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07-05-2014, 10:46 AM   #61
Orchid
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The studies for Lumacaftor have all been extremely promising: in every case of CF based on Δ0508 the progression of CF has stopped. The slow spiral of lung damage and the clearing of mucous from the air passages has caused serious improvements in patient lung functioning, up to 7.3% in some cases. She'd still have CFRD (Cystic Fibrosis Related Diabetes) for the rest of her life and about 50% lung function, which could improve up to nearly 60% based on study data but she'd still see massive improvements in quality of life. I'm imagining her able to sleep through the night, every night, without Zaleplon because she's not hacking and coughing in her sleep, not having days so bad she can barely move because her lungs are some sort of horrible salty grotto for every respiratory disease known to man, and most importantly, living to be old and gray with me.
07-05-2014, 11:44 AM   #62
Orchid
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There was always a part of me that...whispered, in the dark of the night when we laid together, or in our happiest moments.

"Don't get too close, she's going to die young."

She's my fiance and the love of my life so the voice hurts so much to imagine watching her die and how'd it feel to bury her. It was from a really mechanical, defensive, part of mind. That part I've been trying to grow past being ruled by. We've talked it over a lot but this helps so much in making it quieter.
07-06-2014, 04:53 PM   #63
Orchid
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So I get to come out to my fiancee's parents as female tonight, and tell them we're engaged AT THE SAME TIME. It's going to be an awesome dinner, I could sell seating to this shit.
07-06-2014, 06:57 PM   #64
nogutsnoglory
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I'd like to buy a seat because I love people's reactions and psychoanalyzing everyone. Do they know you as male currently or just know you as female but don't know you were bio male/assigned male at birth?
07-06-2014, 11:18 PM   #65
Orchid
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Went better than expected, there was only one screaming match! Her mother hates my guts now but her father, who liked me even when I was a morose broody man who never smiled, was curious, a little confused, but ultimately open to it. He screwed up my pronouns a lot but always corrected himself and apologized and he was very good about my name. Which is more important to me because I hate my old name so much it hurts.
07-07-2014, 02:23 PM   #66
jwfoise
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R got into a study for Lumacaftor, the drug that treats the genetic error that causes her CF, Δ0508. It's the most common form of CF. We spent all night celebrating! It means she has a chance to live a longer, healthier life, and may never need a lung transplant. I was so happy I ended up crying in her arms, it's like my prayers have been answered.
Awesome. Hope it works out.
07-08-2014, 02:59 PM   #67
Orchid
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Was supposed to volunteer today but R is having a very bad day, so I called in sick so I can take care of her. She looks so small and scared when she's sick.

Last edited by Orchid; 07-08-2014 at 07:03 PM.
07-09-2014, 11:52 PM   #68
Orchid
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I just cooked what I think are the best scrambled eggs of my life. Scrambled dry and a little gritty, just how I like it. Spiced with garlic, sea salt, and black peppercorns. Mixed with pickled carrots and habaneros pickled in my secret pickling mix (teasers, it also has garlic/cinnamon added and the habaneros and carrots are pickled together in it and is insanely dill) along with actual dill pickles from pickling mixture. And finally topped with yellow mustard and Blair's Megadeath hot sauce. It was sour and spicy enough to get five stars from both of us and chase Lithium out of the bedroom with the capsaicin fumes. It was just crunchy and grindy enough to be pleasant and the sheer assault of sour and peppercorns masked the heat until it sucker punched you about a minute later.
07-13-2014, 02:54 PM   #69
nogutsnoglory
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"Intersex expedition". I likes the title change. Sounds so adventurous! Sad thing is most probably have no clue what intersex means. I hate when people say hermaphrodite as that's not only biologically impossible but also offensive to people who are intersex.
07-13-2014, 03:04 PM   #70
Orchid
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I have Klinefelter's. I think I forgot to mention it in this thread because the diagnosis came during a really busy part of my life where R and I were just starting to get back together. It's a genetic condition where I have an extra sex chromosome. Instead of being born XY, like most assigned male at birth, I was born XXY. I had my suspicions for a while. I barely gained masculine features in puberty, look 15 at 23, have the classic unnatural reedy long limbs of those with intersex conditions, have an extremely soft round face, low energy levels, coordination issues, and other signs that can't be discussed in polite company. My endo thought I was being a hypochondriac and it was amazing to watch him stuff that crow in his face when the karotype test came back positive. Being intersex instead of transgender means the insurance company suddenly has to bend over backwards for me since there a different laws applying to those with intersex conditions.
07-13-2014, 03:07 PM   #71
nogutsnoglory
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You mentioned it somewhere but possibly another thread. Is it just a simple blood test? If so, all trans people should probably have it checked out because i have heard quite a few times of trans people who didn't know they were intersex and it may help with medical options for both those who are pre/post and non op.
07-13-2014, 03:15 PM   #72
Orchid
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Yes, a karotype test is where chromosomes are isolated and stained with suitable dyes. A researcher then uses their highly sophisticated ocular interface to observe the resulting chromosomes. Intersex conditions have been recognized for much longer than Gender Identity Disorder and so there are a different set of laws and requirements around them even if this has little effect on my actual life. I've been told as a result I should regularly consult a cardiologist to catch aortic valve problems early, but otherwise, still the same nerdy reedy redheaded girl. They sent back a cool picture that I kind of want to have blown up and put on my wall.
07-14-2014, 03:13 AM   #73
Orchid
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I'd just like to say I hate insomnia.
07-14-2014, 03:39 AM   #74
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I will echo that sentiment.
07-14-2014, 11:20 PM   #75
Orchid
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So today my best friend and I had a huge argument over things best not discussed in public, suffice to say it involved my engagement. She made me choose between her and R, and that was an easy choice but still a painful one - we're not friends anymore. It's going to be amazingly awkward since we enjoy many of the same local food places and most of our close friends are shared. Asking someone to make that choice is horrible, how can you not know how it will end? I feel like crying, she's someone who helped me through so much and now we'll never watch bad anime again together again, or get burritos at 3AM for the hell of it, and she won't get to come to our wedding - I was going to ask her to be my best woman.

