Sunday, April 8, 2012

The Final Countdown to Gender Confirmation Surgery

We are in the home stretch before DJ's gender confirmation surgery.

She's had her pre-operative physical performed, lab work taken, therapists and doctors will be penning their letters of endorsement, hopefully, within the next couple of weeks, she is nearly at the point where she discontinues her contra-hormone therapy (and will apparently experience a "menopause"-will the fun never cease?), she has completed all electrolysis/laser hair removal requirements so that scar tissue will be concealed, has been measured for her new breasts (I joked that it will be a family tradition that the women in this family get their boobs "done."), and will inform her dietician of her post-surgery nutritional requirements since she will only be allowed fluids for two-three days prior to and following surgery.  We still need to shop for a few items the surgeon recommended for her comfort post surgery but for the most part, at this point, it's a waiting game.

DJ's most recent visit with the team at her surgeon's office was informative and comprehensive in laying out what we can expect for her recuperation.  DJ will be having a tracheal shave, breast augmentation, and neovaginoplasty all of which will be done on the same day. Each procedure has its own healing requirements.

For instance, DJ will be FORBIDDEN from speaking for two entire days following her surgery.  Even whispering is a no-no since it is even harder on the vocal chords than regular speaking.  While the tracheal shave does not involve the vocal chords directly, the means of locating the exact location indirectly involves the vocal chords, so that is why they are not to be used for two days, I'm assuming to avoid damage as a result of possible swelling in the area.

While DJ is to be absolutely silent for two days, she also will be completely bed-ridden for the same amount of time.  This is a requirement for the neovaginoplasty.  Let's face it-an entire new orifice is being created.  It will, for the rest of her life, be in constant defiance of gravity.  Certainly, giving that new interior vagina a chance to "stick" for two days is not too much to ask.  During this time, DJ will experience the thrills of having a urinary catheter.  Again-a new means of urinating is being created. Perhaps saying a new urinary tract would be more apt.  They are taking the urethra, the tube through which urine passes to exit the body, and redirecting it.  Tissue that has been "messed with" tends to want to close up, so putting a catheter in place to keep it open and to allow waste products to leave the body is a requirement for a week following the surgery.  This is a good thing because remember, she will be bed ridden-how else will she relieve herself?

Speaking of relieving herself-her urinary relief will be addressed, but what about the other means of relief?  For the first couple of days, she won't likely have that necessity present itself because three days prior to the surgery, she begins a liquid diet.  The day before the surgery, she will drink something akin to milk of magnesia which will cause her to eliminate all the contents of her bowels in the day before the surgery. This is HUGELY important.  Considerable organ manipulation will be taking place during the surgery.  Keeping the area as free of contaminants as possible makes perfect sense.  Immediately following surgery, she will begin taking stool softeners so that when her colon does begin working in earnest again that she will not have to "strain" in any way to perform that necessary function and hopefully that area will be spared any unnecessary pressure, if you know what I mean.

It's a damn good thing that the surgeon and the eating disorders folks insisted on the healthy weight that DJ has been maintaining successfully (high five to DJ) for the past couple of months because she will likely lose a few pounds being on a liquid diet for 5 days.

The procedure that is likely to cause her the most discomfort, according to the surgeon's team, is the breast augmentation.  The breast prosthesis will be placed under the muscle in the chest wall for better protection against rupture.  DJ was initially reticent about the breast augmentation: she wanted to have it done but was frightened about the possible side effects as a result of the prostheses rupturing. The physician's assistant that helps her surgeon run the practice had DJ handle a prosthetic device, which put DJ's mind at ease when she saw how "resilient" these things are.   The next biggest issue is the prevention of scar tissue building up around the prostheses. This requires somewhat vigorous massage in the area which can be unpleasant, to put it mildly. But that can be done following her pain meds.

DJ will likely look like she's been in a car accident from the neck down, at least for the first couple of weeks, because she can expect considerable bruising from all three procedures.  That is not a big deal.  What we worry about is post-operative pain.  She will be "snowed" with medications for the first two days.  Before anyone gets all worried about addiction, etc., most of us in the medical profession know that treating pain aggressively AIDS in the healing process and does not lead to addiction.  Addicts can become addicts when they treat their slight pain by using a howitzer (prescribed narcotics) to manage their pain when it's time to step down to a 22 caliber pistol (over the counter tylenol) to manage their pain.  Bulldog and I are both paramedics who have a core belief system in managing pain because of its inherent advantages in being both a healing aid and MERCIFUL, so we will be watching her like a hawk and nagging the nurses, if necessary.  However, the folks at this hospital are very skilled at managing this specific group of patients.  They are used to it.  They likely will not need two overbearing parents breathing down their necks.

