Author Topic: calling all Vets for action!  (Read 9699 times)

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Offline Cynobyte

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calling all Vets for action!
« on: September 29, 2015, 02:23:33 am »
Been a long night, but i got to get this out!  please fix and move if needed so all can see..  I found a possible solution that has not been addressed here to the VA tg issue for those not getting the care they need:)  Please bare with me on this one, feel free to pm me with questions..  will post news as i get it on the progress at the VA..

So today after going all the legal routes and for the most part got my transition help on the outside of the VA.   I still recommend that it is easier to use medicare to transition than the VA.  I wrote the following of what has transpired the last 2 weeks to come to this..  I am asking Vets who want to make a difference for us <not allowed> in the system to please check your local va and see if they have implemented va-2013-003..  If not I will have a solution on how to check and fix the solution :)  Together we can make a change in the system! (I hope?  I’m so loaded with morphine from the pain tonightSad smile)

This part is to explain how I got to what I did today:

Last week I saw my primary care and psychiatrist to help me but neither had no idea how to help me with my transgender needs.  they have not heard they can do anything for it and fear trouble if they do help!

Just this month, i started having issues getting cheap hormones rt now, I decided it's time to push them through the VA..  Both of my drs literally did not know what todo and we're afraid to go any further trying to get me hormones,  and asked that I contact patient advocate..  My psychiatrist was under the impression that you can only get hormones if your transition was service connected?  Wow, she's a nice lady but that shows the current issues with the VA training down here..

Last week, the issue with stroheckers pharmacy loosing their liscense,  my estradiol meds have gone from 60 to 300 bucks overnight..  Or so I thought when I found no pharmacy in town carry estradiol injection type..  So now is the time for me to push for pellets or goto the VA for help:) If anyone knows a cheap compounding pharmacy that has their license currently, please post!

Today, I finally was down at the el paso VA to talk with patient advocate.  The lady who's name eludes me tonight,  was glad to help me but had no idea of the va directive 2013-003.  If you do not know about it, or have not read it, please see the following link:
http://www.va.gov/vhapublications/ViewPublication.asp?pub_ID=2863

I explained to her that no matter how much my dr was trying to help me, it was her superiors who are not doing their job implementing this directive to create a safe working environment for the drs to treat the patients and make sure the patients get the level of care they deserve..  She was shocked to find this was not happening now, but most things in the VA are behind  :(

Below is what the VA by law has to already provide to you!  If you feel you are not getting this service, please keep reading below to find a safe solution I came across to help implement it:)

va directive 2013-003 basically ensures that:
4. ACTION :
a. Veterans Integrated Service Network (VISN) Director. Each VISN Director must ensure that necessary and appropriate health care is provided to all enrolled or otherwise eligible Veterans based on the Veteran’s self-identified gender, regardless of sex or sex reassignment status.

b. Medical Facility Director, Chief of Staff, and Associate Director for Patient Care Services or Nurse Executive. The medical facility Director, Chief of Staff, and Associate Director for Patient Care Services or Nurse Executive are responsible for ensuring: (1) Transgender patients and intersex individuals are provided all care included in VA’s medical benefits package including but not limited to: hormonal therapy, mental health care, preoperative evaluation, and medically necessary post-operative and long-term care following sex reassignment surgery to the extent that the appropriate health care professional determines that the care is needed to promote, preserve or restore the health of the individual and is in accord with generally-accepted standards of medical practice.


Solution:
This is what I did today to get the ball rolling!  Hopefully you can use some of the same stuff to further our progress!  I did this to help everyone in the El Paso district..  The patient advocate was shocked to know there are others and some not transitioning because of the local VA's inaction!  I am doing this to, besides help me, to help others in their transition too.  I’m tired of being the only one walking the halls there:)  People at this VA and the las cruces branch are very respectful, I hope at your va too!

getting back to the solution:
1. goto the patient advocate and find someone who you are comfortable talking to
2. bring a copy of the va directive 2013-003 with you, ask the advocate if they know of this directive and has it been implemented?
3.  if they say it has been implemented, ask them for a point of contact to call if denied care..
4.  Ask to make sure the directive gets implemented and get a response back after it does.  once this is implemented, all vets will (hopefully) receive transgender health care in your area!

