what is going on helps so much. You know im here anytime of the day of night for you as you are for me, to listen, or just to let you cry to.... i love you xoxoxo
Thankyou Brooke! So blessed to have you in my life!
xxxoo I love you too!
Taters, you are so amazing! I\'m so sorry you\'re having souch a hard time. You do, like you said, have so much strength and determination, and that is why you are going to defeat this. Maybe not today, and maybe not tomorrow, but one day we will be better. Who knows, maybe that miracle of a cure is just around the corner? I do hope that you feel better soon and that your doctors help you with the upcoming surgery!!!
Sweet Tate, my heart goes out to you. You shouldn\'t have to be in such pain, no-one should. You are so brave, hon, and you eat this - not sure when or how, but you will win out, I know.
Sending love, hugs and strength your way
Angel xx
Thankyou ladies :) so much *hugs hugs hugs!*