As a family, we've been preparing for this, mentally, emotionally and financially for nearly two years. Bulldog immediately began saving within months of DJ coming out to us, to his credit.  And DJ has been preparing for this, physically, for two years, as well.  Likely, she's been hoping for this for many years beyond that.  We'll keep you informed.  Keep DJ in your prayers, or hopeful thoughts, please.

LGBT info by state

Interested in seeing how your state fares with LGBT issues?  Flying Pig strikes again by providing us with excellent information because she is one TUNED IN Flying Pig.  Please check it out-


http://lgbtmap.org/equality-maps

Sunday, April 1, 2012

What a week we're having!

Romeo turned 21 this past week, but it was not a joyful celebration.  The day I mailed his birthday packages to him, three days before his birthday, I was driving the 100 miles to go pick him up following a crisis that necessitated bringing him home from school.

DJ sailed right through it.

She had been having an "off" day herself.  She was rather down that day and was experiencing some frustration.  About what, I can't even remember because her "off" day was dwarfed by Romeo's crisis.  The poor girl was literally on the doctor's table having her pre-op physical performed, having blood drawn while I was talking Romeo through his crisis.  He had lost his temper, broken a glass and was bleeding.  All the while, I'm trying to determine, by phone, how bad he was, physically, so that I could hang up and call 911.  Then I couldn't get Bulldog on the phone because he works at remote locations oftentimes.

Simultaneously, I'm trying to not focus on the possibility that the nurse was thinking that our family was  a bunch of crackpots so that I could stay centered on getting Romeo focused on packing so he could come home, and on finding out if Goodwrench could go pick his brother up until I could get there to get him myself.

I am driving the piece of crap car to DJ's appointment just to keep it running, but am debating whether or not to take it on the 200 mile trip because DJ is insistent that she wants to accompany me to get her brother and there is no room to carry three occupants plus Romeo's belongings in my usual vehicle-the standard shift pick-up truck.  This, too, is stressing me out as I make my way back home, which is in the opposite direction of where I need to go to get Romeo because I have to bring the dog in and make DJ a meal she can eat on the road since eating out is problematic for her AND because we must keep her on her eating schedule.

I am cursing the entire way there in frustration with Romeo and the fact that I can't reach Bulldog to enlist his help.  We grab food, bring the dog in, and take the piece of crap car and head out the door.  This too is stressful because I'm uncertain if the car will make it, but then I figure that while my resources are slim at the moment, I do have room on my credit card.  I can always rent a car if the one I'm driving breaks down.  BUT, I have to teach a course the next morning that is roughly halfway between home and where Romeo is-I grab my supplies.  If I can find a substitute at this late hour, at least he will have the appropriate supplies that I can drop off at the office, after hours, on my way home.

THIS SUCKS!!!  Still no Bulldog.

In the meantime, I've got Juliet on the phone who is very upset and rightfully so because Romeo lost it during an argument with her.  Shame on him-and he knows it, thank goodness; we're bringing him home to get the appropriate help.  At that moment in the conversation, she says one of the saddest things I've ever heard before which is only second to the sound of a preterm baby I heard in the hospital who had just fallen asleep after being assaulted with medical procedures all morning, just to be woken again for another procedure.  It was the epitome of pathetic and pitiful and broke my heart-obviously I've never forgotten it because it happened 21 years ago.  Nonetheless, when Juliet said in her heartbroken way, "I don't think we can be together anymore," I felt my heart breaking and I managed to hold it together just long enough to hang up before she heard me sob.  It wasn't what she said so much as how she said it as if her heart were breaking just thinking of the reality of what she was saying.

Not many times in my life have I sobbed in this manner.  I fight crying vehemently nearly all the time, which is a blog topic for another day.  But you know when you have that deep hurt that causes the noisy sobbing that is impossible to stifle?  That is what happened to me on the side of a four lane highway.  The sound in Juliet's voice literally broke me.

