The Story of Lori

[Mariah]

Lori,

That is wonderful news. So glad this change has worked out for the better and to aid you further. Hugs
Mariah

[Oldandcreaky]

After two years of stasis, I am finally seeing action to help me move forward. I am very thankful.

I'm thankful for you too.

[LoriDee]

[POSSIBLE TRIGGER WARNING]

When I came out to my parents, my dad had many questions. One of them was whether or not I would change my birth certificate. I told him that I had no plans to.

My birth certificate is a historical document. For our friends across the pond, an historical document.    There is no place to record gender, and the doctors and staff have no way of knowing what the gender will be. So from my point of view, the record is accurate. It describes the observations of medical personnel at that moment in history. I am not ashamed and I have no intentions of trying to erase my past. It starts with birth certificates, school records, military records, and on and on. There is no reason to change any of it.

As many have pointed out, we are not the same person anymore. I acknowledge who I was then and what I achieved. I learned a lot from that person, and what he learned shaped the woman I am today... good and bad.

I was inspired by Susan's progression photos showing what she looked like over the years. I think it is brave and a bit therapeutic to be able to look at where you came from and see how far you have come. I don't believe anyone on this forum has any doubt that Susan is an amazing and wonderful woman.

As a part of The Story of Lori, I will share with you where I came from. [POSSIBLE TRIGGER WARNING]
If you don't want to see me in a beard, or stitches from eye surgery, proceed no further.

The Story of Lori (Photos)

[imallie]

Love love love this Lori.

I, of course, 100% percent understand and respect those who determine and decide that the best course of action for themselves is to erase all traces of their life up to the point of transition. Whatever works for an individual is the right answer for that person - it's beyond dispute.

I just happen to come at this the way you do. When I came out to our son I described it like this:
"I wouldn't change anything about my life up to this point. I'm right where I'm meant to be. With your mom and with you. I don't regret a single second of any of it."

That doesn't mean that I didn't spend years with crushing guilt, confusion, longing to make the crispy shell match the noughty center... but that's all part of what got me here. It's all part of the totality that will make me the woman I am and will continue to grown into.

So especially with friends and family... it's nothing I am ashamed of.

Love,
Allie

[LoriDee]

@imallie

Exactly! Well said.

We all walk our own paths. This one is mine. Sometimes we meet people on different paths. Sometimes our paths cross. Sometimes we go in opposite directions. It doesn't mean anything except we are on our own path.

Hugs.

[LoriDee]

I am going to vent here for a moment because I want to strangle someone. Well, not really. But...

When I first started my transitioning, the VA told me that my care would be handled by the Minneapolis VA Endocrinology Department. I had several appointments with them via telemedicine. They did the initial 1,000-question interview to ask every conceivable question to be absolutely certain that I understood what I was doing and the risks involved. They wrote my first prescriptions. I got tired of seeing different interns each time who would keep asking the same questions. You have informed consent, can we PLEASE move on? Finally, I talked to my Primary Physician and told her I wanted to see someone local. Someone who will get to know me and I can get to know them. She made it happen.

Three times I requested electrolysis for hair removal. No one in the VA here does it. No one in the local community does it. So my requests were closed as "Service Not Available". I did a Google search for electrolysis and came up with 20 providers in this region. Denver had 14. There is a school in Wisconsin. Chicago will sedate you with general anesthesia so multiple technicians can clear you in one session. I gave my list to the Community Care Coordinator. She claims that she called every one of them. They are all a cash/credit provider and demand payment at the time of service. They don't want to wait for the VA to write them a check 3 months later. Since the VA does not pay with cash or credit, "Service Not Available".

Fast forward to this week. I was speaking to my LGBTQ++ Care Coordinator and she has been in conferences with other Coordinators throughout the Region and at the National level. She said they have contacted every State Health Department and requested a list of all licensed electrolysis providers in that state. Then they called each one and asked if they would be interested in working with the VA to help veterans needing hair removal. One said yes and is already signed up. Another one said yes and is in the process of doing the paperwork.

