Pre Op Phone Call

Hey there , dear readers of the page. I just got finished with my pre op phone call with the surgeon’s medical assistant. It was as to be expected, but I have a lot of things to take care of before the 9th of April. I have to have a physical. Problem is that I had one last August, and apparently my insurance only allows one physical per year and a day. They have what is called a pre op appointment, which, as I understand it, is a way to get around the one year and a day physical restraints. But the problem is that my GPs’ only appointment in the near future is April 18. I need to have all this work done and sent in by April 9th or my surgery will be cancelled. Another wrench in the system is that I can’t have this physical before March 23rd.  It just does not give me a long window to get this taken care of. I’ve already called my GP office, and they are trying  to find another doctor who will be able to work around this with me. I certainly hope this is the case. One of the things that I am beginning to realize is that it is extremely hard to get an appointment with my GP, and that is frustrating.

I also have to do lab work, which means that I will have to pay lab corp before I can have the blood work done. This is going to stress me out, but it has to be done, so I am going to fight to have it so.

And depending on how I feel, I may still change back to vaginoplasty, rather than zero depth. Still a decision that is up in the air, and is based on my Crohn’s acting up. We shall see….

Medical Versus Emotional

Transition talk time, dear readers of the page. This probably won’t be a long post. I just wanna get some shit out of my head.

Medical transition has been going great. I followed all the rules, dotted my I’s and crossed my T’s. I started my transition the way many trans people do – searching for something, anything to describe how I felt. I saw all the Jerry Springer talk shows and knew that shit wasn’t me. But still, there was something that kept nagging at me. So, I took to the internet, came out to myself, then came out to my intake counselor when I was at a day hospital for a month. After a disastrous coming out with Egg (I was outed by a family therapist who didn’t even know me or Egg), I hopped my ass back in the closet. Not an uncommon phenomenon with trans people. When I finally jumped the hell out of the closet, it was because I was going to die if I didn’t. And I’m not being dramatic. So, I got a therapist, and started working my way through the system. First up was therapy, then a recommendation to my endocrinologist for hrt. I started hrt in June of 2016. Then, in July of 2018, I had an orchiectomy (removal of the testicles). Now, I’m scheduled for GCS in two months. So, all in all, the medical part of my transition is going well.

The emotional/mental part I’m not so sure about. I could go into a myriad of reasons why I don’t think that I am progressing. But, at the heart of it is that I have become isolated. Part of that has to do with my mood disorders and invisible illness. I don’t want to shit myself in public. Because of my four month depressive episode last year, and because of my Crohn’s disease, Bipolar disorder, and GAD, and also because I can’t work due to trying to get disability, I have become increasingly isolated. I was a social butterfly when I was younger, but all that changed with multiple manic and depressive episodes in a short amount of time. Now, I only have three friends outside of Egg, and I love them dearly. But they aren’t trans or even lgbqia folks.  Well, accept for Egg. I feel closed off, and I haven’t been doing much to change that. Which sucks, but it’s so draining trying to fill the mental gaps of being a 45 year old trans women who has historically had few lgbtqia friends. All I want is to find some people like me, ya know?!

With that in mind, I called up the leader of a trans/ally support group near me. It’s one that I could potentially go to without having to drive in downtown Atlanta. It is in the burbs, so who knows what kind of people go to this group, but I am in need of support and companionship. I want to get out of the house, maybe do some volunteering. I love advocacy, but don’t think I have enough spoons yet for that.  I guess since I’m getting older, I am more retrospective, and while I have had a great life, thanks in part to my family, both blood and not blood, I still find myself on a precipice. I am looking over, wanting to take that jump, but am afraid to do so. I am afraid that my transness will be dismissed. I am afraid of what people will say about me the minute I open my mouth to speak. I am afraid of a lot of things. I want to get to the point where my pride in who I am becoming shines through, enlightening everything and everyone. So, hopefully, this first step (calling that trans support group) will kick start a renaissance of my mental makeup. It’s time to try. I have become rather introverted, but I wasn’t always this way. In my twenties, I was rather outgoing. Prolly my manic or hypomanic episodes that gave me so much energy. I was unmedicated for most of my twenties. Once I got out of that funk, and got back on the meds, my mind slowed down, and my willingness to be out in the foolishness left me behind. Can’t blame it all on the meds. There are certainly other factors, like the fact that I stopped doing coke everyday lol.

Anyway, I want to get out of my head for once. And I think I am going to try.