DJ just laid her hand on my arm as I sobbed.  I felt terrible that she saw me this stressed, followed by this upset.  She didn't need this.  Well, apparently it was just what the doctor ordered because it shifted her mood.  She was so focused on making sure I was ok, that whatever was making her feel crummy must not have seemed that bad compared to her mother sobbing uncontrollably at the side of a busy highway during rush hour traffic.  In fact, once we got on the road again, she was upbeat, likely in an attempt to support me.

When we got to the city to pick Romeo up, DJ practically sparkled at being in the company of her oldest brother, Goodwrench.  And this past week both she and Romeo have returned to being, as Bulldog puts it, "two peas in a pod" and he couldn't be more apt.  So what have we learned from this, boys and girls:

1.  Just when it feels like you're at the bottom, look around.  Someone may be feeling worse than you which serves as a great reminder that maybe your life ain't as bad as it seems.

2.  Perhaps the best thing for a person who is absorbed with how crummy she feels is helping someone else who feels crummy.  It takes the attention off of oneself and helping others almost always acts as a way to help ourselves.

3.  Sometimes the S  - - -  hits the fan and everyone involved does not see how any good can possibly come of it;  then you notice how other opportunities present themselves and the key is to take advantage of them.  Marvel comic book movies and episodes of "Friends" can be a great bonding experience for two siblings who haven't had the chance to connect much in the last two years.  Taking a trip into town looking to satisfy geeky hobbies is always a good time too.  Young adults can find out how supportive their parents really are and parents can find out how supportive their young adult children can be, in spite of their recent crises, as well.

4.  Learning that it's ok to take a step back and that the world won't end is a huge learning experience.  Romeo has been full steam ahead in an effort to keep his anxiety about his future at bay.  Perhaps learning that full steam ahead is not a good methodology for him will make his entire future more secure.

5.  Crisis serves to winnow out the good-time friends from the real-deal friends.  The former are great at parties and suck at crisis.  The latter are great at both.  The only way you can tell which is which is to survive crisis together.  Romeo is finding out that having a few real-deal friends is way better than having a dozen good-time friends.  He didn't know the value of it before when he lamented he didn't have " a lot" of friends; I think he understands the important difference now.

6. When you take responsibility for your actions, are truly sorry for the  hurt you've inflicted, and make concrete plans to make sure those actions don't happen again, most people will give you another chance because true love usually offers true forgiveness, as long as it's a two way street.

7.  When you wake up in the morning breathing and you have a pulse, life has just offered you a"do-over."  Most of us wish for do-overs when we make mistakes but fail to recognize one when we see it.  When you make it through the dark of the night and the shadows of your fears that seem to amplify at night, you've made it to another chance to make things right and to start over.  Life is giving you a second chance at living.

Sunday, March 25, 2012

Finding her voice

We hear this phrase a lot-

"I didn't have a voice."

Often it refers to a law being passed without a person having the right or ability to weigh in on the decision.  Sometimes, a person may mean it literally-like my father, God rest him, after his laryngectomy.    And of course, he didn't say that, nor did he write it, but he acted it out daily in those first weeks post surgery, nearly until the day he died nine months later.

Interestingly, two minutes ago, as I started to write this entry, I planned on going in a different direction with it, but being reminded of my father's frustration at literally losing his voice seems a more apt place to start.  Once again, I will take the liberty of imagining what it must have felt like to be a person I've never been, that is, one who had literally lost his voice.

My father had always been a forceful person in many ways.  He was direct and intelligent and we all agree that his gift was words-both written and spoken.  He was first generation Irish American and therefore was fluent in sarcasm;  he has since passed on his bilingual abilities to all three daughters, and so far, to both grandsons.  Flying Pig's children are too young too have absorbed that fine language, but I look forward to the day when I can hear the sarcasm drip off of their little tongues!!

When my father had his vocal chords surgically removed in an effort to save his life from the cancer that ate away at his larynx, I can only imagine into what world he had been plunged.  He had literally lost a barrier to germs and anything that didn't belong inside his body as he now bore the mark of his surgery in the form of a gaping hole at the base of his neck.  Anything could get inside him that could fit in that hole, and no words could come out.  Like the only cat I've ever had declawed, he was stripped of one of his major abilities to defend himself and exist, and it left him fearful.  His fear, just like my cat's, manifested itself as extreme cantankerousness and some timidness as well, which make for very strange bedfellows.