Tonight I stumbled onto the Minneapolis VA website. Under the heading, "Transgender, gender expansive, non-binary Veterans' guide to navigating Minneapolis VA" is a list of services that the Minneapolis VA provides. Going down the list I read:

"Hair removal

Veterans in the Minneapolis VA Health Care System are eligible for facial hair removal by laser or electrolysis. This care is provided through a care in the community consult. If you have been diagnosed with gender dysphoria, your primary care or mental health provider can submit a community care dermatology consult for this medically necessary procedure to alleviate symptoms of gender dysphoria."

In other words, the Minneapolis VA already has a provider that they are sending veterans to. So why did this not come up early in my transition when my care was through the Minneapolis VA? Why was this not brought up during the Midwest Care Coordinator Conferences that happen every week? Why didn't anyone know this until I found the website by accident and sent a link to my Care Coordinator?

Who the hell is steering this boat?

Come Monday, somebody got some 'splaining to do.

{End of Rant}
Thank you for attending this Ted Talk.

[imallie]

Wow... how far down the road out of pocket are you on hair removal, Lori?

I guess the good news is, hopefully this means you can get it covered going forward. But I wonder if there's any chance for reimbursement for past expenses? I'd guess not but who knows?

All my electrolysis has been out of pocket.. $85 per week, for 16 months now.

It's funny, I remember people saying that hair removal for your face would cost like $10k and I thought that was crazy... but now I get it completely.

[Gina P]

Lori, typical government run agency. If you don't specify exactly, fill out every forum correctly, its on you. They love to say the have made available $xxx in funds for... but make it almost impossible for anyone to get.
Good luck. 
Hugs Gina

[LoriDee]

Wow... how far down the road out of pocket are you on hair removal, Lori?

I guess the good news is, hopefully this means you can get it covered going forward. But I wonder if there's any chance for reimbursement for past expenses? I'd guess not but who knows

My problem is that there is no one local who does it. I would have to travel at least four hours driving to the nearest one. I can't afford to fly. Flights in and out of Rapid City start at $500 round-trip.

So I have to deal with it as best I can. I have tried creams, blades, electrics, and epilators (OUCH!). @Gina P is right. The VA moves at the speed of government. They have been making us promises since 2016 and no meaningful action in that direction. Lots of political rhetoric.

I talked to my psychologist about this. Is it any wonder that I am stressed out, frustrated, and depressed? That is the magic word. They freak out over depression because veterans (especially LGBTQ Veterans) have a high rate of suicide. I have told them that my spirituality will not allow me to commit suicide, but the diagnosis of "moderate to severe depression" lit a fire under them. Now that I have their attention I use that as leverage to force them to do their jobs. My Trans Care Coordinator told me to advocate for myself, be demanding, and hold their feet to the fire. So that is what I am doing. At least now, I can almost see a light at the end of the tunnel. Hopefully, it isn't an oncoming train. 

[imallie]

Oh I'm so so sorry to hear ALL of that. People talk about the pain of electrolysis... and I don't discount anyone who does experience it that way... but for me it is beyond a doubt the most affirming hour I spend each week.

Everyone's transition is unique to them, however. So I hope and pray you are able to find a solution to this as soon as possible that works for you. The way you are self-advocating makes me confident that if there IS a way to crack this, you will find it!!

Good luck!
Allie

[LoriDee]

Received a message from my Trans Care Coordinator, regarding hair removal issues.

Yes, Minneapolis has a non-VA provider that they use. No, Minneapolis is not part of the community in Rapid City, SD. It is not a question of whether I need it. It is not a question of it being "medically necessary". Previous requests for LOCAL care have been authorized, then died on someone's desk as "service not available".

The issue is this: Rapid City VA and the Black Hills System have no one local. Minneapolis does, but it is a non-VA provider. (Think HMO out of network). Minneapolis can send vets to their provider. Rapid City can send vets to the Minneapolis VA, but not a non-VA provider in Minneapolis.

So what they are working on is an authorization for travel to Minneapolis for medical care. That may mean I have to check in at the Minn. VA and then let them refer me to their local provider. They can authorize travel and expenses only under specific circumstances, so they are trying to word the request so it hits all of the checkboxes and gets approved. It feels like no one has ever transitioned in South Dakota through the VA and I am out there swinging my machete, clearing a path through the jungle. I'm ok with that, but I know that I am not the first veteran to transition through VA in this area and I am not the only one now.