Call From Stephanie

I got a call from Stephanie, Dr. Wolf’s medical assistant, today. I had some blood work done last week, and the results just came in. My markers for inflammation (c-reactive protein and sed rate, I think) came back high, which to me is nothing shocking. I can tell I am still in a pretty nasty flare. ‘

Stephanie has assured me that adding prednisone to my already impressive list of medications will help alleviate the flare. I don’t know, I haven’t been on the evil prednisone for almost fifteen years, maybe longer. And the last time I was on it, it was at a high dose, like sixty mg. Yeah, I had many many mood swings during that time. It was insane.

Now, I’m going to be taking a lower dose at twenty mg a day. This is supposed to help everything heal over, and hopefully stop all the bathroom trips and crazy urgency. Down with the cramps, too!!

Visit With Dr. Wolf

Dr. Wolf is my gastroenterologist, and a great one at that. He is extremely compassionate, and listens to my problems and concerns. He is always busy, and that means he is almost always late to my appointments. Today was no exception. He was running about twenty minutes late today. No problem for me, as my appointment was early enough in the morning. When he finally made it in, we had a nice chat. I asked him, and the ladies at the front desk to update my preferred name and gender, which they included in the system. Nothing legally can be done until I change my name/gender marker on my license, then with my insurance company.

I asked Dr. Wolf specifically about Cannabis and its’ use to treat Crohn’s disease. He said there isn’t enough information to support cannabis for Crohn’s, except in the most severe cases. I am moderate/severe which means he doesn’t agree with cannabis as a standalone treatment. I didn’t tell him (this time) how much cannabis keeps my symptoms at bay. One thing Dr. Wolf did say, however, is that he believes, at this point in time, that it doesn’t treat Crohn’s. I call bullshit, but he has the degrees, so whatever…

We talked about upping my Cimzia dose to four hundred milligrams every week. So add another shot to the already congested pile. Also, we are going to attempt to use prednisone. Prednisone is an evil drug, that at high doses causes mania and moon face and a generally bad disposition. I am only going to be taking 10mg daily, so I hope that takes care of my bathroom issues as well as not sending me into a manic or mixed episode. I really don’t want roid rage either! Yuck!

Other than that, I have to get some labs done. I have an appointment with my nephrologist tomorrow, so I will get the labs done then, as the lab company is right down the hall.

So that’s my Crohn’s adventure for today. Enjoy the rest of your day, readers of the page!

Finally February

Hey there, dear readers of the page. It is finally February. January seemed to go on forever. It was a long month.

Let’s switch gears and talk about my gofundme campaign. It has stalled. The last donation was two weeks ago, and I cannot seem to find a way to get this campaign out to a larger audience. I was hoping that friends of mine (what few I have) and associates on FB would share it with their friend groups. I think one of the problems is that my friends are all cis hetero, ya know, so there’s no traction. This is certainly putting our trip to Philly in jeopardy. And that sucks.

Another thing that sucks is that I won’t know how much I owe the surgeon and such until two weeks before the actual surgery date. This is pretty stressful because it doesn’t allow us the time to prepare, money-wise. It’s like, how much do we actually need. We’ve already booked our flight, but not where we are staying. Accommodations for the time we are going to be there will be about 2500.00. Ah, the stress is getting to me, can’t you tell? All I can think about these days is how we are going to scrape this money together. We already filed our taxes, and I am hoping that Egg gets a bonus at work, along with a pay bump. She deserves it. She is the rock star of her division, and everybody knows it. Show her the fucking money.

Disability – oh, where to start? I filed for disability about seven to nine months ago. Still no answer. They are still sending me packets to fill out and return. And I am supposed to be on the fast track, but damn this is taking forever. I’m probably going to have to meet with a state-appointed psychiatrist. I had to last time I was on disability. I was in a manic episode then. I am not now. So the interview could sink me. All I know is that I was expecting disability to kick in by now, and it hasn’t. But, I know, in regards to disability, I am nothing special or new under the sun. The adjudicators have seen it all before. I’m just hoping that they believe me. I have tried my best to hold down a full time job, but my disabilities always crash the working party. I have to use the bathroom too much, thereby affecting my ability to be productive. Also, last year I had a four month depressive episode, where I lost the ability to do most basic things like taking a shower, concentrating for long periods of time, and a complete drop into the abyss of nothingness. I wanted to be swallowed whole, an not live anymore. I was extremely suicidal,, which is a feature of my bipolar depression. But y’all know how it is. I couldn’t tell my therapist the full on bipolar response because I didn’t want to be hospitalized. Anyway, this is where we stand on the whole disability process. It’s a lot of hurry up and wait. For months and months and months. And this is why so many people give up on the process and try to go back to work, often with disastrous results. I am lucky and privileged to be in a position where, while I need to work, my Egg supports the both of us. So, I shouldn’t be bitching too much. I know a lot of people go it alone, and it’s gotta be rough.

