Whoa Nellie... this is a heavy journal. Get yourself some tissues.

Let's start with November, after Troy was laid off. I had my annual visits to the hospital to keep me on the transplant list. During my visit I met with my doctor, Dr. Zervos. He is the Associate Director, Abdominal Transplant Center / Chair and Medical Director, Liver Transplant Program -  basically he's the head of it all. We were talking and he had said I would be a good candidate for a hepatitis C liver transplant and they can cure Hep C now. During the opioid epidemic there were lots of otherwise health livers going to waste because they were infected with hep C. They were the livers and kidneys of people who OD'd on opioids. The docs saw these potential life saving organs go to waste and decided to give it a try. They have done several hep C organ transplants and all the people recovered from hep C and got themselves a new lease on life. These are both kidney and liver patients. So this sounds pretty good option, but still leads to me having a transplant. I'm still on the fence with this one. I should also mention how I would rather not have a transplant but everything we can try has been tried to date. 

Knowledge grows, new medicines are made every day. Evolution, progression. Whatever you want to call it.

Let's move forward to a few days ago. I was on FB. here are 2 support groups I am part of on FB. The ALF (American Liver Foundation) has a support group for PBC. I was checking out what's new. As I was reading an intro post from a new fellow PBC-haver, someone in the comments mentioned there were 2 new drugs expected to be approved by the FDA this summer. Seladelpar and Elafibranor. I looked these up and found some good info on them from the NIH. Here's the things I looked at: 

• https://pubmed.ncbi.nlm.nih.gov/38381664/ 
• https://pubmed.ncbi.nlm.nih.gov/37904314/
• https://pubmed.ncbi.nlm.nih.gov/37962077/

So the too long; didn't read (TL;DR) part of those aka the conclusions are:

• Conclusions: Treatment with elafibranor resulted in significantly greater improvements in relevant biochemical indicators of cholestasis than placebo.
• Conclusions: Seladelpar was safe, and markedly improved biochemical markers of cholestasis and liver injury in patients with PBC. These effects were maintained or improved throughout the second year.
• Conclusions: In this trial involving patients with primary biliary cholangitis, the percentage of patients who had a biochemical response and alkaline phosphatase normalization was significantly greater with seladelpar than with placebo. Seladelpar also significantly reduced pruritus among patients who had moderate-to-severe pruritus at baseline. The incidence and severity of adverse events were similar in the two groups.

I bolded and italicized the important parts. Alkaline phosphatase is one of the things measured. The higher the number, the more itchy I am. Not everyone experiences what I do with this disease. Most people get tired and exhausted easily. Only a small percent of us actually itch non-stop. The itching is the whole reason why a transplant is even being considered. My QoL is not great. I've adapted but I still can't go out like everyone else can. I can't be out for too long before I feel like I'm going to have a panic attack or meltdown from the itching. I need to stay in a cool place. When I go to stores, doctor offices, anything, I have a folding fan in my bag that I take out so that I can survive the trips. The medicines I take help but not enough. This includes the medical cannabis... which naturally means I ain't driving myself anywhere once I've had my cookies. Yes I make my own edibles it's a lot cheaper. Anyways...

I contacted my doctors asking about these medications. I'll be meeting with Dr. Zervos to discuss these medications as an option for treating my disease in the coming weeks. The nurse feels I would be a good candidate for these. I am hopeful as well. If either of these meds can stop this itching... I won't need a transplant. Life can resume. I can go out and be me again. Well a better me than before.

There's that too. While I've been unable to do much, I have worked on myself a bit. I have certainly learned to have more patience with myself and even better patience with others than I used to have (which is already pretty high). I've made connections with so many different people. I've learned a lot about myself and what I want from life. And I was doing good. 

Without too many details (because things can change and more info may become available), yesterday... something happened that was like a knife in my heart. Maybe I need to backtrack here for a moment to help y'all understand better.

Hey... did you all know something? I have struggled with my self-worth for my entire life. I've always felt that I was unwanted. That I don't matter. And I try so hard to meet other people's expectations in the hope that they will accept me, praise me, approve of me. That SOMEBODY wants me around rather more specific people. I keep chasing after the ones who don't seem to want me, completely ignoring the ones who do. This is a lot because of how I was raised I'm sure. That whole blood is thicker than water. Family strong etc. etc. I learned what "blood is thicker than water" means though. “The blood of the covenant is thicker than the water of the womb.” The saying means that chosen bonds are more significant than the bonds with family or “water of the womb.” More directly, it means that relationships you make yourself are far more important than the ones that you don't choose.

