Tuesday, November 20, 2012
When you live with more than one chronic condition, sometimes things can snowball and you end up buried beneath an avalanche of issues, doctor’s visits, self-care, and tasks you meant to do but didn’t. Sadly, one of those things for me was Diabetes Blessings Week hosted by my friend Mike Durbin over at My Diabetic Heart.
It’s not that Mike had specifically asked me to participate (it’s an open invitation) or that I’d promised I would. It’s that I was still a bit too shy to participate last year, but really wanted to. Having a bit more free time this year due to a company-wide furlough this week, it should have been easy to fit into my lack of schedule. Then life happened.
Here it is Tuesday. Mike casually mentions it during a conversation and it slowly dawns on me that I’ve let another thing slip through my fingers. Yet another chance to advocate that I let pass me by. Nearly.
So with determination (and possibly a bit of stubbornness), I pause the craft video I’m watching on YouTube, set my craft supplies aside, and get Pandora going. Time to see what this crazy brain of mine can crank out when I tell it to instead of just when it wants to.
What do I come up with? No clue, but we’re about to find out together. So buckle your seatbelts because this is bound to be one crazy ride. Providing of course that Pandora doesn’t throw yet ANOTHER Taylor Swift song into my mix and try to derail my train of thought.
So I’m supposed to write about blessings, specifically those related to diabetes. I’ll be honest, my first thought is “WTFructose? Diabetes sucks!” and it does. But just like nothing is all good, nothing is all bad either. I dig deeper and see a faint light shining in the distance. A bright spot amongst the endless numbers for blood glucose levels, carb counts, A1c’s, units of insulin, and the never ending cost of what feels like the million tools it takes just to keep me alive.
As I move towards that glimmer of something that feels like it’s made of hope, love, and support, I feel myself growing lighter and lighter. The fears, doubts, and insecurities that crowd me begin to fall to the ground like the changing leaves of autumn. My steps are buoyed by anticipation and my pace quickens.
I enter the outer reaches of the glow and instantly feel warmed from the inside out. My nerve endings begin to tingle in a way that makes me think I’ve begun to glow on my own. My smile widens as I take what feels like my first unencumbered breath in years. Moving closer I feel it envelope me like a loving embrace and I know I’ve found that silver lining I was looking for.
You might be wondering what I’ve found and I will be glad to tell you. What I’ve found is support, love, understanding, and empowerment. We affectionately refer to it as the DOC. The Diabetes Online Community. A group of diabetics of all types, caretakers of diabetics, and loved ones of diabetics. Basically, people who get it. Where you can talk about diabetes without explaining WHAT diabetes really is first.
We are patients, children, mothers, fathers, grandparents, aunts, uncles, friends, siblings, newbies, veterans, advocates, lurkers, bloggers, tweeters, non-profit workers, family and friends, but mostly we are just people, who happen to be connected by diabetes. We are the light that makes the darkness retreat, taking with it the fear and doubt. We are the hand held out to strangers and friends who need comfort. We are the human connection that keeps all of us strong and moving forward. We are the voice of advocacy and the cry for change that keeps diabetes from becoming a truly invisible disease. We are love, caring, understanding, support, & kindness. We are the DOC.
And that is a LOT to be thankful for. Thanks for coming along. I hope you enjoyed the ride.
Thursday, October 11, 2012
I cannot even begin to express how wonderful this book is. And not just because David Emprimo is my bestest friend. He is a VERY talented author with a wonderful imagination. Do yourself a favor & go buy this ebook. I promise you won’t regret it. :)
Monday, September 24, 2012
Today is Diabetes Art Day & this is my submission. The background is something I digitally "painted" a while back. The blue circle is the symbol for Diabetes. I painted all of the bottles & stuff with a black paint pen then took a picture of them. My co-worker who is a Photoshop Goddess helped me merge the two (Thanks again, Sasha Whitney-Hayes!!!) & then I added the words.