I leap from the literal loss of voice to the figurative next.  DJ, the previously fearless trailblazer,  has spoken of losing her voice, or feeling like she just didn't have one.  Well, it seems only natural that when one is invisible during the majority of her waking hours one would be likewise voiceless.  And that is how she felt this past fall when she began to struggle in earnest.

I try to imagine how small one must feel if they are not seen, nor heard.  Experiencing either of those would be frustrating, to say the least, and likely enraging.  Think of it:  You are to meet a friend in a crowded park or on the beach.  You tell your friend where you will be and you watch for her arrival. You see her when she arrives, but in spite of you telling her exactly where you'll be standing, she does not see you. What do any one of us do when we are trying to catch someone's attention?  We begin to wave our arms madly until the visual disturbance catches that someone's eye.  And why do we wave madly?  Likely for two reasons:  we really want to be seen and we are frustrated that we somehow aren't visible.  We are attempting to control our world.  If you can't see me, fine, I'll make sure you can see me by gesturing wildly.

In this day and age of cell phones, we are infuriated with dropped calls.  We will be in the middle of telling someone something that is important to us, only to realize after who-knows-how-long that we have been talking to no one except ourselves and the perfect strangers within hearing distance, because our cell phone call has been inadvertently disconnected.  Being heard is SO important to us, the ability to communicate is SO crucial to us, that mobile phone carriers will tout their low percentage of dropped calls as a means of enticing us to take our business to them.

If I lose my ability to see, or to taste, or even to hear, I don't stop BEING; but it can certainly seem as if I've stopped existing if I cannot be heard or seen.  So, DJ felt as if she was invisible, AND lost her voice too.  How frightening would that be?  I've experienced one, or the other, but not usually both at the same time for any significant length of time.  Now, part of this was her decision to NOT talk to people who wanted to listen and we will continue to work on that, but much of it was not a decision she made, but was more like she was surgically excised from the hallways at school, or from the classrooms.

She's getting her voice back now and sometimes it's hard to hear what she has to say.  She is, after all, a teenager!!  We've been encouraging her for months, nay, years, to speak her mind and she is taking it to heart.  She can get snippy and for the first 500 milliseconds, I feel stung by her words, but then I realize, "Oh yeah, this is what teenagers do when they actually feel like they have a voice - they sometimes mildly abuse the privilege!"  And not only is it ok, I actually kind of want to cheer for her!!

Last week she saw Dr. Carla Enriquez in New Jersey.  This woman is an awesome doctor.  She is a neurodevelopmental specialist for kids and has great experience treating ADD, ADHD, OCD, depression, bi-polar disorder, as well as gender dysphoria, and probably much more beyond that.  She had counseled DJ on the importance of realizing that she had to look out for herself and sometimes it was important to say, "I just don't give a shit" when people were out of line.  And that is a direct quote. So, when she disagreed with DJ's decision to be on progesterone, citing that her hopes of future breastfeeding were next to zero and therefore not worth the risk of side effects, DJ responded kindly, but assertively, "Well, it's important to me to try and if it turns out you're right, I'll just have to say, 'I don't give a shit.'"

Dr. Enriquez roared with laughter and approval.  So did I.  Our girl's got her voice back.  It must feel glorious to her.  We can give her some wiggle room.


Wednesday, March 21, 2012

Flying Pig strikes again

We LOVE Flying Pig, once again.  Well, we always love her, but we feel a particular spike in our affection for her since she is one who likes to share knowledge and she has shared two VERY important links that I have added to our resources.  Please check them out. 

It seems Cyndi Lauper has been blazing a trail for GLBTQ youth.  And in true Lauper fashion, one of her causes is called "True Colors" (PERFECT!!!) and the other "Give a Damn" (Equally Perfect!!!).  Both support GLBTQ youth but the first specifically provides resources and housing for young folks whose families have deserted them.  The second  is addressing the political aspect of inequality for GLBTQ people in general.  Please check out the links.  There are supportive messages for those of you who may need it.  You take one look at "Give a damn" and you'll know there are BIG name folks and regular folks who are batting for you and we're swinging hard.

Flying Pig, as always, you are the best!!!

And also, thanks to Anonymous, for sharing a link for those Transgender folks who want an accurate passport.  I added that to the link, as well.  Check it out.

XOXO
The Author

Monday, March 19, 2012

Oh lordy, she's driving!!

