I have to vent today, since I’ve been kind of “holding it in” this past week…
You know how your car starts to get all kinds of little problems after you’ve owned it for say, ten years? The horn starts wavering, the windshield wipers start turning on by themselves, the brakes need to be replaced… everything starts to break down almost magically at that 10-year mark, all at once! Suddenly, you’re shelling out thousands of dollars to get everything fixed and staying up at night wondering why you didn’t just buy a new car! Well, I feel like that’s what’s happened with my body. Twenty years after having diabetes, and all of a sudden, when it rains, it pours! Every single complication that could seem to happen is happening, all at the same time, only I don’t have the option of running out and buying a new body to replace it. A new kidney hopefully, but that’s it.
I just learned that I now have diabetic retinopathy – with is basically damage in my eyes. It is the #1 cause of blindness in America right now, and I’ll be honest next to kidney failure, it was the #1 thing I was most afraid of happening to me with my diabetes! Lucky me, now I have both! What angers me the most, is that I was seeing a specific eye doctor for the sole purpose of catching this early, if detected, and he COMPLETELY MISSED IT!!! Even after talking to him about my symptoms, he gave me a clean bill of health! I had to make an appt with another doctor to get a second opinion and she said I had a moderate level – which is a more advanced level than “mild” and should have been caught by my first doctor. Once again, I have more damage done that could have been prevented but wasn’t based on misinformation given me by the professional s who are paid and TRAINED to know this stuff!! It’s made me LIVID! I have had several days to let this soak in and calm down, but I’m absolutely going to bring this up to my first doctor and tell him I am not going to return. Not only that, since my endocrinologist was the one who referred him, I’m going to inform him not to refer any more of his diabetic patients to this guy.
What sucks even further, is that I had to go to the retina specialist today, and after four-hours of running tests, they told me they can do laser to repair a few things, but then threw me the words I dread hearing, especially when it comes to my eyesight… “there is nothing I can do for this.” I’m sorry, but that doesn’t work for me. That is NOT an answer I’m willing to accept. I’ve been doing my research to see if what they say is true, and it looks like they are correct. Unfortunately, the only way they can help me is if it gets much, much worse. At the stage I’m at, they say there is nothing to correct! How frustrating is that? Instead of catching it early and doing something to prevent it from getting worse, I have to just wait for my vision to almost disappear before they can even begin to help me! Again… this does not seem right to me, so I’m going to try and find another doctor to get yet, another opinion.
I know this blog was supposed to be about my process to the kidney transplant, but it has become a huge hodge-podge gathering of all this BS that has come out of one main problem – diabetes. I hate it. I hate it with all my heart! It’s such a misleading and sneaky parasite that just sits in your body silently for years, allowing you to think that life is good and nothing is wrong with you…until it’s ready to explode and then all hell busts loose. I don’t voice this often, but my life has been turned completely upside down in the last few years for this very reason. I try to stay as positive as I can, but this has sucked almost every ounce of my hope and optimism out of me. It’s absolutely the most difficult thing I’ve ever had to deal with, emotionally, more than physically ironically. My future does not look as amazing as I once believed it would, but despite this big gray cloud that is constantly looming, I WILL NOT let this break me. I may become a one-legged, blind old lady with 80 cats and another dialysis machine, but I refuse to let this thing kill me off! It may have taken my grandmother and my aunt, but it’s met one stubborn red-head that is not ready to let go, and I’m going to keep fighting every single obstacle it throws in my way!
Damn, that was dramatic. So I forgot to cue the patriotic music and flags flying behind my head while saying all that, but I’m pretty sure it somehow showed up in your imagination while you read it. 😉 I’ve got to interject something more positive to this post… and how appropriately timed is this? This month is Diabetes Awares month! WEEEEEE!!! The Juvenile Diabetes Research Foundation (JDRF) has launched a campaign where you can receive texts from a sports celebrity (who has Type 1 Diabetes) and see what it’s like to have diabetes for one day. I’m very curious to see how his experience compares to mine, so I’m going to sign up! If you’re interested, please click here to get more info! Also, here’s an ad/video that was created for a brand new blood glucose monitor that attaches to your cel phone! It’s actually pretty clever, and brings humor to a painful process we have to put up with multiple times a day. 🙂 Bravo Dario! I don’t have your product yet, but I’m already a fan!
Update on transplant: I forgot to mention, the liver specialist who is on the transplant committee has looked over the results from my most recent MRI, and has decided, once again, that they are “inconclusive”. The transplant coordinator has informed me that a possible “next step” might be to have a biopsy done on my liver. She was supposed to meet with the committee this past Friday to find out what they wanted to do, but I haven’t heard back from them yet. I’m afraid of inserting a joke about multiple organs going bad in the process of trying to fix just one, for fear that, at this point, it might come true! =: O
Things I’m thankful for today:
1. Tomorrow is my mom’s birthday! Happy birthday Mom! I can’t wait to celebrate! Love you!
2. We have awesome neighbors. 🙂 Met a bunch of them at our Halloween block party, and you’d think it was one big family! So cool…
3. I was able to catch up with my friend Anna, whom I haven’t seen in a few years, and meet her new husband! I had a great time at lunch… thanks for letting me know ya’ll were in town!