Last year was my first time to participate & it was an amazing experience. So amazing that it actually gave me the courage to go to my first diabetes meet-up. Thanks, Lee Ann Thill!!! Your creativity is contagious! :)
Want to know more about Diabetes Art Day or see more submissions? http://www.diabetesartday.com/
Wednesday, August 22, 2012
i am your once in a lifetime
your one last, best chance
at true happiness
and you are mine
but if you walk out that door
i won’t be here when you get back
you can’t make the rules
then break them to suit you
this is a dangerous game
you are playing with our hearts
by the time you realize it
you’ll be alone and unhappy
and i’ll have moved on
getting over you won’t be easy
knowing it was never my fault
will dull the edges of my broken heart
maybe even let me live again
but love is too dangerous a game
for me to ever play again
Tuesday, July 03, 2012
If you follow me on Facebook, Twitter, or Tumblr then you know that Friday I was at the hospital for another blood transfusion. My seventh since December and I have to say it is really getting old.
Don't get me wrong. I am very grateful to have this option open to me. Without the transfusions, who knows if I'd even be alive today. My hematologist doesn't think I would be. He's a not just a good doctor. He's a great doctor, so I believe him. Still, it's not a thought I like to entertain for long.
The transfusions themselves are relatively easy & mostly pain free. I go to the hospital the day before to pre-register and have blood drawn for a type & cross-type. After this many transfusions, I've developed several anti-bodies in my blood. The blood bank has to match those anti-bodies carefully or I could have a serious reaction to the blood. I'm O+, but usually get O- blood because the anti-bodies I have are more common in O- blood.
The next morning I report to hospital registration and someone from the Day Surgery unit comes to get me. That's where I spend the day because getting two units is an all-day endeavor. And lately I visit the Wound Care Clinic first for my ankle wound before going to Day Surgery.
The nurses get me settled, we go over the medications I've taken in the last week, and they take my vital signs. Then the fun really begins because it's time to insert the IV needle. Unfortunately the needle for a blood transfusion is larger because blood is thicker than IV fluid. I won't sugar coat it. This part hurts. They give me a local anesthetic, but that can only do so much. We've discovered in the midst of all this that I have a lot of valves in my veins and that just adds to the pain.
For the most part, once the needle is in & the IV is hooked up to it, the pain goes away. Some locations will ache for a while after. Some will ache the whole time. All of them will bruise pretty badly a few days after the transfusion. One of the hazards of being pale and having a low platelet count.
Once the IV is set, the nurse will go get the first unit of blood. It will be given slowly over three hours. For the first hour, the nurse will take my blood pressure & temperature every 15 minutes to insure they catch an adverse reaction right away. After we're sure there are no reactions, I usually get breakfast and start watching television.
Instead of a hospital bed, they fix me up in a big recliner. And I spend my day watching HGTV and Food Network. They feed me lunch too. The nurses are super sweet and they spoil me. Also, heated blankets FTW!!! Man do I love those because I'm usually cold these days.
After the first unit is done, they unhook me from the IV so they can change all the tubing. I get a shot of Lasix to avoid any fluid collecting and I get up to move around a little. Mostly I just go to the bathroom, rejoicing in being untethered. Then the nurse comes back with the second unit of blood and we start the procedure again. Except for the needle part. That stays put to minimize my discomfort.
When the second unit is done, the nurse begins unhooking everything and removing the needle. Low platelets sometimes makes this a tricky or messy task. At this point, she usually watches a bit of television with me while she puts pressure on the IV site for about 10 minutes. Then I have to hang around for another round of blood pressure and temperature checks. Usually a half hour to an hour.
On a good day I'm out of there around four. On a not so good day it is sometimes after six. Those are really long days. Made longer by the fact that I will wake up several times during the night with very painful leg cramps. The best we can figure it's a combination of sitting in pretty much the same position all day and the sodium and potassium I lose because of the diuretic. I'm prone to leg cramps anyway.