Yes, it's official.  Drivers in Virginia-be sure to fasten your seatbelts because DJ earned her driver's permit today.  It is glorious seeing her succeed in another area of getting her life back on track. It is not so glorious rubbing Ben Gay on my neck after she stalled the standard shift pick-up truck about ten times trying to master getting it into the elusive first gear, however.  Actually, I don't mind at all.  She did a great job for her first time ever behind the wheel, not counting the tractor, of course.

High five for DJ!!!

For another reason:  her driver's permit/license reads with her legal name and her gender is identified appropriately as F- yes, that's right. FEMALE.  And in the incredibly conservative state of Virginia, no less.  I never would have though it possible but Virginia has made it possible for pre-operative, or post-operative transgender folks to have their gender correctly identified on one's Driver's license.  My wording might be a bit confusing:  one does NOT have to be in the process of attempting surgery, only that it allows folks who are trangender without having surgery to obtain the license correctly AND it also allows folks to change their license if they obtained it bearing the genetic gender, had surgery, and want to change it post-surgery to accurately reflect their insides, and outsides.

Those of you who live in Virginia-this is how you do it.  Go to your DMV and ask for a Customer Medical Report form.  It's possible you can get one by going online to www.dmvNow.com.  Follow the instructions and complete the form.  The drawback is you will need a healthcare professional to confirm that you are being treated for Gender Dysphoria.  You then submit that form to the DMV in Richmond.  We also submitted letters from the therapist and DJ's surgeon stating she was under their care.  I will scan a copy of the letter DJ's surgeon wrote.  Feel free to use the wording.  Disc Jockey came up with it and we copied and pasted it and sent it to DJ's surgeon where she could put it on her letterhead, sign it and mail it to us.

The Medical Review Services committee is supposed to make their decision in two weeks and should send you a letter granting you permission to have the gender with which you identify noted on your license.  You take that letter to the DMV, along with other documentation to include any legal name change paperwork, your birth certificate, even if it's in your previous name, as long as you can show provide the paperwork that it was legally changed, your social security number, and if you're a minor, your parent's driver's license, along with their signature.  Hopefully, you will have your parents' support, or even just one parent's support, in this.  If you have trouble, the phone number for the Virginia Medical Review Services desk is (804) 367-6203.

If you don't live in Virginia, consider looking up the medical guidelines for the department of motor vehicles in your state. 

Remember, however, in most states, as I understand it, your birth certificate gender will remain as the gender identified at birth based on your physical presentation at that time, until gender confirmation surgery in most states.  But, once you get a legal name change through your local court system, then it's a matter of filling out an application and sending a check for about $25 to have your name legally changed on your birth certificate too.  Yes, passports are issued based on birth certificate information, but if you have not had gender confirmation surgery, but do have a driver's license with the appropriate gender identified on it, then when you apply for your passport, have your picture taken as you normally live and present.  While the passport may not reflect the correct gender, the picture will, your driver's license will and hopefully you can avoid disaster at the airport.  But just to be safe, carry a copy of the letter from your therapist or healthcare provider, a copy of which I will provide below, that you can present to any official who is questioning the fact that the gender on your passport does not agree with your presentation and/or your driver's license.  You want to stack the deck in your favor to make traveling by air as stress free as possible.

Whoda thunk The Commonwealth of Virginia would provide a way for non-mainstream folk ?  Not this author.  Virginia, I applaud you on this one. 

Please find below, at the very bottom of the screen, on a brown backdrop, a scan of a "carry letter" that Disc Jockey recommended for DJ to make use of when necessary. Do not include what is in parenthesis in your letter.  I don't think I should have to mention that, but you never know what people are thinking if they're anxious for success. I recommend you have your therapist or healthcare provider print it on  his/her letterhead, and have at least a couple of copies bearing his/her original signature and a number of photocopies.  Keep one on your person if you feel like you may ever need it.





Can't say it enough-educate yourself.

DJ is home.  I say that happily and with tiredness in my cyber voice.  Bulldog and I are so glad to have her home, and she is glad to be home.  When she was discharged from the Reflections unit (the eating disorders unit) her therapist ended our last session by saying:

DJ, what I'm about to tell you is not a canned speech.  A lot of girls come here and leave because they don't want to be here; others leave because their insurance won't pay.  Some girls leave because they need to be in a long term residential care facility to manage their eating disorders.  You are leaving because it's the right time for you to go and that doesn't happen very often.  We are all so proud of you and you did so well.

