Author's Note: The following was originally posted to my Facebook account on August 18. I am sharing this for everyone who may be following me here at tudiabetes.org (with some additional information that is up-to-date).
I was composing a personal note tonight to some friends here and thought I should write all of you about my health. I want to be straight forward here and tell everyone what has been happening to me in this long journey since February. To say things have been easy would be a bold-faced lie. They haven't. It was very scary to know just how sick I had been. It has been even scarier to realize what 22 years of having a chronic disease can do to you.
If you were to look at me, you would not know I was a diabetic. We don't show diabetes very well, at least not in the beginning. The more controlled the disease, the less and less we'll show the signs. Well that wasn't me. I showed the signs but just chose not to "reveal" them to everyone. A few very close friends have known of my trial.
On the positive side, in the last six months, with a great team of doctors and specialists, I have been able to reverse some key numbers about my diabetes and have gotten the disease back under some level of control. Not perfect, but much better. Despite having two episodes of chest pains which were bothersome enough to seek medical attention, the scans have shown that structurally there is no damage to my heart. All good things. But as I said 22 years have taken their toll in other ways.
I have had peripheral edema now for more than a year and a half. It has only been in the last six months that we've tied it to a decline in my kidney functions. Now, I am not at the point yet of failure. But it bears constant testing to view how my kidneys are functioning. The edema affects my gait, in how much I can walk and for that matter climb stairs or even sit down for various lengths of time. Even lying down at night in bed sometimes can be painful.
The problems also led to me being diagnosed with proliferative diabetic retinopathy. Simply put, there are tiny blood vessels in the macula that are growing where they shouldn't be. I had thought the changes in my vision were due to a change in how high my blood sugars were. Well come to find that was partially true. But the problems have gotten to a point where I have stopped driving, where watching TV is sometimes difficult, and even typing here on my laptop is an adventure. Just try to read a newspaper, a book, or for that matter all of the forms you have to sign when you are at the hospital. While I am not blind, legally, my vision is demised to a certain point. Having retinopathy means having laser treatments. I had three so far, two focal or minor ones, and now were doing major ones. I probably have at least two to three more treatments ahead of me. The bottom line, there is no cure for this. But we continue to work at it to keep these vessels at bay.
On top of all of these problems I have certain other complications which I will keep private. Those closest to me know what I am going through. I'll just say it's truly personal and not something a 44 year-old male should be going through. (I will be having surgery to correct this problem on September 1; updates will follow.)
I have to face this "disability" head on. I use quotes because I don't feel I am disabled. But clinically I am. It has been difficult to come to terms with this. I had to let some good friends know today that I will not be coming back to work because of all of this. But knowing my family history - both sides - makes me appreciate and understand that a) I am not the only one and b) I will not be alone in this fight. Now the next few weeks will be tough on me, physically and emotionally. Certain milestones are being met that will affect everything that goes on going forward. They are not easy milestones. But ones I cannot change. Nor ones I want to go back on.
Now to ease everyone's mind, I am not dead or dying. I just can sometimes seem dramatic here. Good education from the Sisters back in school I reckon. But seriously, I have had to have adult conversations with myself about my health, my life, and where I want to go with it. These are conversations I should have had years ago, but only doing it now when all seems like a big pig pile and you are caught with the football underneath it. I am, to put it in a hip sense, "keeping it real dog." (Now who'd thought I'd say that...fo shizzle. LOL)
My thought to you, my friends and followers, is continue to send me your vibes, your comments, your prayers. They are welcome no matter how trivial you may think they are. My promise back to all of you is that I will continue to write these notes now probably on a more regular basis. Call it journaling but in the "new" social medium.
P.S.: As a side note, I encourage all of you who have yourself or know someone who is a diabetic to do three things. One, keep an eye on those with the disease - including yourself. Don't act like a cop about it, but let them know you are concerned and you love them. Advocate! Advocate! Advocate! It is your right and their right to receiving QUALITY health care. Two, there are a number of great Web sites about diabetes out there for those who have the disease, those who are caretakers, and I'll gladly share them with you. But do the research and be up on what is happening. And finally, the late Randy Pausch (professor and author of The Last Lecture) wrote "(W)e cannot change the cards we are dealt, just how we play the hand." Face what is given and deal only with the path you choose, accept the consequences, and fight when you have to.
Thank you my friends.