It's a good thing that 14+ years of Army training has helped me develop the critical skill of "Hurry up and Wait". {sigh} More to follow

[Sarah B]

Hi Allie

Oh I'm so so sorry to hear ALL of that. People talk about the pain of electrolysis... and I don't discount anyone who does experience it that way... but for me it is beyond a doubt the most affirming hour I spend each week.

One needle or 16 needles, at a time?     

Hugs and Hugs
Sarah B

[imallie]

Hi Allie

One needle or 16 needles, at a time?     

Hugs and Hugs
Sarah B

Just one, and a lot of lot of laughs.

My quarterly Botox is 40 injections, many of them much closer to my eye... and while that doc is super nice, very kind and gentle... not nearly as many laughs.  Plus, she doesn't yet know I'm trans. 🤫😂. No, I need to tell her.. likely at our session next month.

It's just REALLY difficult to find a time to shock someone when they are really close to your face with dozens of ultra sharp needles. Surprisingly, it does not naturally come up in conversation.

[LoriDee]

The latest in another saga with the VA.

I legally changed my name in December 2022. I sent copies of the court order to everyone (VA, Social Security, credit bureaus, banks, credit card companies, vehicle registration, and driver's license.)

I moved into my new apartment in August 2023 and notified the VA of my new address. On the website portal, after logging in, I can access a Health Summary document which is a copy of my medical records that I can download and share with non-VA providers.

I noticed that my address was not correct. Just a minor thing, they forgot to put the apt number and the last four of the zip code is wrong. Then I noticed under the insurance providers section, my deadname listed about ten times in various spellings and variations. One of those entries was a nickname, and the Medicare account number isn't even mine!

I have talked to the Administration office and they showed me their computer screen. That is not what they have on file for me. They show my correct legal name, address, and account number. Then I went to Patient Accounts and talked to them. They have a very nice woman whose title is Insurance Billing Verifier. She showed me her computer screen. She has the correct information on file and no outdated stuff. So where is the information in my online records coming from?

I logged into VA.gov and checked there. Everything they have on file is correct and accurate. I contacted the Help Desk and submitted problem tickets. Later I got an email saying the ticket was closed and the issue was "resolved". I logged in and nothing changed.

Last week, while talking with my Trans Care Coordinator, we were talking about my stress levels and various triggers. They work in the Mental Health department with my psychologist. I asked her what I would need to do to have my deadname completely removed from my medical records. She started investigating.

She is friends with a new Help Desk representative and she explained my situation. I had taken screenshots of what is in my file vs what is in the VA records and the records held here in my local health care system. I suspect that somehow somebody's records got mixed up with mine and the two are linked. I wonder if there is a veteran out there somewhere complaining about his Gender Dysphoria diagnosis and subsequent appointments with Gynecology.

I got a call this morning from the Help Desk rep. He said I needed to call the Help Desk number and a technician should be able to get this resolved. I told him I had done that many, many times without success. Maybe he alerted someone that I was calling. So, I called and explained who I was and what the problem was. They can't help me because they cannot see my records. Hence they can't change anything in them. I need to call the Local Help Desk Coordinator to get that changed. Got the number and the extension.

I call and get the standard menu. I enter the extension number. Another menu, I wait and get a voicemail. I leave my contact info and a detailed explanation of what I need help with. A few minutes later, I got a call from the same guy who called me this morning and sent me on this goose chase.

He explained that he cannot see my records and, therefore cannot change anything in them. However, he is willing to escalate the issue to someone who can. He agreed to meet me tomorrow at the clinic after my doctor's appointment. We will sit down with documents in hand and he will call God or somebody to finally get the issue to the right person. After nine months or so, it still has not been resolved. How hard can it be to fix an address?

So what did I do this afternoon? SHOPPING!

[Northern Star Girl]

@LoriDee
Dear Lori:
You had such high hopes for a good outcome with your face-to-face
meeting today with the VA people...

.... and unfortunately you hit the government red-tape brick wall.

So, I was glad to read that after the disappointing meeting with the VA you
proceeded to have "shopping therapy"  .... one of my favorite things to do
when things go wrong during the day, and chocolate helps too.