The next day I'm usually pretty tired. It's amazing how worn out you can get from sitting all day long. Usually I'm at work the next day. I've missed so much work this year that I push myself to get back the very next day. This does not make my hematologist happy, but I hate missing work.
This time I had the weekend to recover, but it sure made the weekend seem short. Here's hoping this one lasts for a couple months at least. I'm really tired of doing this whole transfusion song & dance. Anyone care to cut in?
Saturday, June 16, 2012
Twenty-one years ago yesterday it was a hot and rainy Saturday. I was sitting on Dr. H's exam table, kicking my feet out of habit and because my inner child is about twelve. I was there because of an out of control wound on the outside of my right ankle. What I couldn't figure out was why Dr. H had drawn so much blood. Plus I was starving since he'd insisted I be fasting. Not to mention I was so thirsty that I had cotton mouth.
Dr. H had looked briefly at my ankle, but he'd been far more interested in asking me a series of strange questions. He'd even checked the whites of my eyes. I figured after years of being our family doctor, insanity had finally claimed him. I mean who cares what I'd been eating when I'd actually lost over 30 lbs. That is what the doctor who said I had Type 2 Diabetes ten months ago told me to do. Actually, that was the only thing he told me to do.
By the time Dr. H returned, I was starting to get a bit irritated. In fact, I'd been irritated a lot lately and that was not like me at all. I hadn't really felt like myself for a while now. Sometimes it was like a stranger was living in my body. One that was quite a bit meaner and angrier than I'd ever been in my life.
I shook my head to clear it and focused on what Dr. H was saying. Did he just say something about high blood sugar? "Doc, I told you that endocrinologist told me last August that I had non-insulin-dependent diabetes. He told me to lose weight and I'd be fine. I've lost more than 30 lbs. so that has to have helped, right?"
When he took my hand, I knew I wasn't going to like what he was about to say. In one of those strange moments of clarity I sometimes get, I knew that his next words were going to drastically change my life. I was pretty sure I wasn't going to be happy with this new road I'd have to take. Mostly, I was starting to get scared.
"Honey, you don't have non-insulin-dependent diabetes," he said and the deep breath he took to steady himself doused the small flicker of hope that sprang to life at his words. "You have insulin-dependent diabetes and probably have since last summer. You lost all that weight because your body is starving to death. No matter what you eat or how much you eat, your body can't use it because it needs insulin to turn it into fuel. You don't make any insulin anymore."
Now I was just confused. How could I have insulin-dependent diabetes? You get that when you're a kid and I was about to turn 23. So he had to be wrong and I said as much. Dr. H was a great doctor, but no one can know everything.
He assured me that not only was it possible, but it was true. Then he reached behind him and grabbed what I would soon learn was a blood glucose monitor. He pricked my finger, applied blood to the strip, inserted it into the machine, and we watched it count down sixty seconds. When the 386 popped up, I had no idea what it meant but by the look on his face, I knew it wasn't the winning number.
"When did you last eat?" he asked me in his serious doctor voice. I had no idea why it was important but I knew better than to argue with him. "I had some cereal before I went to bed last night," I answered then quickly added, "It was before midnight, I swear." Dr. H actually smiled, but it didn't last long.
"Normally, I'd put you in the hospital until we can get a handle on your blood sugars, but I know you don't have insurance. And I know from your family history that your grandmother's brother had a reaction to insulin the first time he took it so what I need you to do is to come back first thing Monday morning and plan to stay all day. We'll teach you to give yourself shots and be able to watch you for reactions to the insulin."
He paused to make eye contact with me. "Promise me you'll be back here Monday morning. This is not just important. This is life and death. You understand that, right?"
"Doc, I don't think I can give myself shots every day. You know how much I hate needles," I said with a shudder. I'd been afraid of needles for as long as I could remember. And with that thought, the tears began to fall.
Dr. H reached behind him and grabbed a tissue without ever losing eye contact. "I know, honey, but if you don't take insulin shots you are going to die. In the not too distant future you will slip into a coma and not wake up again. It is that serious. And we will do everything we can to make it as easy and painless as we can."
