Dear readers of the page, here it is! My GoFundMe campaign for GAS! Take a look!
Hey there, dear readers of the page! I am so happy right now! We booked our flight to Philly several weeks ago. Today, we booked our hotel, too! So now we have a place to stay and a way to get there.
We don’t know, however, how much the surgery will cost. They will tell us about two weeks before surgery, which sucks from a planning point of view. So we are going to Philly. Who knows if surgery will be pulled off, but we are definitely going, lol! I told Egg that, while Philly would probably be really cool, it’s not a place I currently want to spend ten days in without surgery. It would be so anti climatic, you know?
Anyway, that is the special news for today! A bientot!
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!!
Today, dear readers of the page, is Estrogen Tuesday. I take my shot every other week, and today is the lucky day!
I wanted to check my emotional stability, as right before last shot, I was a hot mess. Just crying over any and everything. I wondered if it had anything to do with my levels dipping to low, you know? But nothing like that happened this time. I feel good. No crying jags, no cramps, nothing. Guess I will chalk it up as an anomaly and keep it moving.
Spotify, the behemoth streaming service, finally sucked me in, dear readers of the page. I have been using the free version for a long time now. Recently, they were running a promotion for 60 days of premium for free. I had heard the commercials before. Fuck – they played it three times in a row all the time. So, on the second to last day, I scooped the deal. Now, I have been listening to commercial-free music, it’s almost been transformative. I am able to skip to which ever song I want to hear. My playlists, which hold hundreds of songs are so amazing without being broken up by commercials. The muic itself is supposed to be of a higher quality (the sound, I mean). As I’m typing this, my playlist jumped from Prince to The Men! Sooo awesome! I think they have got me, dammit!
Today, dear readers of the page, was therapissy day with Kristine, my therapissy. I love, love, love her. She is so kind, and very perceptive! We had another productive session, so all is well on that front.
Egg is healing nicely from gallbladder surgery a week ago Friday. We even went to the gym yesterday. She still has some tightness, but the pain is minimal, at least that is what she is saying.
Fingers crossed, we should be getting some money soon, and that will help us pay for the hotel in Philly. Hopefully, they will still have a room for that length of time. We are going to be there for a clip, so this is important.. The hotel will be near the hospital, which is good in case we need to rush back after surgery.
My mood is stable again. I had a period right before my last delestrogen injection, where I was crying about all sorts of things. I just couldn’t stop crying, and that usually signals a depressive episode oncoming. The one thing that I didn’t have was suicidal thoughts, so that was good, and different from my regular depressive episodes. I’m wondering if it was because my estrogen level dropped too low. There is a theory about trans women having period symptoms. Of course, not the bleeding, but some cramping and definitely being more emotional. I don’t know what it was for me. All I know is that everything little thing was setting of these crying jags, and I was extra emotional and almost down. I remember having my shot on that Tuesday, then evening out slowly after that, to where I am now – an even keel. I really need my moods to stay stable for this upcoming surgery, ya know?!
I am going to drop a couple of pics for the timeline.
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!