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!!

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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.

Welcome Back

Dear readers of the page, Welcome Back!!!! That is more for me than you. Sorry, I’ve been gone for so long. I had a major depressive episode, where I was majorly suicidal – I was a mess. But that’s over now, thanks to some great therapy, an increase in medicine, support from Egg and my friends and family, and time.

I haven’t worked since Feb, and am going for disability, as I cannot seem to hold a job without my Crohn’s or my bipolar disorder messing things up. My computer has been down for a while, so it has been hard to update the blog, not to mention that I just didn’t feel like it.

I have some news! On July 30, I had an orchiectomy, the surgery I have been writing about for forever. It went well, but I am still healing. As a matter of fact, I had my post op appointment today, and that went well, too! Still healing, but cleared to lift heavy objects again.

Some other big news! I am trying to schedule vaginoplasty for the end of the year. I have a consultation with Dr Kathy Rumer on September 7 at 1pm. It’s a big to do, as it should be. It will be a major surgery.  Maybe I will write more about it in my next post. I just wanted to write a quick hello to let y’all know that I am alive and kicking!

Thanks for reading, dear readers of the page! Until the next post, take care!!!

Follow Up With Dr. Wolf

Today I had my emergency appointment with Dr. Wolf. Turns out his medical assistant, Stephanie has twisted some information that Dr. Wolf relayed to her, and outright lied about others.

Stephanie told me that I couldn’t take any pain medication because I was so close to my colonoscopy date. That was an outright lie. She also told me that Medrol was listed as an acceptable medication in my chart. That was another lie. In fact, Dr. Wolf told me that Medrol and Prednisone acted the same exact way (another thing that Stephanie told me: she said that I could take the Medrol because it is structurally different than Prednisone, thus safe for me to take). Taking either could have thrown me into a manic episode. I cannot believe that she would even say the stuff she said.

So, I get to Dr. Wolf’s office for my appointment at 12:00, and in true Dr. Wolf form he didn’t see me until 1:15. He prescribed me Tramadol for my pain, and also phenergan for my nausea. He had me go down to the lab to have blood drawn. He also requested that I take yet another stool test to rule out c-diff. I have a follow up appointment in two months, and a colonoscopy in eight days. Maybe, we will finally get to the root cause of my current problems. I an going to continue to take Cimzia and Methotrexate subcutaneously. Hopefully, I will get some news from all these tests. I would really hate for all of them to come back negative. Because that would mean I was making shit up, and I don’t feel, deep down, that that’s the case. I still have all the same symptoms; the bathroom trips, the explosive diarrhea, the muscle cramps and spasms ( which have been greatly reduced my massages from Egg), the pain in my entire intestinal area. I am tired of feeling sick, and sick of feeling tired.

I am going to apply for disability again. I don’t know if I will get it this time, as I am not actively in a manic state, which I was last time I saw the state shrink. And to be completely honest, I don’t know if my current shrink will help out. I know Dr. Wolf will assist, as he did last time I tried. Honestly, I’m at my wits end. But there is light at the end of the tunnel, and I guess I will move towards it.

In a different type of news, I was in the men’s bathroom, washing my hands, because although I am full time, I don’t really use the women’s bathroom. A guy, who was at the urninal when I came out of the stall (because I’m still a lady) came to wash his hands, as I was just finishing up. He looked at me, then stepped out of the men’s room, then back in and apologized. LMAO, he thought he was in the wrong bathroom. HAHAAHA awesome sauce. I think it’s time to work on that name and gender change. I still need my orchi before I can change my gender in good ole GA.

So that’s it for now, dear readers of the page. Stay tuned for test results and colonoscopy prep in the coming days.