if you are worried to ask your local va due to repercussions, feel free to pm me, but please find your va’s local patient advocate phone number and I will gladly call and verify this program for you and tell you how to get into it..

ok, I hope this all makes sense..  I was in pain today when I got home and slept..  I just need to get this info out asap so we can get the ball moving..  My advocate even had the impression that “why go through the va, because we would have to pay for the service and meds anyway?”  I explained to her that I’m 100% service connected.  Any disabled vet are entitled these services for free!  (Another piece of info to go loaded with)  To be honest, my transition may be the one reason i'm around still!  I want to see how this all turns out:)  feeling good about my dysphoria does more help than any pain meds and mood pills any day!  Yea, I still hurt bad and feel like i came out a meat grinder, but I don't have that "give in" attitude anymore!   I hope this may help a vet on the edge too!

please let me know if I need to change any of this info, but I think I got it right!

Offline blue_firefly

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Re: calling all Vets for action!
« Reply #1 on: September 29, 2015, 05:27:11 pm »
I too went through the VA although it was much less difficult getting care... I didn't even have to bring up the directive I just talked to my primary, They transfered me to my endo, and I've been on for nine months... with the blessing of a phyc of course... JD

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Offline Cynobyte

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Re: calling all Vets for action!
« Reply #2 on: September 29, 2015, 06:25:31 pm »
Hi blue_firefly, may I ask where you are located?  Some VA'S are going to have this directive implimented already..  I found the elpaso one wasnt..  I'm sure there are more out there.  These are the ones we need put online with this directive. .  As long as they know about it and drs are willing to work with you, but when the drs seem scared and lost on what todo, that what we have to fix..  I have a fellow vet who is transgender but will not transition because she works at this va, and scared she would loose her job..  now that's sad, but it's also texas! 


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Offline blue_firefly

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Re: calling all Vets for action!
« Reply #3 on: September 29, 2015, 08:18:38 pm »
I live in iowa and due to Dr patient confidentiality I am currently transitioning and am also employed through central iowa VA helthcare and as far as I know noone at my job knows. I will keep it that way as long as I can because it doesn't matter in the kitchen... we all wear the same uniform and the same hair nets and no one is allowed to wear makeup or polish or things of that sort.

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Offline Cynobyte

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Re: calling all Vets for action!
« Reply #4 on: September 29, 2015, 08:41:44 pm »
:)  thank you..  hopefully everyone around your area has no issues too:)  now if all the va's will model after your va:)

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Offline Jessica Merriman

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Re: calling all Vets for action!
« Reply #5 on: September 29, 2015, 11:30:21 pm »
Just an example. If I did not have Medicare Depo Estradiol (Cypionate) for 90 day supply $89.00. With Medicare $2.55. Shawnee Oklahoma.

Offline Cynobyte

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Re: calling all Vets for action!
« Reply #6 on: September 30, 2015, 01:03:50 am »
May I ask where you get your estradiol, and is it in stock?  Even a local Wal mart, I can find a way to get my prescription to them, but everywhere I call is out of stock around here:(   Thank you for the heads up:)  although I will be eventually going through the va, I'm not holding my breath anytime soon!

Offline Joi

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Re: calling all Vets for action!
« Reply #7 on: September 30, 2015, 05:29:26 pm »
Hi Cynobyte:

I have been receiving MH counseling from the Hou VA for nearly a yr.  Once I indicated that I was Trans. and wanted to initiate transition, they started the process leading to an Endo + hormones + RX medication to reduce facial hair, + Lidocaine ointment to ease the pain of electrolysis +referral to an outside provider for "Voice therapy" training + guidance on changing my gender and name in the VA system (done)  I participated in an 8 week group therapy program for Trans vets. in the Spring and just started with a new group scheduled for 8 weeks on Monday.  Although it may seem that Houston has it all together and they've done a lot, I did run into a roadblock when it came to securing a letter from my prime care phys. clearing me medically for GRS.  I'm having my surgery done in Bangkok and they wouldn't provide the letter I needed saying that I was healthy enough to undergo the surgery.  Said if I was having the surgery done in the USA would not be a problem.  Had to go to a "private" phys. to get it.  (done).  They are however providing me with all of the tests, x-rays, EKG's etc. that I will need prior to surgery.  MH was great providing me with the letter that I needed for my surgeon in Bangkok. All in all, would rate them 8 out of 10.  Hope this info helps.
Hugz,
Joi   