And yes, she did.  She is religious about following the program in spite of putting on the required weight, which is mentally and emotionally tough for her.  But she is one tough cookie and is motivated by her upcoming gender confirmation surgery.

However, there was, is, one significant drawback of DJ's hospital experience.  In spite of their treating her appropriately in the emotional sense on being informed that DJ is transgender, I have to say, in my opinion, that they fell a bit short on the psycho/social/medical aspect.  They admittedly had never treated a transgender patient in their facility, and took it in stride.  They kept her on the girls' floor, and did not divulge DJ's history and supported her when she chose to share her history with the other girls, who, by the way,  were champs.  Not to steal their thunder in any way, but of course they were champs-DJ is so obviously a girl and they had no preconceived notions.  But I still am grateful for people who can take my daughter's word for who she is without needing to inspect her original birth certificate or her underwear.

But back to the facility-when DJ experienced certain symptoms of stress, which is normal in the transgender person, they instead, wanted to label her.  And they did, which we will have to fight to get off of her medical records.  They viewed DJ as a person with anorexia and anxiety disorders, who also happened to have gender dysphoria.  But DJ is a person with gender dysphoria who is experiencing anxiety, and anorexia, as a result of her gender dysphoria.  And there is a difference.

I'm not doctor, but I'm a very experienced paramedic.   When someone's heart is racing, we must determine why before we wantonly apply electricity and shock our patients.  (The word is actually "cardiovert" for people who have pulses; I want to be accurate for any of you who have medical backgrounds.)  For example, a rapid heart rate is a normal finding in patients who are running a fever, are anxious due to fear, or shock, and is common in people who have experienced blood loss, or are having a seizure...the list is pretty extensive.  So, when DJ manifests certain symptoms that can be indicative of 10 different issues, it seems reckless to me to apply the worst case scenario diagnosis based solely on the one symptom.  It's like saying a person has a heart condition because their heart is beating rapidly after getting pulled over by a cop for speeding.

For those of you who were born in the wrong body, who are experiencing gender dysphoria, and for those of us who love our gender dysphoric relatives, please educate yourselves on what is considered "normal" in the gender dysphoric patient.  It's common for people with Gender Identity Disorder, another name for Gender Dysphoria, (although I prefer the latter since it literally means "unhappy with (genetic) gender") to experience any of the following:  anxiety, depression, OCD, tics, suicidal ideation, low self esteem, and in DJ's case, eating disorders, which are not terribly uncommon either, in the gender dysphoric patient population.  These are called co-morbidities in the medical world.  No one is surprised that a child with an upper respiratory infection also has an ear infection-they often go hand in hand.  However, an ear infection without a typical underlying cause would be more concerning.  The same can be true of the common co-morbities that can accompany gender dysphoria.

The reality is, as far as this person can possibly understand it having been born in a body that matches my identity, that gender dysphoria is probably one of the biggest psychological, social and physical challenges a person can experience.  And yet, people experience it every day and are NORMAL in spite of having co-morbidities.  They adjust, they adapt, somehow and some way, and overcome the challenge of having a "birth defect" for which no mainstream organization sponsors walks or telethons to raise money for treatment.  It's one of a handful of medical conditions that many health insurance companies will not cover and so the folks who thrive, in spite of their medical condition, must also bear the brunt of expensive medical costs to manage their conditions.

So, do not let medical people saddle you with an inaccurate diagnosis.  Do not let someone wantonly label you.  To quote a doctor I know, "Doctors like to pathologize".  And more importantly, do not label yourself.  Yes, you may need support, and therapy, possibly anti-depressents, or other medications to manage your comorbidities;  continue to get whatever care you need, but it does not necessarily follow that you are abnormal, or sick.  Try to find doctors and therapists who are experienced with transgender patients.  They will likely not be surprised at the other symptoms you are experiencing because of the stress and fallout of being born into the wrong body in a hostile world.  Again, check out the links to the right of the screen.  Laura's Playground has a listing of doctors and therapists by state.  PFLAG has support groups.  Go to the people who understand your condition and aren't in a hurry to slap a label on you.  My guess is you've probably experienced enough struggle and discrimination and certainly don't need the trouble that comes with a label.