So that’s it for this entry. Please join me soon, same place, same channel for another update. A bientot!

2019

Welcome, dear readers of the page! Thanks for joining me in 2019! 525,600 minutes! Time to do a minor year in review for 2018 (transition-related), then onto a minor list of things to accomplish in 2019.

2018 – The Good – I am alive, and I don’t take that lightly. My mind played some nasty tricks on me for 1/3 of the year. I had a fecal transplant to curb my recurrent c-diff. I haven’t had c-diff since, so yay!

I had my orchiectomy (surgical removal of the testicles) July 30. The surgery, and the recovery went smoothly. No major pain, no issues like with my surgery in 2007.

I set a date for my GAS. It is currently scheduled for the end of April, so, just around the corner.

2018 – The Bad – I got c-diff twice in three months. I had a seven-day hospital stay, and have been in a flare the entirety of 2018.

I thought that I would have already done my name change, but it is more practical to wait until after GAS. I could, legally, change my name and gender in the state I live in (the requirement is surgery, and the removal of my balls counts) but my GAS was approved under deadname, so that is how the hospital in Philly will check me in. I don’t want any snafus at the last minute because of my ego.

My voice is still…well, my voice. But it is still deep, which sucks. I guess I have to take the blame entirely. I bought Kathe Perez’s cds. She is a voice therapist who works with a lot of trans women to feminize their voices. Right now, I pass on sight alone maybe 65% of the time. But when I open my mouth, pronouns are automatically switched, and apologies bandied about.

I haven’t worked since Feb. I am trying to get on disability, but the process takes forever.

For 1/3 of the year, I was in a severe depressive episode. My episodes always include suicidal ideation and planning. I feel bad that I had all my friends and family in a constant state of worry. Egg was amazeballs, as always. She gave me space, but not too much. She let me mope, cry, be despondant, be empty, be paranoid, and every other feature of my episodes, but she was always nearby.  That will always be my saving grace.

There were more things that happened,  Oh yeah, my mama got, then beat cancer! So, great outcome from a scary situation! But yeah, as I sit back and think, more stuff pops into my head, so I am gonna leave it at this.

2019 – WOOT!! – Now, I am feeling more optimistic about 2019 than I remember feeling about 2018.  While still in a flare, I think adding Flagyl to my med cocktail for my Crohn’s disease is helping. I am not going to the bathroom 10+ times a night. Now, it is more like 5-7 times. Definitely more manageable.

Things I want to do – get through GAS, heal, heal, heal. Write more, write better (learn the difference between “wear” and “where”), write faster and harder. Start to learn an instrument, pick up a language. I want to get my name/gender change taken care of. Get my passport with my correct name/gender, as well as all other paperwork. I want to volunteer some. I want to meet a trans person, irl. That means putting myself out there, something I am terrified to do. I have grown comfy staying at home, and there is nothing wrong with that. It’s just that I want to explore the community more. I want me and Egg to continue to grow together. I want to foster closer relationships with me friends.

And there you have it, readers of the page. A short, and in no way comprehensive, list of my 2018 and hopes for 2019. Now, for me, it’s time to brew a cup of Christmas tea and watch some Premier league football!

 

All The Poop

I don’t think I wrote about my fecal transplant yet. That’s right dear readers of the page, a freaking fecal transplant!!!!  You can scroll back to April of this year to read about my Crohn’s disease issues. Well, as it turns out, while my Crohn’s was active, it was the fact that I had c-diff and was dangerously close to renal failure that put me in the ER, then into the hospital for a 7 day stay. I was pooping 20+ times a day, so of course I was severely dehydrated. It was a big to do.

Because this was my 2nd time this year getting c-diff, the traditional meds used to treat it were no good. My doc suggested a fecal transplant, and yes, it is exactly as it sounds. A donor, a rigorously tested donor poops somewhere, the docs harvest it, make it into a slurry or milkshake-like substance,  then , using an upper endoscopy procedure the slurry is deposited into the small intestine.

The procedure was pretty fast, and I was able to leave the hospital afterwards. The transplant was done on the 7th day of my hospital stay.. And while my Crohn’s flare is worse, I haven’t gotten c-diff…yet.

All the nurses were awesome, and used correct name/pronouns throughout the entire stay. Same with the docs and everybody else. One of my friends came to visit. My family came, too. Egg was awesome. She was sick too, but drove me to the hospital. Later on in the week, she brought me Waffle House! So much better than hospital food!

End result: a success. So far, no c-diff. Only time will tell.