"Can Mommy come with me on Monday?" I asked, not the least bit ashamed that right then I needed my Mommy more than anything. He nodded his head. "Okay, I'll be here Monday morning. I promise. What do I do until then? And what about my ankle?"
"I'm getting to that," he said and I notice he looked visibly relieved by my promise. "Until Monday I want you to get lots of rest and don't do anything strenuous at all. Drink lots and lots of water. Be prepared because you'll be going to the bathroom often, but just keep drinking water. Try to stay away from anything starchy or sweet. Stick to meats and vegetables. And if at any time you feel nauseous or your back starts to hurt like you've got a kidney infection, then go straight to the ER. Don't stop to call me, just go. And as soon as you get there tell them you have insulin-dependent diabetes but haven't had any insulin. They will know what to do."
The tears kept coming and fear was starting really set in. I'm pretty sure I looked like a deer caught in headlights. "Don't worry, kiddo. You're not going to do this alone. You'll have lots of help along the way. When you get home today, tell your mom to call me and I'll go over it with her." He put a business card in my hand. "Give her this card. He's a great doctor and he'll be expecting your call. He'll work you in Monday as soon as we're done here. He'll get that ankle fixed up the best he can. I'm not going to lie to you, the next few months are going to be hard and probably frightening for you, but we'll all work together to make sure you get through it."
"I'm going to put a new bandage on that ankle. I'm going to do the best I can with it and we'll just leave it alone until you see Dr. Y. Stop doing all that other stuff the dermatologist had you doing."
"Yes, sir," was about all I could manage. I'd reached my limit for the day. I couldn't take in one more thing and Dr. H knew it. He helped me off the table and helped me gather my stuff. It was still raining, but he walked me out to my car and wouldn't let me drive off until I'd put my seatbelt on. I don't remember the drive home at all. I just remember suddenly being in our driveway and noticing that it had stopped raining.
I've written about this day before. Not in this much detail, but I thought today was a good day for the details. I went into that first week of my new diabetes battle without a single clue of just how hard and frightening it would get. There were a lot of numbers tossed around that summer. My blood sugar that Monday was 412, but I'd made it through the weekend without needing to go to the ER. My favorite of Dr. H's nurses was tasked with teaching me how to give myself insulin shots. She told me most people learn on an orange, but she said we were going to go a different route. She loaded a syringe with saline, rolled up her sleeve, and offered me her arm.
I took a deep breath, shook my head, and gave myself my first shot. When I didn't pass out, I handed her the syringe and told her to give me some insulin so we could do this thing for real. When I'd done it again with insulin and still hadn't passed out, we both laughed so loud that Dr. H came to see what we were up to. I think the whole office lined up to hug me.
We would have to stay there for a few hours. Time I spent napping on the couch in Dr. H's office. Every so often one of the nurses would come take my blood pressure and temperature, but there was no sign of a reaction. Eventually, the appropriate prescriptions were written and my Mommy would tuck them into my ever-growing bag of supplies and instructions. Dr. H took us to lunch and then it was time to pick up the new prescriptions.
Later that day, I'd find out that Dr. Y was a plastic and reconstructive surgeon. A fact that would make me panic so much that I actually hyperventilated in his waiting room. Dr. Y was definitely a straight-shooter and he didn't mince words. He told me the last thing in the world he wanted to do was surgery, but if it would save my life he wouldn't hesitate to insist that it was necessary if the time ever came. He told me that the worst case scenario was that I'd lose my right leg from the knee down. He made sure I understood that not only did we have to do exactly what he said about the wound, but I had to work really hard to get my blood sugars much lower so my body could do its job.
