Monday, July 17, 2017

Don't Target Me Because I Am Chronically Ill: MLM Madness

Ok, so here we go. I've been thinking about writing a post on this subject for a while but for fear of starting a debate, I've put it off. But, I've had enough... I have had enough of being targeted my MLM consultants because I am chronically ill. 

Those of you who don't know, an MLM is a multi-level marketing company (like Avon, Origami Owl, Thirty-One, It Works etc). People can become consultants, designers, whatever they call it, for these companies and sell their product. These people can eventually work their way up the line and increase their pay based upon how much product they sell and how many people sign on to sell under them. One of the many ways MLM consultants market their product is via social media. MLMs are GREAT ways for adults looking to increase their income, stay at home moms, college students, and retirees to make a steady income.  I was once an MLM seller, I sold Origami Owl (O2), so I know this from both sides. I LOVED selling O2 and I also loved the extra income I got from it. I say all of this to say, I have nothing wrong with MLMs and what their goal is. Here is where I have a problem... 

As you probably know, I live with Type One Diabetes, an autoimmune condition that is EXHAUSTING and has NO CURE. I'll say that again, it has NO CURE. That being said, here is an example of a message I received from someone who I do not even know. 

"Hi Ashlyn! I saw a friend share a post about your diabetes and wanted to share something with you that could help you come off of medication. I sell (insert product name here) and it has proven to help people better manage their diabetes, lower their blood glucose levels, and come off of medications. Let me know if you would like to give this a try." 

Here is where my blood begins to boil. As I said before, Type One Diabetes has NO cure. I am insulin dependent, for life, end of story. No special pill, special drink, or essential oils will give me the ability to come off of insulin. So, when I receive messages offering a "cure", I have a hard time being kind in my response. Usually I try my hardest to kindly educate the person on T1D, tell them that currently I am doing well and managing well, and I always say that I will research whatever it is that they sell to see if it will be of any benefit to me. I give them the benefit of the doubt and assume that they just don't understand that my type of diabetes cannot be reversed and that insulin is really the only treatment. But, here is where they step over the line.... 

The person quoted above decided to argue with me about diabetes and how it can be managed with their product. I received messages almost daily until I finally had to block this person. There are others who have accepted that their product wasn't a cure, but still insisted that it would help me.... they are assuming I need help managing my diabetes, yet they haven't spent a second in my shoes and when I tell them I am managing just fine, they continue to insist that I "need" their help. 

The messages offering a cure are what make me most angry. I have many, many well meaning friends who message me to tell me about the product they sell, let me know it may help diabetes, and leave it at that. When I tell them I will research it and tell them I am doing well on my current treatment protocol, they wish me well, don't argue, and still love me the same, even if I don't buy their product. To those friends, thank you. Thank you for understanding and respecting my choices and thank you for taking the time to let me educate you on what T1D really is. 

Here is what it boils down to, I am not a walking diabetes disaster. I do not have a sign on me that says "Help me with my diabetes", and I do not appreciate being a target. I get messages at least twice a week from people selling a number of different products all because they know I'm diabetic. I feel like I've got a big target on my back and that people think I'll be an easy person to make money off of. 

I have to end by saying, I appreciate what all of you MLM consultants do. You're selling a product that has helped you and that you believe in to help have better income for yourself and your families. Many of you (and you know who you are), mean well when you contact me. You are genuinely concerned and want to offer help to me and if I'm not interested, you don't mind... and to those people, I say thank you. Just keep one thing in mind, if someone says they aren't interested. That means they aren't interested today and probably won't be tomorrow, next week, or next month either. Don't harass someone who isn't interested. Those of us living with diseases like T1D have enough stress as it is. I poke my fingers 10 times a day, dose insulin 6-8 times per day, count every carb I eat, and lose a lot of sleep... that alone is enough stress. We fight hard every day to keep ourselves alive. 

Keep selling whatever it is that you sell, keep providing for your families, and even keep posting your stories and testimonies on Facebook... just be sensitive when it comes to those of us who live with chronic illness. We don't mind your concern but we do mind your daily, never ending persistence to get us to "buy in". Trust me, the day there really is a cure, I'll be buying into it. 