And that's what hurts the most.
07-15-2014, 05:48 AM   #76
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Uh, yeah, that kind of question is loaded like a nuclear warhead. =\

Maybe this person will come around at some point, and realize that losing you as a friend hurts far more than whatever they were upset about.
07-15-2014, 08:56 AM   #77
Kero
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Sorry to hear of your BFF breakup I think breaking up with a friend is even harder than with a SO. Big (((((hugs))))) to you Orchid
07-15-2014, 09:51 AM   #78
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For what it's worth, I had to break up with my best friend a couple years ago. She was a compulsive liar and she created so much drama - I'm much better off now without her in my life. Yes, it sucked for awhile and I did miss her at first, but in the long run it was absoluely for the best. If your friend gave you a crazy "it's her or me" ultimatum like that then I am betting you'll probably be better off without that friend in your life, too.
07-15-2014, 10:27 AM   #79
Orchid
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I know you're right in the long run, but for now it just hurts. At least I have R, she's the most beautiful, tough, smart, and sweet woman I ever met and seeing her smile at me every morning with the purest love I've ever seen is worth it.
07-15-2014, 01:07 PM   #80
jwfoise
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Maybe this person will come around at some point, and realize that losing you as a friend hurts far more than whatever they were upset about.
What Patch said. If not, you did the best you could with a bad situation.
07-18-2014, 12:40 PM   #81
Orchid
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Sorry I haven't posted much these past few days. R has prescribed a rigorous regimen of hugging, kissing, and cuddling. It's helping but it still stings, I really miss I. The crying is mostly over and now I just feel that feeling of a thousand things you'll never do together again.
07-18-2014, 01:20 PM   #82
Patch
 
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Hang in there as best you can. Not much else I can suggest. =(
07-18-2014, 01:24 PM   #83
Orchid
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On the bright side, the graphic designer is supposed to get back to us today with a rough draft of our wedding invitations. Sometimes it's really shocking to look at her left hand and see that band of anodized titanium and then realize I'M WEARING ONE TOO OH MY GOD I'M MARRYING THE MOST AWESOME GIRL EVER.
07-19-2014, 03:12 PM   #84
Orchid
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Our invitations are amazing so far, they're exactly what we want. The things we do for love, I'm going to let a doctor stick a huge needle in my testicles to see if they can draw out enough genetic material for IVF when we ready to have a child in a decade. The idea of me as a mother is absolutely terrifying at this point.

"Mommy, what's "humane"?"

"More than they deserve"
07-19-2014, 07:50 PM   #85
Patch
 
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I think I've come to terms with the idea of never having biological children... I wouldn't want to pass on genetic vulnerabilities to all the crap I've had to deal with.
07-19-2014, 08:16 PM   #86
Orchid
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I was of the same mind. I have genes for Crohn's, depresssion, schizophrenia, and worst of all, I'm a carrier of Δ0508. That's the genetic error that R has a pair of that causes her CF. Any child we have as a result has a 50% chance of having Cystic Fibrosis. On the bright side Lumacaftor should be on the market in a decade so it'll simply be annoying to our child if they get it - they'd have to take it everyday for their whole life but that's it.

But R is a clever woman and she's been working me down.
07-20-2014, 09:01 AM   #87
Kero
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How exciting that you guys are talking children! Being a mom is scary, but so rewarding at the same time. The smiles, the tears, all of it is amazing
07-20-2014, 12:57 PM   #88
Orchid
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Well in a decade, but still.
07-20-2014, 04:10 PM   #89
dave13
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Hi Orchid

My coworker has been quite amused with her partner.He is having hair grow on his back-f/m trans-and keeps asking her to look because he feels there are spiders crawling on him.I admit I smile a bit picturing him trying to look over his shoulder to see if he has cooties.

I hope your expedition brings you happiness
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"It does not do to dwell on dreams and forget to live."
07-21-2014, 08:32 AM   #90
nogutsnoglory
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That is funny dave I sometimes feel like that too and I'm a Cisgender guy but my fibromyalgia makes me sensitive to weird sensations. Yesterday I thought a cat touched me and it freaked me out but it's just those nerves over active.
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