Dr. H started me on insulin and a pill for my underactive thyroid. I'd taken the same pill from the age of 11 to 16, but this time when I'd start taking it I wouldn't stop. Not that we knew that at the time. By the end of the summer, my wound was healing nicely and surgery wasn't going to be necessary. My blood sugars weren't great but they were much better and we were working on making them better. I still didn't have insurance so my parents were paying for the medicine I couldn't afford which was pretty much all of it. And I began to make the rounds to all the specialists you're supposed to see when you have diabetes.
We found a new endocrinologist and I went to a few appointments with him, but stopped after the third or fourth visit. He was completely convinced that I'd be lucky to live another ten years and that I'd never live to see 40. So I went back to Dr. H who told me the guy was nuts and I'd live just as long as anyone else, I'd just have to take extra-special care of myself. Since I'll be 44 in about 9 days, I think Dr. H knew what he was talking about.
I'd seen optometrists since I was seven and got my first pair of glasses, but now I needed to see an ophthalmologist. The one we found was about as cheerful as the endocrinologist. He was sure I'd be blind by the time I was 30. I didn't bother to make a second appointment.
So here I am 21 years later. Still alive, obviously. Still wearing glasses, but not blind. I've just had over a year of some of the best blood sugar levels I've ever had. I've had a lot of different doctors during those years. Some as positive and supportive as Dr. H, but some haven't been. I try to keep a hold of the good ones and just leave those negative ones behind as I move forward.
2012 has brought more than its fair share of medical problems. Liver and spleen issues. A bone marrow biopsy and six blood transfusions. An endoscopy, colonoscopy, and a pill endoscopy gave my gastro film of my digestive tract from entrance to exit. Literally. Throw in a couple of CT scans and you have my year so far. Oh and let's not forget the wound on the same damn ankle from 21 years ago. I'm pretty sure they'll be naming a wing of Baylor Carrollton Hospital after me and my insurance company.
I take a lot more pills now than I did 21 years ago. I use two completely different insulins than I did and instead of syringes I use pens. I have a lot fewer highs, but also more lows. I know my body much better than I did. I can manage to eat ice cream with barely a spike in my blood sugar, but I can still only have orange juice when I'm low because even just a few swallows will shoot my blood sugar up 30 or 40 points.
When I was diagnosed, the only diabetic I knew was my grandmother's older brother. Now I know probably hundreds of them. Including my Mommy and my stepmom who both have Type 2 diabetes. I have diabetic friends and family all across the world. One day I hope to meet some of them face to face, but until then the internet keeps us closer than I ever thought possible.
It's funny. Years ago if you'd ask me about places I'd like to see in this world I'd have listed London, Paris, Dublin, Venice, Madrid, Rome, & Tokyo. Now that list is a bit different. Those places are still on it, but just a bit further down because places like Los Angeles, New York, Oregon City, Las Vegas, Indianapolis, & Kansas City have taken over the top of the list. Unless I can convince my loved ones in those cities that Texas is a great place for a meet up. Failing that, there just might be some traveling in my future. Maybe this road isn't so bad after all.
Wednesday, May 16, 2012
I saw the hematologist yesterday. My hemoglobin levels aren't great, but seem to be holding pretty steady for me. We've decided to not mess with them. Two weeks ago it was 9.6 & yesterday it was 9.2. So no iron or blood. But I did have a sore on my ankle that was hurting pretty badly so he sent me to a wound care clinic.
I'll admit it had me worried. Same dang spot where I had the ulcers 20 years ago. And with a lot less muscle mass because of that, I knew things could go bad pretty quickly.
The plan was that I would call this morning to the wound care clinic at the hospital where I've been having my transfusions. With the hope of getting in tomorrow. My ankle had other plans. It kept me up most of the night with severe pain. This morning I was so tired that I know I sounded drunk when I called my boss. Sweet, sweet man just took it all in stride.
So I laid back down & called the clinic a couple hours later when they opened. They could see me at 2pm so I laid back down again. Just like the wonderful people in day surgery, the wound care clinic staff took VERY good care of me. Seriously, I think they put something in the water at this hospital because EVERYONE in this place is so nice & happy.