-Ashlyn 


 

Tuesday, July 11, 2017

CWD FFL 2017: The Week I Love Diabetes

One week out of the year, I LOVE diabetes. This sounds crazy, right? Who could ever love diabetes? Well, anyone who has ever attended the Children With Diabetes Friends for Life international conference will tell you that it is the one week out of the year that a sense of normalcy exists for those of us living with T1D. Last week I attended my second conference and when I tell you it just keeps getting better, I'm not lying. 
July 5- Departure Day!
Everyone has already arrived and registered, I just had to show up to the party a little bit late. Due to school being my first priority, I was only able to afford to take one day off of class. July 5, after sitting through a lecture, a lab, a practical exam, and a written exam, I was finally on my way to Orlando to join my friends at Coronado Springs. All day, my phone was blowing up with two of my best friends for life, Morgan and Michelle, texting and calling me to get constant updates on my location. We could not WAIT to see each other. I arrived very late and as I was getting out of the car, Morgan came out of no where and attacked me with hugs. We didn't want to let go. We've been speaking via FaceTime for a whole year now, it felt surreal to be able to hug again. I made it just-in-time for the Crystal Bowersox concert and I got to reunite with Michelle and I got to meet Gretchen, who by the end of the week would also become one of my best friends. Morgan was rooming with us, and that first night we didn't get in bed till around 1 am because we couldn't stop talking and laughing. I now had on my green bracelet (for those with Diabetes) and mom had her orange one (for those who love someone with Diabetes) we were ready to tackle the week. 
July 6- Let the sessions begin! 
Today began with a huge breakfast buffet and The Richard Rubin Opening Keynote: Diabetes at 212° by Dr Desmond Schatz. This keynote was amazing, upsetting, thought provoking, and interesting all rolled into one and it got us all pumped up for the next few days ahead. On this day, I attended the Sugar Surfing workshop with Dr Stephan Ponder. This is a session I was very excited about. I have read Dr Ponder's book twice and he has literally been instrumental in keeping me healthy with T1D. I enjoyed listening to Dr Ponder expand on the diabetes management tips outlined in his book and getting to talk with him personally about my journey and how much he has helped me. Mom got to attend sessions about the cost of insulin and advocacy. 
Much of today was also spent exploring the exhibit hall and reuniting with other FFLs from last year like the Fickling family, Logan and Samantha Merwin, the Paul family, the list goes on... And of course with the exhibit hall comes lots of free stuff and lots of time spent at the Pump Peelz stand with my friends Scott and Emily, picking out new swag for my devices. 
Next came the scary part of the trip... retinal screening. As you probably know, eye problems can be a serious complication of diabetes. CWD so generously provides all people with T1D a retinal screening to assess the eyes and how healthy they are. Thankfully, aside from some sun damage, my eyes are perfect. 
The day ended with the banquet, where we got to hear RaeLynn perform, eat amazing food, watch amazing people accept this year's awards, and watch DocuDiabetes III. Here is where my 5 seconds of fame comes in... my video I made for PTA school (about diabetes) was chosen as a top 5 for DocuDiabetes.
July 7- Adulting sessions galore... 
Today's sessions on my agenda were all about being an adult with T1D and entering the world of "adulting". I learned all about insurance and my rights as a person with Type 1 Diabetes. I got to hear one of my fave FFLs Leigh speak and she always teaches me so so much about how to navigate college and the workforce as a person with T1D. I also attended a session about the flaws in the hemoglobin A1C test and though mom and Morgan were utterly bored, the health sciences student in me thought it was super interesting. 
Tonight was all about adults and young adults. I attended the young adults dinner with lots of people my age and we went to the Tandem adults night where they had food, karaoke, drinks, and games. 
July 8- DISNEY DAY! 
Mom, Gretchen, Morgan, and I all decided to go to Animal Kingdom for the day and we had a blast. There is something pretty neat about sitting down on a curb at Disney and all sharing glucose tabs to treat low blood sugar... makes low blood sugar feel a little more "normal". We enjoyed seeing the new World of Pandora too! 
Now came the hard part... goodbyes started. Morgan was leaving at 4 am, so we spent our evening at the Family Night and running around the hotel so she could say her goodbyes. But, as sad as goodbyes are, this was one of my favorite nights. Gretchen came to our room for a couple of hours and we sat on the bed and laughed, cried, and shared stories. It is SO NICE to be able to talk openly about diabetes and it's struggles with people who actually care and "get it". I was not ready to leave this safety net. 
July 9- Farewell FFL 
Today is the day we dread. Saying goodbye. I cried a good bit of the morning hugging all of my people and saying "see ya next year". We all were getting ready to head back home and home for us is all over the country. Ohio, Canada, California, Florida, North Carolina. This part stinks. 
We enjoyed an amazing breakfast with Mickey, Minnie, Goofy, and Pluto and we shared some final memories. FFL 2017 was officially over. 

