Fears about my transition and future

[Simon]

I'm not an optimist or a pessimist...I'm a realist. For the most part my life is going exceptionally well right now. There is a part of me that feels as though I am in a race against the clock when it comes to my transition. Right now it's weighing heavily on my mind. Just a fear that I can't seem to shake.

Long story short, I have a rare genetic cancer gene defect. My body produces tumors in my spinal cord, brain, kidneys, and eyes (I don't talk about it because it upsets me but I'm currently going blind in my left eye). The other thing I am dealing with is pancreatic cysts that could cause me to become diabetic. If I am diabetic it can be controlled with meds and diet but I worry how it will affect my healing in the future. I've had multiple surgeries and will have more in the future. The plus side is right now all of my tumors are stable. I am now under the first "medical break" I've had since 2007. I don't have to go for anymore scans until late Summer/early Fall next year.

Since I now have this break I've enrolled in College and am looking for a part time job ( the part time job is just so I can afford to get myself a car and good health insurance). To many it wouldn't seem like much of an accomplishment but to me it is. I just strive to have a sense of normalcy. Even though there is a good potential that this normalcy won't last long...at least I'll have it while I can.

This is where my fear sets in as far as my transition. First you have to understand that I've been binding over a decade. I didn't have a good family and things with them fell apart when I came out as trans. I left home with an 8th grade education and just a few hundred dollars in my pocket. I've struggled my whole life. Now things are going great and I'm slowly getting the money I need for top surgery but it's not coming fast enough. It's not a trial of patience...it's a race again my disease.

My greatest fear is my illness flaring up before I can get my chest done. My urologist team is writing me a letter of recommendation so I can have my surgery. I have emailed with Dr. G and he (surprisingly) knows about my genetic condition and has agreed to perform my surgery. I'm just really stressed that my tumors will grow in the next year to the point where I need another major surgery. I just want to be comfortable. It's hard when you're sliced halfway open for a kidney surgery but the first thing you can think to do is get out of bed asap to put on a binder so you don't feel like a freak.

It's hard and I'm scared to go through it again. If you've read this far thanks. Not sure what I expect in reply about this because people tend to not know how to respond to these things. I just really needed to get it off my chest (kinda funny saying that considering the topic). Just something I don't normally discuss.

[Beth Andrea]

Wow, sounds like you have a lot on your plate...

*hugs*

...hope you can get the surgery you need soon, to help with the other things...

[DriftingCrow]

That sucks Simon, I hope you remain stable medically. If I had a bunch of money, I'd pay for your top surgery, unfortunately I can barely afford anything right now.

*bear hug*

[Simon]

Thanks for the support.

I don't talk about these things with people in my life because I don't like to make them worry. It stresses my gf out when I talk about it and that's not fair because she does everything she can for us.

All I can really do is keep my fingers crossed that everything stays stable at least long enough for me to get it done. I think what really made me start worrying about it so much was when I had my hysto. I had a terrible breakdown after surgery due to dysphoria, coming off of anesthesia, and pain meds. Trying to avoid that again.

[Adam (birkin)]

I've seen you reference your condition in a few past posts, and I too hope you can get your chest surgery done soon so that it's one less thing to worry about. I generally try not to speak about others' experiences, but my ex has a chronic medical condition, and it was really only through being with her that I got an understanding of just how many aspects of your life it can affect. The sense of normalcy is something that she often speaks about as well so I understand why the part-time job and college enrollment is so important.

Although I'm sure a lot of people say it, and I know some people find it annoying (so I hope you take this the right way), honestly, I have a lot of respect for you for how you seem to be keeping your head up. I know you don't have much other option besides "keep going", but despite having a lot of things happen that could make you bitter, you seem like a genuinely nice guy with a wonderful outlook. There really is something to be said for that. Actually, I was just telling Keaira that I think you seem like a great guy either last night or the night before that.