I got registered, filled out my 7 pages of paperwork, & they put me in a treatment room. My nurse, Sona, talked to me about what was going to happen & took pics of not just my wound, but of me. She said that way everyone on the staff will know me by sight. I hate having my picture taken, but I thought that was pretty cool. I also heard her in the hallway later giving lessons on how to say my name. :D
The doc came in & I immediately liked him. He was funny, sweet, & had a very soft touch. Once he cleaned it up, he said it wasn't as bad as it looked. No visible sign of infection but just in case, he wanted me to keep taking the antibiotics that the hematologist gave me. He decided that the intermittent swelling from my liver was keeping it from healing. So I have to wear a compression sock from my knee to my toes. Not very fashionable, but I'll live.
He also discovered that the extreme pain was caused by a couple of exposed nerves in the wound. Even with it numbed, I nearly came off the table twice while he was cleaning the wound. So he gave me pain meds. Nothing major, just codeine with the promise that I will tell him if that doesn't work well enough to let me rest so he can give me something stronger.
I'll go once a week until it's healed. With the option of coming in more days a week if it doesn't seem to be healing fast enough.
So that's about it. I'm limping, but I'll live. :)
Tuesday, March 27, 2012
”We want to help get it right,” states diabetes advocacy group
Tuesday, March 27, 2012 (BERKELEY, CA) – Did you know there are more than five different types of diabetes? If your knowledge of diabetes is defined by what you hear and see on the news or in movies then you probably don't. Diabetes Advocates, a nonprofit program made up of influential members of the diabetes community has launched a media outreach campaign, designed to assist the media on all things diabetes.
Kelly Kunik, a member of Diabetes Advocates, stated: “Today is Diabetes Alert Day in the US and we are trying to stress to all media sources that more due diligence is required on everyone’s part when reporting on diabetes. We want to help all sources ‘get it right’ but also stress the importance of explaining the differences among ‘all things’ diabetes.”
Despite the fact that media outlets are reporting on diabetes more than ever, the condition is still widely misrepresented and portrayed as only one disease, when in actuality, diabetes is made up of several different diseases (type 1, type 1.5 LADA, and type 2 being the most predominantly confused). By emailing the organization at firstname.lastname@example.org, reporters can quickly fact check, get suggestions and have a real-time conversation with the Diabetes Advocates to ensure the accuracy of their articles. The Diabetes Advocates can also serve as sources for reporters.
With representation from the Screen Actors Guild (SAG), American Federation of Television and Radio Artists (AFTRA) and Actor’s Equity (AEA) within the organization, the Diabetes Advocates can also serve as information sources to entertainment outlets. Entertainment outlets looking for information on diabetes can email the group as well.
“Our goal is to stop being reactive and start being proactive,” said Kunik. “When a story with incorrect information is published, the damage is done. By making ourselves available to media and entertainment outlets, we are seeking to be part of a solution.”
ABOUT DIABETES ADVOCATES
Thursday, March 15, 2012
I stopped at a place called My Fit Foods after several co-workers raved about their food. They do freshly prepared, packaged meals. Kind of like frozen entrees with out the frozen part. They are a bit expensive, but I was curious. And I know I need to eat better.
What I had forgotten was the near panic I have to fight when I buy a packaged meal. I have this fear that it won't be enough food. That I'll still be hungry when I'm done or that I'll need more protein or something. Then I start thinking that if I do, there is something wrong with me because normal people don't need more. Even worse is how I will sometimes overeat out of that fear. Something I've never shared with anyone. Ever.
Why am I sharing now? Damned if I know, but I felt like I should. So there it is.
BTW, the My Fit Foods meal was very tasty, but probably too pricey for me to buy on a regular basis. Which is sad because it was VERY healthy. I have health insurance that helps pay for the meds that I need to be healthy, but what do you do when eating healthy is so much more expensive than the alternative that you can't afford it?
But I guess maybe that's a topic for another post.