Offline Cynobyte

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Re: calling all Vets for action!
« Reply #8 on: September 30, 2015, 10:21:04 pm »
I'm jealous:)  I need to check, but I thought Texas was all one district?  If it is, I may need to call a little higher up if things don't go right to push this through:)

I thank you for that info..  I don't know what to say about the foreign medical clearance, most surgeries you don't recommend out of the country, and maybe that's what they were going by?  I'll look more into this this week and get back with you..  just had a liver biopsy, I would have rather broke my rib again!  Wow, it still stings:(  laters, j

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Offline audreelyn

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Re: calling all Vets for action!
« Reply #9 on: September 30, 2015, 11:27:54 pm »
Living in Los Angeles, I was surprised that there were so many hurdles in trying to get treatment for Gender Dysphoria at the VA. Ultimately, I couldn't navigate the labyrinth of obstacles to make it happen. I went through my civilian job's Kaiser HMO plan, and it worked out wonderfully.

However, just the same, if I only knew where to start, and if the care personnel knew how to direct service members and vets... we could help others. Sadly, I haven't the slightest idea either, but I am willing to help!

Needless to say, as I tried googling some solutions, I found this interesting article:

http://www.latimes.com/nation/la-na-transgender-military-20150904-story.html

Offline KittyKat

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Re: calling all Vets for action!
« Reply #10 on: October 01, 2015, 12:07:22 am »
I just had most of my healthcare taken over by the Oklahoma City VA, including my HRT. My primary care doctor actually never had a transgender patient before, but he was very kind and thought I was CIS at first. On my first visit he filled my prescriptions to last until the endocrinologist consult he had put in. The doctor at the endo clinic was more knowledgeable. I've only seen her once and will be following up next month. My name hasn't been fully changed in the VA hospital system I was told it can take up to 2 months, but when I show anyone my ID to check in for appointments they make corrections on their paperwork.

Offline Joi

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Re: calling all Vets for action!
« Reply #11 on: October 01, 2015, 12:11:29 am »
Cynobyte:  I wasn't asking them for a clearance, just a letter stating that I had no underlying medical conditions that would preclude my ability to undergo the surgery.  After repeated requests, my prime care Dr., moved it up the chain to the Admin. folks at the Houston VA.  Their response was to have the Dr.'s in Thailand that were going to perform the surgery make that call.  What a joke! As they were the one's asking me to obtain the information in the first place.  That's when I gave up and went outside.

My LGBT therapist at the VA felt that it would be done in time with some additional input from other VA system providers.  In fact he cited one of his contacts in San Fran. who said it was commonly done there.

What the system fails to get is that most Vets. don't have additional private insurance and although Medicare has agreed to cover these surgeries, there is not an MD in the US that will accept Medicare.  I tried this route first.  I knew that Medicare was covering GRS effective in 2014, and I have a supplemental policy that will cover what Medicare doesn't.  Catch 22 - the MD's still wouldn't consider Medicare.  They are in for the $$'s  and most of them are not very experienced when compared to the Dr.s in Bangkok.  I'm getting my surgery for 50 to 70% less than it would cost in the USA and from a surgeon who developed the techniques that the US surgeons are using.

Hope u feel better tomorrow!

Hugz,

Joi

   



Offline Joi

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Re: calling all Vets for action!
« Reply #12 on: October 01, 2015, 12:15:58 am »
Kitty Kat:  The policy that they follow for the name change requires a court order verifying the legal name change.  Once I submitted that my name was changed in less that two weeks  Got my new "corrected" ID card soon after.



Offline Cynobyte

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Re: calling all Vets for action!
« Reply #13 on: October 01, 2015, 05:21:27 pm »
Glad you answered the medicare issue..  I have been pulling my hair out looking for one, if even just to pay the hospital stay and other such things?  I can barely travel to vegas when I fell better, but overseas is out..  I can't fly due to heart and lung issues, but got drs wavers todo these surgeries more as a hospice thing?