As you can tell by my long winded post, FFL was once again more than I could have ever asked for. Once again, I felt so normal for a week. I was surrounded by green and orange bracelets. Someone always had insulin if needed. Someone always had test strips. Someone always had glucose tabs. Someone always had a shoulder to cry on. And EVERYONE genuinely cared about the battle we are all fighting against this devastating disease. 
Thank you CWD for making this possible. 
My green bracelet is off. My ID badge is hung up. My program book is on the shelf... but the memories are close in my heart and my FFLs are just a FaceTime call away. 
Let the countdown to next year begin. 

-Ashlyn

Oh and PS- Thanks to my amazing instructors Kelli and Melinda for allowing me to take a day off of school and rearranging your schedules for me to test early so that I could have this amazing experience. I hope you both understand how much last week meant to me after reading this. 
 

Friday, May 5, 2017

Would You Kill Me for a Tax-cut?

Before I get into the meat of this issue, I want you to imagine something... 
You are 19 years old and a sophomore in college with your whole life ahead of you. Suddenly, you begin feeling ill. You are thirsty all of the time, you feel lethargic and can barely make it through 5 hours of classes without a nap in your car, something is not right and you know it. You finally go to the doctor after you've lost 10 pounds and the doctor tells you that you have Type 1 Diabetes (T1D). The doctor tells you that T1D is an autoimmune condition that has no cure and teaches you what you must do to keep yourself alive. After learning about carb counting, insulin injections, blood sugar testing, and life threatening high and low blood sugar, you're sent to the pharmacy to pick up your life saving tools. 
For the next 3 months supply, you are given 900 blood glucose test strips, 900 lancets, a blood glucose meter, 6 insulin pens, 50 ketone test strips, and 540 needles to use for insulin injections. All of these supplies would have been upwards of $5,000 without good insurance coverage and even with insurance, your first trip to the pharmacy cost you $400. 

Now that I've painted a picture for you, let me put a face to this story. This is me, Ashlyn, and this is what a pre-existing condition looks like. The story above is my story. 

As you probably know, yesterday the House of Representatives made the decision to repeal and replace the Affordable Care Act, also known as Obama Care. Obama Care has been a major topic of debate for Americans over recent years. With the ACA, many American's saw their insurance premiums skyrocket, which made the Affordable Care Act not so affordable. With the ACA did come some positives such as protection for those with pre-existing conditions and the ability for an adult under the age of 27 to stay on their parents' health insurance. At the beginning of his campaign, President Trump began pushing the issue of the ACA and saying that should he be elected, it would be one of the first things on his agenda. President Trump also insured that with this repeal, he would protect those with pre-existing conditions. Yesterday, however, the House voted against protecting those with pre-existing conditions. If you aren't someone with a pre-existing condition or don't have a child with one, you probably dont understand how serious this is. Let me tell you what this could do to people like me. 
Insurance companies will be able to decide if they want to cover me or not. I will have to search high and low for an insurance company who will cover me and when I finally find one, they will charge me 3x what they charge the average patient because they know I will be a guaranteed expense. I will then be paying $3000+ per month just for insurance premiums, which will make many of my daily meds and technologies unaffordable. I may have to limit how many test strips I can afford, which will then limit how many times per day I can test my blood sugar. The less I am able to test my blood sugar, the greater my risk for life threatening high and low blood sugars and long-term complications due to poorly managed diabetes. Meanwhile, some celebrate because they got a tax cut. But those who celebrate don't know that their tax cut could kill me or the other millions of American's like me living with a pre-existing condition. Would YOU kill ME for a tax-cut? 
It all boils down to this, republican or democrat, it is important for you to understand how much this decision could impact me if the senate votes yes in the next few weeks. PLEASE, do your research and contact your senator to let them know that this is NOT okay. I am actually registered republican, but that does not mean I have to stand for this and neither do you. While I believe some MAJOR changes need to be made with our current healthcare system (the ACA) in the US, I do not believe that changes need to be made at the expense of people who have no control of the cards they were dealt. Life with diseases like T1D is hard enough as it is, please don't make it any harder on us. 

