If you have questions after reading all this then please post them in comments so I can address them in further writings. I have repeated all of my health related problems so many times that I’m sure I have left things out or need to clarify. I am willing to answer just about anything you can throw at me and nothing really embarrasses me anymore, so don’t hesitate to ask. Besides I’m sure a lot of people are wondering the same things you are. I will post more detailed updates and recollections of times in later writings. This entry is a preface to the “blog” itself and a quick summary of my time in Boston. If you would rather not comment then send your question to my email address: firstname.lastname@example.org
It’s time I come out of my shell. I get a lot of phone calls and emails from people wanting to know what’s going on with me. I normally hate the idea of writing a personal “blog,” as there is just far too much first person rambling. Now though I think writing will be a necessity for me for two big reasons:
1. It will help curious friends and family to know what I’m doing, why I’m not calling and why I’m not out and about.
2. I need emotional therapy. My current physical state has allowed me to delve into darker thoughts than I thought I could imagine; The word depression doesn’t seem adequate sometimes. And it’s definitely time I finally say the “d”-word in public. My wife and my dogs keep me sane, but when I am alone I can go off the deep in end in my mind.
This blog will get information out there, give me a chance to heal, and create an opportunity to vent. Most likely it will help relieve some of the burden on Jess as well as me. I rarely leave the house in my state, and when Jess goes out she faces a barrage of Tony-questions. It’s not easy to answer, “How’s Tony doing?” It’s incredibly complicated.
It is rare for Jess or me to not tear up when giving someone an update. Our frustration can be unbearable at times. It’s been long enough now that it’s feeling like we are being robbed of time. It can feel like our best years are being stolen from us and we are helpless about it. No matter how many times she or I give people updates, it never gets easier. In fact because I’ve been going downhill for such a significant time now, updates get worse and worse. We don’t like to answer Tony questions and at the same time we know that our friends and family need to know what’s up.
I plan to update this site as often as possible but most likely that will not be everyday. Though they may happen sometimes, please don’t expect a funny or witty update everyday. It may be difficult for me to write about all these dark feelings and it may be just as difficult for you to read. I am feeling sad and helpless and I’m sure this will come out in my writing. I’m hoping the honesty is therapeutic.
I do hope though that my thoughts and expressions become much more optimistic very soon. There are some good things happening so that is an improvement. I would expect that we might see a rise in positivity as my writings progress but it might take a while.
Before reading about Boston, you will understand a lot more if you read GVHD – My Condition.