Yesterday, maybe there was some miscommunication somewhere (I'm remaining open minded to this), but the knife I felt was being confirmed that I wasn't wanted. I have always felt unwanted but didn't want to believe it. I cried a lot. It's been a while since I've hurt that much. It hurt. It still hurts. And in some ways - it feels like a relief. Why relief? Because it feels like it was made clear to me that I wasn't wanted, and if I'm not wanted, I don't need to keep seeking approval from these people. A part of me is hoping there was some miscommunication in all of this because of that small Michelle inside who just wants to be unconditionally loved by these people. I have to leave this vague because I've not heard back from them since I presented some information. I try not to deal with absolutes and keep an open mind. 

But this doesn't change how much it hurt. Having a fear confirmed doesn't feel great., but I'm also looking at this as growth for me. The universe is trying to show me... tell me something here. Things don't happen to me, they happen for me. That's a way I try to view these situations when they come up. Maybe this was a huge misunderstanding by all parties. But if it's not? Life lesson learned and I move forward. 

I spoke with one of my siblings for a long time last night. Part of why I'm doing this entry today. They know that I communicate best through written means and have tried to help other understand that. That means journals, letters, emails, text messages. It gives me the ability to reread what I'm saying and to make sure I'm responding and not reacting to others. My mind yesterday was drawing so many conclusions. Grasping at straws, at threads. Like did these people finally realize I was non-binary also known as a type of transgender (not that I've been overly quiet about that)? And I know how at least one of them feels about trans people. Some of the closest bonds I've made are with trans people. Did these people figure out I was a furry? Yeah. Here it is people. I'm coming out with it. I am a furry. I've always been. The community is beyond supporting and caring and loving in some of the most wholesome ways. These are the people I've made bonds with. If you know nothing about furries, ask me. Don't rely on any popular media, tv shows or what not. Talk to an actual furry. We are everywhere, including in your own families. UwU

Back to the speaking with the sibling. They said something to me... and it hit so hard.

Has anyone ever worried about me? Is Michelle ok? And the answer is probably... of course. Michelle will be fine. Michelle will be ok. Michelle is smart, she can handle this. Michelle is fine. Have I ever said to you don't worry, I'll be fine, I always am? Guess what... I never am. I just fill the role because that's what is expected of me. And this sibling... I'd die for them because they clearly understand what I struggle with and can see what I cannot. (and I am tearing up right now typing this because of how deep this bond is.) I am so thankful to have them in my life. There are no words to describe it. Earlier yesterday I told a friend I was having a bad brain day and trying not to think about it. They said they hoped I would be ok and wished the best for me. I almost instinctually replied... "I'll be fine, I always am". But I stopped myself from replying that way. Things happen for me, not to me.

Will I be fine? Sure... Eventually I will be fine. I have spent my life adapting to everything thrown at me. I adapt, survive, and try to continue to strive, eventually. In the meantime I can assure you I am not fine. It took a lot for me to even make this entry because I don't know how people are going to react. Publicly stating somewhere my family can read that I am part of the transgender community and a furry... I'm afraid. I don't know who is gonna cut me off, who is going to reject me even more. I don't know what support I might lose. But if people leave me because of who I am... because of who I have always been but just didn't have the words for it... that's not a me problem. I'm being the best me I can be. I try so hard. It's exhausting but I want to be a better person. I want to be able to be like the people who have helped me to see there is some value to me existing. To have their strength of conviction. To be sure of my decisions. To... love myself for who I am and not who I think others perceive me to be. 

This may sound rambling but welcome to my head. This is real Michelle here. I promise you I have reread this entry at least twice and edited it to be more understanding. But the TL;DR of it all (too long didn't read), is a transplant option is with a hep C infected organ that can be cured. There are 2 medicines that should be approved this summer that could make it that I don't need a transplant. I'm hurting. And I also feel somewhat free because of that pain. And I love and appreciate my sibling beyond words I can type. Thank you for reading if you made it this far. I'll try and do more frequent updates.