I trust that you will finally get things resolved... you need to continue
to be persistent.  The squeaky wheel gets the grease, but don't squeak
too much and in an aggressive way.... wheels like that get replaced and/or
removed. 
Kindness, understanding and polite attitude... and persistence
will hopefully help unblock the bureaucratic brick wall.

Get some ice cream, chocolate, and buy a new pair of shoes...
... that usually helps me in times of distress.
HUGS and many more HUGS,
Danielle

[EllenW]

Lori,

I am sorry for all the problems you are having. FYI,  I had a similar issue at my pharmacy. It took forever for them to find the software bug that was causing the automated phone system to say my <deadname>.

Ellen

[LoriDee]

I am using their own rules against them.
You want to contact me? Fix my address.
Stop triggering me with all these wrong names in my file.
And the other one was in the Allergies section. It says that there is no allergy assessment on file at the West LA VA Medical Center. Of course not, I've never been there!
So where is the allergy assessment that was done here a year ago? Why isn't that in my records?

The Help Desk Rep admitted that these errors could be quite serious. I didn't tell him that all 80 tests were negative and I have no allergies. But what if it said I was allergic to penicillin? And it isn't listed in my medical records. Tomorrow is the face-to-face meeting. I have all my documents. Hopefully, I have their attention now. Squeaky persistence. 

[LoriDee]

A quick update.

I had an appointment with a Nutritionist this morning to discuss my low vitamin levels in February's labs. The Help Desk Rep (Carl) agreed to meet me at the clinic too.

I was expecting bad weather so I left early. (Of course, now it is a beautiful sunny day). I was early enough to speak with Carl before checking in for my appointment. We went over all of my documents and records. With screenshots printed out, he was able to see what I see when I log in. He told me that he had already escalated my case to the National level and that he would forward the documents I gave him. Things are looking up.

Then I met with the Nutritionist who didn't tell me much that I didn't already know. "Eat more vegetables". My response was "Have you been to the store lately?". Ok, I will work on that. She gave me a bunch of handouts from the FDA on meal planning, shopping lists, etc. Overall, a good visit.

Then I got home and began reading all of what she gave me. According to the meal planner I will need to buy turkey, chicken, tuna, Canadian bacon, oranges, apples, grapes, bananas, lettuce, tomatoes, fruit juices, vegetable juices, potatoes, noodles, hamburger buns, whole wheat bread, and dinner rolls.

Right.

1. That would cost more than what I pay to rent my apartment. (not an exaggeration).
2. Most of that would spoil before I could eat it all. I know because it has happened many times.
3. I would need a much bigger refrigerator/freezer just to hold it all.

I am not a good cook and I don't enjoy cooking. But I agreed to try to develop better habits and maybe build a new skill set. But with depression comes a lack of motivation and energy.

I do recognize that there are many things that I need to work on, and they are all interconnected. But conflicting advice is not helpful. Buy this much food. but Watch your budget. Exercise outdoors in the sun to get some vitamin D. but Stay out of the sun, you have already had 7 skin cancers removed. Wear sunscreen. but Wash your face four times a day or more.

Sometimes it feels like I have one foot nailed to the floor and I am running in circles going nowhere.

It will work out and I'll get there. Baby steps, one at a time. Any progress is still progress and I count my blessings every night.

[davina61]

Dont think much of your nutritionist , avoid fruit juice as its full of sugar, no white bread as its "empty" calories. Avoid ready meals as they are full of chemicals, salt, sugar and fat. Plan your meals with a good balance of veg and meat and only buy what you will eat that week (thats if you do a weekly shop) Frozen veg and fish is a good store cupboard standby as well as tinned veg. 

[LoriDee]

Thanks. My Primary warned me about fruit juice. She said when you eat the fruit, it has fiber which slows digestion so you don't get a spike in blood sugar. With juice, it goes straight into the bloodstream with nothing slowing it down.

I questioned why I needed bread and buns and dinner rolls. The intent is to provide a variety. Fine. But I eat when I am hungry and for no other reason. Occasionally, I will treat myself to a Buffalo Burger or a steak dinner. But for the day-to-day meals, protein is protein. I switch between chicken, pork, and tuna. I have been slacking on the veggies, so I will start incorporating more of them into my meals.

Thanks for the advice!
Hugs!