Please contact your senator, my life depends on it. 


-Ashlyn 
 

Wednesday, January 4, 2017

Tethered and Uncomfortable or Tubeless and Miserable: Decisions and Diabetes

Well, long time... no blog. I could make up a ton of excuses as to why I've let my writing slip by the wayside, but to sum it up... life has been hectic. In August, I moved to PCB and I began the Physical Therapist Assistant program (see my last blog). But, that's not why I am here, this blog is all about life with T1D... so here goes the most recent saga. 
Diabetes wise, I've had a pretty tough time lately. As I've talked about before, I began using the OmniPod insulin management system in April 2016 and I was absolutely loving it, but, things have changed. When I moved out on my own and began school, I began having a lot of issues with random high blood glucose numbers, skin reactions, and pod failures. I began to get so frustrated with the system that had helped me for so many months and I wondered why my body was suddenly rejecting it. 
So, I began looking into my other options. I decided that I wanted to move forward and try to get the T slim insulin pump, an insulin pump that has tubing but is the most advanced pump technology wise. The only roadblock, insurance. Insurance companies only allow people with diabetes to get a new insulin pump every four years, I have only had my current pump for about eight months. So, we submitted a letter of medical necessity and photos of my blistered skin  with the request for a new pump… Insurance denied it. I was devastated. In the midst of waiting to hear from insurance, I got a severely infected pump site that spread to all of the open areas on my skin from reactions to the pump. I spent 2 weeks receiving antibiotic injections and extremely strong oral antibiotics. I was beyond frustrated and ready to rip the pods off and go back to doing MDI (multiple daily injections). What do I do now? Insurance obviously believes that it is not medically necessary for me to have a new pump, so what now? My doctor did a peer to peer with the insurance company, and they still denied. Next step was an appeal... an appeal for this pump that I desperatly wanted and felt like I needed. This is where things get interesting... 
The beginning of my infection saga... 
 
Thanks to some wonderful people, I was able to get a T slim pump to trial temporarily. This would help me decide if I wanted to go forward with fighting insurance (which is often fighting a losing battle). I got the pump put on and I was so excited for no failures, no rash, no occlusions. The excitement was short lived. After 24 hours attached to a pump with tubing for the first time, I was aggravated and I felt defeated. Frankly, I hated being attached to something and I hated feeling like I had to worry about this device. Is it going to fall out of my pocket? Am I going to accidentally hit buttons and give myself a lethal dose of insulin? (Yes, I know, safety features... but these were my thoughts after being on a tubeless pump for so long). And then, I ripped my site out on a door knob. I was done with diabetes, done with pumps, just... done. I kept thinking about how ridiculous it is that I'm having to make these decisions. I kept wondering why we do not have a cure with all of the technology and brilliant minds available. I kept wondering what I was going to do next in my diabetes management. So, through the holidays, I put my OmniPod back on and thought on it... 
My first day "tethered"
A few days ago, I decided to give the T slim another chance… I have a little bit more time to decide if we want to appeal the insurance company's decision, so I figured I needed to get the pump another chance before I totally ditch the idea. I have went into it with a better attitude this time and I've kept the pump attached for almost a week. So far, I am very pleased with my blood sugars, I am pleased with no pump failures, and I am loving how easy the T slim is to use. But, I cannot get over having something attached to my waist and having tubing hanging everywhere. Getting dressed in the morning is a hassle and I always forget to pull the stinking thing off when I go to use the restroom… So, what now? I don't know what is next, but I just had to write this to get it all off my chest… For those of you who do not live with type one diabetes or do not have a child living with it, this is life. It is frustrating, it is relentless, and it never gives me a break. I have to make decisions that no 21-year-old should have to make and sometimes these decisions are life altering or life-threatening. For those of my T1D, pumping friends out there I hope you can give me some words of advice or encouragement with this situation. I have about a month to decide what I'm going to do, so I will be doing a lot of researching and praying. Until I make his decision, I will keep on fighting this monster T1D and keep on enjoying school and life. I refuse to let T1D determine my quality of life.