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!

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.

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.

Pain Demands To Be Felt

As stated in The Fault In Our Stars, pain demands to be felt; and yeah, I’m feeling it right now, dear readers of the page. This is the worst its been since before my last surgery. I really don’t know what to do anymore. All I do is roll around and moan, use a heating pad on various parts of my body.

Honestly, this post is going to end soon because it hurts my arms to type. Sad state of affairs. I just want this pain over with, and with no gardener in site, I have no good medicine. I have my Cimzia, which I believe is no longer working. I got my colonoscopy moved up to May 8. That is a lot better than May 22, as I really don’t believe I can wait that long to find out what is wrong with me.

You know one of my biggest fears?? It is that I will get the results from the colonoscopy, and they find nothing wrong. This makes me nervous, and honestly, would probably do a lot of damage to my psyche. Fuck, there has to be something wrong. I am not having this pain because my mind is making it up. It sucks. I mean, I have pain all over, and cramping, as well. Not just in my intestines, but in my joints all over my body.

I am going to have to file for disability. I guess I need to get ready for that kind of fight. Honestly though, I don’t know if I have it in me. I was on disability about 5 years ago, but gave it up because I was able to work. What I should have done is just worked part time and try to keep the disability. Now, I have to start the process over, and this is in trump’s amerikkka. We’ll see.

Anyway, thanks for reading all of my moaning and bitching, dear readers of the page. I will check back in soon.

Colonoscopy Scheduled

Okay, dear readers of the page, I finally did it. I scheduled my colonoscopy for May 8 at 12:30 pm. I have Crohn’s disease (if you don’t know what Crohn’s disease is, I encourage you to use your favorite search engine and take a gander) and haven’t had a colonoscopy in about 2 years. This is abnormal for me, as I have had at least one colonoscopy per year for the last 6-7 years, excepting the last two.

I am feeling shitty, and since I ran out of the green medication, the pain has increased twofold, along with other symptoms, such as bloody diarrhea, painful cramping of the large and small intestines, as well as cramping in my legs and feet, hands and arms. I am experiencing nausea, and other symptoms also. I don’t think the medication I’m currently taking is working.

The prep for the colonoscopy sucks. Basically, I cannot have solid foods for close to 16-20 hours.  The food* that I can have consists of chicken or beef broth, gatorade (any color except red or purple, as it will mimic blood in my intestines), stuff like coffee and tea. Basically all liquids. And the prep is going to suck. I will probably be up for most of the night before the procedure.

It’s necessary, though. I need to find out what’s going on in there. My big fear is that the colonoscopy will show…nothing. That is one of the worst case scenarios. I guess another worst case scenario would be needing a bag. But that may not be too bad, except for having to acclimate to it.

If they don’t find anything, then my mind may spiral. I’d hate to think I’m making this pain up. It can’t be true though; something has to be wrong. TBH, I’m a little nervous that they won’t find anything. I guess this is, indeed, my biggest fear. That it is psychosomatic. Oh wells, nothing to do know except wait and take it as easy as possible until the 6th of May.

May is shaping up to be a busy month for me. I will be seeing all but my primary physician and my therapist. I really need to see my fucking therapist, but his fee is high at 180$ per one hour session, with no insurance. I am going to have to get back into him though, so I can get letters for my orchiectomy. But that’s another story to be told in another post.

Thanks for reading, dear readers of the page. Stay tuned to whilehavingtea for more information.