[Arch]

You need a damned sponsor. I don't know how much the Jim Collins Foundation is willing to cover, but it's worth applying for. How much have you saved so far?

[Sarah Louise]

You will make it Simon, you have shown a lot of strength already. 

[Simon]

despite having a lot of things happen that could make you bitter, you seem like a genuinely nice guy with a wonderful outlook. There really is something to be said for that. Actually, I was just telling Keaira that I think you seem like a great guy either last night or the night before that.

Thank you, that means a lot. I just think everything happens for a reason. That reason is usually beyond our understanding but there is a lesson to be learned in the process.

I've never been bitter but there was a few years that I was really depressed about my situation. I remember my first time going alone to Maryland for a kidney surgery. Nobody could afford to take off work to go with me, so I did what needed to be done. I was sitting outside the afternoon before the surgery at the Hospital just in pieces. I had made sure to sit in an area where not many people would walk past but from the children's lodge a kid was walking up. I wiped my eyes really quick and cleared my throat just waiting for him to pass by so I could continue my pity party. That little boy who couldn't have been more than 8 or 9 walked up smiling...his little head was bald from rounds of chemo. I thought he was going to walk past me but he sat beside me, placed his hand over mine, smiled, and said "It's going to be ok". At that moment I swore to myself that I would never feel sorry for myself again and I haven't. I get down about things...that's human nature but I try to remedy situations and press through them instead of pitying myself for being in the situation.

You need a damned sponsor. I don't know how much the Jim Collins Foundation is willing to cover, but it's worth applying for. How much have you saved so far?

Right now I have a little over $1100...so if I go to Dr. G (which is likely since he knows about my disease) that is enough to stay at New Beginnings for a week. Now working on saving for travel (I'm thinking Amtrak. It's 24 hours each way but it's cheap) and the surgery itself. Of course if an emergency happens the money goes towards getting me to Maryland at my specialists but hopefully my DNA will cooperate with me for awhile.

Funny you mentioned that Foundation. I am currently writing my letter to them. I think I have a decent shot at them helping a little...guess I'll see. 

[kyh]

Funny you mentioned that Foundation. I am currently writing my letter to them. I think I have a decent shot at them helping a little...guess I'll see. 

I hope you hear back from them, Simon. And I hope everything will work itself out in time.

[DriftingCrow]

you should start a Chipin or something like that Simon. I'd actually contribute if you had one.

[Simon]

you should start a Chipin or something like that Simon. I'd actually contribute if you had one.

I'm kinda weird about things like that (call it foolish pride). I don't mind asking for help from an organization set up for that purpose but asking for money from individuals is something I personally would never do. I'm not saying people shouldn't do that if it's the absolutely only way they will be able to transition.

That was very kind of you to say though and I appreciate the thought. 

[DriftingCrow]

Would you be opposed to doing raffles? Then it's not like you're asking money for nothing, like buy 3 sizes of binders or safety razors, whoever contributes $5 and specifies their size will be entered into the drawing. Like, if you do end of starting a youtube channel, I can see that working well. I think more people would donate that way too, people like prizes (hehe I really only donate to NPR when they're doing the fund drives, you can get nice stuff sometimes, I should really be a sustainer since I listen to them every day).

[King Malachite]

I hate that you have to go through all of that.  You really are a strong person and it helps put my situation a little bit more in perspective.

I don't mind asking for help from an organization set up for that purpose

CK Life's scholarship cycle is about to open up again.  Maybe it's something you would be interested in.

http://cklife.org/Surgery-Scholarship-Fund.php

[Simon]

I hate that you have to go through all of that.  You really are a strong person and it helps put my situation a little bit more in perspective.

CK Life's scholarship cycle is about to open up again.  Maybe it's something you would be interested in.

http://cklife.org/Surgery-Scholarship-Fund.php

Do know that I don't think my struggle is any more valid or difficult than anyone else's struggles. We all have different experiences, that's all.

Thanks for the info about that organization. I'll definitely look into it.