Just now to find out they pay your lidocaine for electrolosis?   I'd really be steamed if they paid for that too..  although mine is 200 to 300 a month, after a few years that could have paid for a surgery!

Right now since all my drs say a gastric bypass will help my health more than my weight, I cannot get one via them for another 2 years or more, they wanted to put me in the move program, which I went to the starter class to sign up, it starts in jan now, but I see that that has been now canceled to move further:(  I have a profile by my rhumatologist not to do too much because the lupus causes inflammation. .  They recommend a swimspa for me and tried to set me up 3 days a week at a spa place in El paso..  oh yea, drive 200 miles a day to swim?  Why not just buy me one like it says in their guidelines..  water under 85 messes up my muscles and joints, then they have to inject me with corticosteroids which then mess up my bloodsugar for a week..  I just cannot win:( 

I even fall through the cracks for a private nurse..  I do qualify for aid and attendance,  but that has been botched on their ends til I got a rep finally!  I'm so pissed now I'm going for r2!  At least it will pay for the extras I need to survive..  I finally hired a kid who I have taught about medical stuff, he will be moving his family here next week and living next door..  it's not cheap, but he's gonna help sell my stuff off so I can downsize and live a simple life to enjoy:)

3 days have gone by, no word from  patient advocate, they are supposed to give initial response within 24 hrs and more after, I'm going to start calling tomorrow... 

Thank you all for your info and inputs so far..  I will be using it as bullets to fight them if I must..  I will not use any names unless you don't mind if I need to..   

Finally feeling better today after yesterday's hell..  don't get a biopsy if you don't need one, but I'm sure 5 years on fentynol and heavy pain meds I take has lowered my pain tolerance :(  they even put 10mg of morphine in my IV and I never felt a difference :(  I had to wait til they let me on my back and could have liquids, where I grabbed my bag and palmed a couple oxy I keep in stock..  looks like I need to get my pain dr write a letter to keep w me for surgery and other stuff to say why to raise my pain doses and why with my history..  I feel like an addict, but I have no choice:(

I'm still looking for info on more districts and will help if needing to push the directive for anyone..

Ok, chat later:)  j

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Offline Joi

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Re: calling all Vets for action!
« Reply #14 on: October 02, 2015, 09:39:35 am »
Cynobyte:

When & if you request the "numbing" cream from the VA, be sure to ask for "Lidocaine and Prilocaine Cream" 2.5%/2.5%
As far as I know it's the strongest  they dispense.  I had a script for "Lidocaine" but it was only .5% and not effective.



Offline Cynobyte

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Re: calling all Vets for action!
« Reply #15 on: October 02, 2015, 12:58:38 pm »
Cynobyte:

When & if you request the "numbing" cream from the VA, be sure to ask for "Lidocaine and Prilocaine Cream" 2.5%/2.5%
As far as I know it's the strongest  they dispense.  I had a script for "Lidocaine" but it was only .5% and not effective.
Literally,  thanks for replying.  I fell asleep in the hottub.. the alert woke me up, then went back to bed:(  been a bad morning for me..  Sometimes I wake up and literally don't remember going out to the tub..  Fortunately I got a smaller tub a couple years ago so it is hard to get my head under the water when stretched out napping:)

Ok, as for the lidocaine,  thanks for the reply on that..  I've been wanting to try a new type.  I currently get lidocaine w eppy at 2%.  I also have regular 2% lidocaine, but it wears off in a matter of minutes.  The eppy causes the blood vessels to restrict making the lidocaine last up to 40 minutes..  I can get lidocaine,  but it has not been easy to find any other type of injectable anastetic beyond the lidocaine.  I can get topicals in any formula, but they don't scratch the surface for me:(  I found one type on ebay, it's rather cheap, i cannot feel any cutting or needle pokes, but the heat burns bad!  So I just use as numbing agent before my session.  We then pick the areas to work on, and I shoot them up..    thanks for the new stuff to try:)

Will post a finding about the va in a while, nothing great yet, but possibly an lgbt email address for the va:)  j

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Offline KittyKat

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Re: calling all Vets for action!
« Reply #16 on: October 04, 2015, 10:43:21 pm »
Kitty Kat:  The policy that they follow for the name change requires a court order verifying the legal name change.  Once I submitted that my name was changed in less that two weeks  Got my new "corrected" ID card soon after.

