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.
So sorry to hear that you need to deal with all of this at such a young age. Sending positive thoughts and prayers your way.
I “get” you, man. (hey, you said trivial comments are okay!)
Yes, Anthony, I’ve been following, and wondering how your doing, so thanks for the update. I really enjoy the way you write, and I like the way you think, and I like “listening” to you.
Hi Anthony 
I’ve also been following you(not stalking). It’s a Darn shame that so many have gone through such frustrating and worst complications such as yourself. Thankfully you are not dying! I’ve been saying for years that Diabetes should be classified as a Real disability. Maybe People(including the Governments) would seriously take notice that it is a Life-threatening disease/condition then and do much more about looking for a Cure instead of arguing about it. I mean, I used to pass out on the shoulder of the road on my way home from school for lunch because of a low at about age 7 or 8 and up. Is that a thing a “normal” Child would do? Usually I walked with Friends but there were those times when I walked alone close to a mile. What was Life worth back then? What’s Life worth nowadays?
I had PDR in my left eye after 22 years of Diabetes. Thankfully the laser therapy went Good for me. Just some peripheral damage and a bit of acuity(?) loss. I was 25. Thankfully I can see quite Good today because we had/have mostly Good Specialists and more than not, up-to-date equipment. Unfortunately, Drs. are lacking here now for many reasons. I sure hope that your treatments go as Well.
Wonderful to hear that you have a Great Team of Drs. Sooo important. Good job on getting your numbers in a Better area. Believe me…no one has Perfect control of their Diabetes. Too many variables. Some much Better though than others. Just honestly continue to do the Best that you can. We are only Human after all.
Only the Best I Wish, Hope and Pray for you Anthony until you are brought back as much as possible to Better health. Thank you for the update . Take Care! :).
I’m so sorry to hear about your troubles. Sometimes, we don’t appreciate how having type 2 diabetes can have such an impact. There is no such thing as the “bad kind of diabetes,” they are all “bad.” I wish you had been able to avoid what has happened, but as you note, that is water over the bridge and we can only affect the path in front of us. I would like to encourage you to remember that many complications may be halted and even reversed. With good blood sugar control and proper treatment you do have a chance to greatly affect the outcomes. I beleive that you can heal from kidney decline, peripheral neuropathy, edema and other complications. You’ve been dealt a “few” cards, there is still lots of play left on the table. What really will matters is our attitude in how we play out the rest of the game. Stay optimistic, stay strong and play wisely.
Hi Anthony! I am sorry to hear about your complications and trials. I Think you are facing these issues head on and as upbeat as possible and for that I admire you. I will be thinking of you and wishing for your speedy recovery.
Thank you for sharing that Anthony. We can’t change the past, but we can impact the future. You might not be able to cure your diabetes or reverse complications, but you can influence how well you manage them in the future. I wish you the best and that you will stay strong through your journey. We are here for you!
Katie
Best wishes to you and strength sent your way.
I completely understand how you feel. It is all too scary to realize that your vision is fading. You can’t do so many things the way you used to. I just had a follow up to my second laser. Things are so much better, but I still have issues. With the PN and the vision problems it has become almost impossible to do so many simple things. Open a package, fill out a form or write my name. I still can’t tie my shoes although I have managed that a couple times lately.
I have no idea how long I have had D. I was diagnosed last October, but I realize now That I have had symptoms of PN for over 5 years. I am doing everything I can to manage my BG and reverse all that is possible of my complications. And, everything is better than it was one year ago, but NOTHING is like it should be. I would say that on average I am at about 70% overall. Hopefully I can get into the 90% range in the next couple years. It is not hopeless and we are not helpless. But, it can definately be overwhelming and daunting.
Typing with one finger and wishing you great success!
I read Randy Pausch’s book “The Last Lecture”, co-written with Jeff Zaslow. It was inspiring, and if you can get a copy, it’s worth it. For those who don’t know, Dr. Pausch was diagnosed with pancreatic cancer and only months to live, and had to face leaving behind a beloved wife and 3 young children who probably won’t remember him. So he gave his Last Lecture at Carnegie Mellon University and then talked extensively with Mr. Zaslow, who put his words into writing. He had a lot to say, and said it was for his children. But he really said it for all of us.
Natalie, I have watched it many times, but not read the book.
Here’s the link: http://youtu.be/ji5_MqicxSo
Gina, thanks SO much for the link. I really wanted to watch that, so I did, at 3 AM, when I couldn’t sleep. The book covers much the same territory as the lecture, but it’s great to have both heard and read about it. Different modalities, better learning!
Everyone else, please take the time to watch and listen to the lecture. It’s an hour and 15 minutes, but it will NOT be time wasted!
Anthony,
I remember meeting you back when we first moved to the Bay Area, along with Renee. You have always struck me (and your post confirms it) as a smart and determined type of guy. You are not allowing diabetes to bring you or your spirits down and for that I respect you and admire you, my friend.
Keep up the good fight and keep us posted about things after Sept. 1, man.
BIG HUG!!
I will keep you in my thoughts and prayers. Thank you for sharing your story. Not easy to read, but grateful that you are able to keep up the fight.
Anthony, thank you for this post. I will definitely keep you in my prayers as you travel this path. And thank you too for your p. S. – important advice.