Hi, I am Joshua Schmidt. I am a Hemophiliac in Phoenix. I want to help you make your life better.
Having Hemophilia can be many different things for many people. Some of us don’t have to worry about much because we have good coverage and bleeds are not much of an issue. While some of us are still struggling to get the needs we have met, and sometimes you just can’t do it on your own. Whatever your situation with Hemophilia is, there is a great way to to build the quality of your own life and that is Blood Brotherhood!
When I moved to Arizona in 2010, I was in bad shape. My ankles were about to fuse themselves together before the doctor could. My wrists and forearms still need attention that I can’t give them until I get my legs are taken care of. Life was hard and the last thing I wanted was to deal with was more Hemophilia, or anything related to it. I did not want to think about doctor visits, shots, or stretching. I was also very alone. I had my wonderful family to help get me through it all, but they still don’t understand what I really go through. Nobody does but us. Sometimes we want to be left alone because we don’t want others to see us when we are down, yet we want somebody to help us through the pain we are experiencing.
Last spring was an eye opening experience for me. I was going out of town and needed some shots. I called to place my order and was told I could not because some laws were changing. I went to instant panic mode. The reason I was in such horrible shape when I came to Arizona was because I had no access to shots before I moved here. For 6 years if I had a bleed, I just bled for days or weeks. I still had to work as many of you do, so there was no resting. Being instantly reminded of that time in my life after that phone call, I realized it was my own fault I could not get shots. I had done nothing to stay in touch with my Doctors and nothing to stay informed about Hemophilia related issues. Laws regarding health care get passed every month and I had never even shown the slightest interest, even though many of them directly affect Hemophilia and those with it. I just sat around while my fate was up to everybody but me. I thought “Self, do you really want to ask a Lawmaker or an Insurance CEO if you can have your shots?” That was the first and last time I had a thought like that.
I set up a meeting with the fine folks at The Arizona Hemophilia Association. Luckily (for all of us) they were already 2 steps ahead of me. Most of the contents of that meeting I will save for another rant. The reason I am writing is because at that meeting Jessica and Cindy encouraged me to join Blood Brothers. I did and I am glad I did! As I said before, I am not excited about Hemophilia, there just does not seem to be a ton of good that can come from it. I was wrong!
One of the most liberating days of my life was when I showed up to my first Annual Meeting. I looked around and saw guys limping around like I do! I saw people with ACE wraps on! It was not exciting to see all of these people who are hurt, it was comforting to know that I was no longer alone. The things that my family can’t relate to, these people could. I just have to say “Hip Bleed” and you can instantly recall the pain of your last hip bleed, what it stopped you from doing, and how long it kept you down. You and I could be the most different people, but we both know how it feels to have a bleed. We both know how it feels to have to want to do an activity so badly, but know we can’t or we’ll get hurt. That is hard to deal with but at the end of the day having somebody who knows what that is like means more than I can put words to.
I just can’t emphasize enough the weight Blood Brothers as well as The Arizona Hemophilia Association has lifted from me. And it can you too. Getting to know these amazing and funny characters that call themselves The Blood Brothers has been an experience that I missed out on my whole life and never knew it. Hemophilia is obviously not normal, but when you are around the Blood Brothers, you are normal. Whether you are having a bleed at the time or have not had a bleed in years, we are still the same and we all need somebody who knows. Now I can’t wait for Blood Brothers Events! I have made so many great friends there. We get to do things that even the “Normal” people don’t get to do normally. More than that is the companionship that comes from interacting with another human who has to spend this life in a boat that looks very similar to the one you sail around in. The Hemo-Boat.
In closing, I would just like to ask you to come and meet me. Come and meet my friends who have Hemophilia. Come and do something that will mean more to you than you could ever imagine. Come and get to know this great bunch of guys at The Blood Brothers! We are there for you!