I submitted my court order and it still hasn't been updated in the VA system. I recently got my birth certificate corrected so I'm going to go over with that to get my gender updated as well. Hopefully when I bring everything this time it'll go through faster. I'm just waiting to recover from having my gallbladder removed.

Offline Cynobyte

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Re: calling all Vets for action!
« Reply #17 on: October 04, 2015, 11:22:55 pm »
I submitted my court order and it still hasn't been updated in the VA system. I recently got my birth certificate corrected so I'm going to go over with that to get my gender updated as well. Hopefully when I bring everything this time it'll go through faster. I'm just waiting to recover from having my gallbladder removed.
I found an email to an actual lgbt office in the va system that supposedly makes sure the va's are complying.  I sent them an email wed, but nothing as of yet, so I'm going to call a number I found to that office..  sad I lost it, but will find it later tonight and post both email and number so we can start putting a bug in their butt!  It will be a week tomorrow and I better hear from patient advocate too?  It's el paso tx, I sadly found that the lgbt and support groups are kinda hidden since hate groups post on large signs around there..  I am full time transgender and not scared because of my size, but I do watch more carefully around that town!  I have strategies and defensive stuff I carry with me just incase..  no, I don't Cary a gun or knife, I've been diagnosed with ptsd, take heavy pain and neurological meds, plus  packing estrogen, so a gun or knife is not a good idea to carry..  it would land me or most of you in jail before helping us.  I definitely would not survive in jail due to the medical attention I need, so I just play it smart, and try to use the buddy system too!

Kittykat, I hope you get your papers fixed..  I'm not going todo a name change, but I have been thinking of changing my gender so I get better attention..  I been seeing it may be possible todo this just by submitting my medical records to medicare, they will change my gender marker..  we shall see, it's what their site wants todo it..  I just worry about changing my name rt now in case something happens to me in between change..  I've already seen the va at its worst just from a simple error on a report..  it could cost my family their support, insurance, the house, or any other thing a government agency can mess with..  sad:(

Let's see this week if the el paso va starts recognizing the transgender directive.  Only thing I saw them do lgbt was put a poster up on lgbt awareness month..  big deal, actions are better than a pretty poster!  This supposed office I found better stick up for us, or we need to clean them out and take it over!  I'll volunteer if I can do it from home and get some authority in the va on these issues:)  I just bet they tell this office to just look pretty, but they have no pull:(  I will report back in a couple days with as much detail as I can.. hopefully it's good info.. 

Btw, we are going to make a flier that debunks <not allowed>, from hormones to mental issues.  A guide how to deal with haters.  If you have issues you would like addressed, please pm me on it..  I plan to use data from the 2015 tg survey to data from those who write the world health standards of care for us..  I'm sad from people not being able to stand up to lies about us. We don't need to fight, but we have the right to tell the truth to defend ourselves..  i hope to continue to modify it as the lies change over time..  it will not always work, but I hope it helps promote the truth for us..  If it can save the life of just one person, from either suicide or hate inflicted on them, then it will have been worth the effort!

Night all, jamie

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Offline Joi

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Re: calling all Vets for action!
« Reply #18 on: October 05, 2015, 11:46:16 pm »
RE:  Medicare/ Soc . Sec. & name change etc.

I legally changed my name and after submitting the "Court Order" at my local SS office received my new card in less that a month.

Soon after, I signed up for online access to SS using my new name.  This went fine.  That's where you can request a replacement Medicare ID card.  Sent in my request.  A few weeks later, I received a mailing from Medicare addressed to my new name.  When I opened it up it contained a replacement card with my former name on it. Go figure!

Called Medicare and they said that the new name request had to come to them from SS.  DUH!

Planning to have my gender marker changed at SS and understand that this can be done by presenting a document to them stating that I had completed my transition to the female gender.  Have the letter already.

This is the same letter that I submitted to Dept. of State for the changes to my Passport.  Should be receiving that soon.

