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Dear Community,

Our tech team has launched updates to The Nest today. As a result of these updates, members of the Nest Community will need to change their password in order to continue participating in the community. In addition, The Nest community member's avatars will be replaced with generic default avatars. If you wish to revert to your original avatar, you will need to re-upload it via The Nest.

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Hi guys, Newbie here!

Hey, guys!

I have been a big time lurker on this board but haven't found an area that really clicks for me. Since i was born and raised in ATX, i figure why not? My name is Kathy, i used to work in daycare, but i totally changed my path in life, went back to school and became a medical assistant. Work for an awesome doctor, get paid good and love what i do! I have been married for 3.5 months to an AMAZING guy, and when i say AMAZING, i mean it. He has been my rock through EVERYTHING! My mom had a heart attack AND triple bypass christmas eve the year we were married. (2008) We have been through so much, he was laid off at our married 7 months mark. He has gone to appt after appt with me. My little brother got addicted to pain meds and knocked off three pharmacies, christmas of 09, went with me and my brother's gf (now ex) every saturday to visit him. Has been so good about keeping me calm and happy no matter what. He is just such an amazing man.

I was DX with acromegaly in sept (which is caused by a benigh tumor on my pituitary gland.) 2011. Basically it causes organs to enlarge, facial swelling, infertility, enlarged hands and feet and if not caught in time, 43 is about the max of life. luckily my tumor was found when i was 17 and has been watched, i am only in the begining stages of it, my growth hormone should be in the 200's for my age, mine is 400-600. So i got word 12/20/11 that i am having surgery 2/8/12. I am mostly posting this, in hopes that someone on this bored MIGHT have/know someone who has the same disease that i can talk to. I know it's a LONG shot, considering it's 1 and 25,000. I really just despretly want someone i can talk to, or relate to in any way. My endrocrinologist is treating 7 other people with this disease, but i know b/c of HIPPAA she can't release information. Everytime i go to this dr, or that, i have to EXPLAIN to the MD, what my disease is. I am looking for someone to talk to, to relate to. I could always post at "getting pregnant, or TTTC, but i feel they can be mean. I literally, after almost 3 years TTGP, i haven't gotten pregnant AT ALL. So if someone wants to talk, can relate in any way, or knows someone who was had transsphenoidal surgery or anything like it, please ease my mind! I feel more alone than i ever have, in my life. I have 20 days and i am terrified of not waking up, or them having to take my entire gland out, which would result in me never getting pregnant. I have wanted to be a mom for as long as i can remember! My DH is so awesome with kids! I am so ready to be a mom. :-) Sorry for the crazy post, i just need someone to talk to.

Re: Hi guys, Newbie here!

  • sorry for all the spelling errors! I meant 3.5 YEARS, not months.
  • Welcome to the board! Do you know of there's an online community somewhere for the disease? I don't know about your specific one, but some people I know with rare conditions have been able to find some great support and information online from other people in the same situation.
  • Thank you. Yeah i kind of figured I would get this response. I have a very rare disorder and i knew it was a long shot. I am on this community on fb, but like everyone who has this disorder lives pretty far up north. I found this pituitary support group that meets the second thursday every month, but most of the the members have what is called a prolactinnoma, basically your body thinks it constantly pregnant. Thank you for responding though. I think maybe i will hit up the TTTC board, or just be around. :-)
  • Hi Kathy!  We know each other! ;-)

    Welcome!  This is a great place to hang out!  The baby board is a bit more active if you want to check that out too!

    [My Domestic Addiction]

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