FYI: In my experience thus far, I find that the LGBT therapists at the VA are recently graduated Ph.D's serving fellowships at the VA (1yr.) Perhaps they are pursuing "Board Memberships" They are then posted to other locations in the VA system. They mean well, but don't seem to have much clout and are closely supervised.  Could be that the LBGT therapists in "El Paso" are being handcuffed by their supervisors who are not fully implementing the TG directives. Wouldn't surprise me a bit as politicized as they at the top. Just a suggestion, but you might want to play their "game"  Contact your US Reps. or Senators and see what kind of response you get. Times awasting!
Hugz,
Joi



Offline Cynobyte

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Re: calling all Vets for action!
« Reply #19 on: October 06, 2015, 01:51:07 am »
Spent the day settling my new medical aid into there place.  Gotta get ready for the winter.  This is going to be an expense in itself, since I've yet to get aid and attendance..  soon as the weather drops a little more, I'm stuck in bed over 90 percent of the time trying to stop the flairups..  yet the va says it's not service connected!   They admit my lupus, polyarteritis nodosa, rhumatoid arthritis, ranaulds, Asia syndrome, and several masses in my body are all service connected, but the fibromyalgia that would get me aid and attendance is not service connected..  and yet fibromyalgia is a broad term used for most of the stuff listed above!  Wow, I love beaurocrats!

I still would love to do the legal name change, but just going after my sex marker..  there is already up to 150k in backpay if I can play their game..  I can imagine if my named change and them saying "james is not here to get the money anymore!"  They are that evil.. 

I still love the va, but just the drs and nurses.  It's the supervisors and ceo's who should only have jobs at the va only if they served!  These scumbags cut corners for bonuses for them!  The drs and nurses should only get good pay and bonuses in a hospital, and that based on patient satisfaction surveys..

As for lgbt counselors or shrinks at the el paso va, there are none..  I've been told this by several shrinks there already:( 

So, today I was busy, and came home and crashed.  My helper has a wife and newborn, who want to help us too..  they are going to do ebay to help me sell everything, so if I choose to move or such:)  I've been thinking of moving closer to a va, but a trans friendly va..  yet it has to be where it is warm all the time to help my lupus!

Last, no call from patient advocate or the lgbt office yet?  I have the rest of the week to start calling?  Let's see if anyone listens..  most don't answer phones or return emails..  I seem to only get responses for this kind of stuff by directly confronting them..  right now, I have no apts in El paso for 3 weeks..  I have several apts here in town, but that won't help:(

And here I was so proud of my va and thought they were doing good:(  I will get them back on track:)  It maybe just the morphine, fentynol,  oxy, cymbalta, and med pot to top it that's giving me this confidence?  By tomorrow,  I'll be miserable from the weather and my adhd will make it hard to decide what todo:(  I'm trying to make a plan tonight, but the only thing I can predict is that things never go as planned!  I'm good at alternatives, but this time, I'm even running out of those?  I hate to just go in complaining without facts..  I just wonder if I should give more time for them to respond when I already know they never do and they are past the date they said they would respond..  I'm trying to win them over with being on the ball about this, eager to help others and trying to no get people in trouble..  but part of me is beginning to think throwing these people under the bus for not doing their job is the only way to get a response..  that's just not me!  Ok, I'm yammering on too much..  I've fixed my issues for now, I don't really need the VA, but this is not right!  I have a right like the rest of you vets to get the treatment that is guaranteed to me..  is there a "Kim davis" sitting on the other end, blocking my actions?  Ok, going to stop tonight..  any ideas and opinions are appreciated..  I just want to know if I make a stink and cause trouble for them, is it the right thing.  We have the last va news thing from a vet who is having issues, but some of their issues seem simple and I think they went too far.  I just don't want to be that next person, yet I want to fix this for us all!  I've been thinking of a lgbt patient advocate system for the va?  They do have reps for women and race, so why not a lgbt section to make sure our rights are enforced?  Maybe there is one, like the lgbt group I've been talking about..  I just won't know until I talk to someone..  ok, nighty night all:)  it's going to rain all night, so it's going to be hell 4 me:(

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Tags: Veteran 2013-003