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Thursday, December 11, 2014

When life hands you lemons...

My sister recently found out that she may have Celiac Disease.

As directed, she has completely cut gluten from her diet. While more and more gluten-free options are becoming available both in restaurants and grocery stores, it's still a diagnosis that comes with its own set of challenges. I've watched her as she's adjusted to this major lifestyle change. I've watched her grapple with finding something she can eat on a menu, watched her reluctantly turn down food at an event, watched her patiently pace the aisles looking for the gluten-free options or alternatives to her favorite recipes. It hasn't been easy, but she has risen to the challenge with tremendous strength, discipline, and optimism.

I truly admire how she has stayed so positive despite having to give up or modify so many of her favorite foods. How she's taken on the added responsibility of checking every food label and having the discipline to turn down what she knows she can't have. How she's gone from having the freedom and ease of choosing essentially any food to having much more limited options. Through all this, she's faced this change courageously, head on, and hasn't let it get her down.

I admire what she's had to do even more because I've been so reluctant to make my own dietary changes even though I know it would help me. While I know that she doesn't really have a choice if she wants to avoid doing damage to her intestines, she still doesn't complain. I know I should eat less carbs, I know I should cut back on sugar. I know it would help tremendously to stabilize my blood sugars, to lessen my insulin intake. I know it would benefit my overall health, but I haven't made those changes to what I eat.

I look at what she's doing and I find it inspiring and motivating. It hasn't been easy for her, but she's doing it and using it as an opportunity to grow. As she said to me, "I think of it as a challenge, as a way to stay healthy, learn new foods I might not be used to eating, and definitely learn to cook better with the foods I can eat." In many ways she's given me hope that when I finally decide to make (less significant) changes, that I too can do it. And with so many people with both type 1 diabetes and celiacs successfully balancing both, I know that when I'm ready, I will have plenty of resources and inspiration within the DOC too.

No one asks for these types of challenges. Whether it's balancing blood sugars on a daily basis or completely eliminating a protein composite from your diet, life is full of obstacles. It's how you approach them that makes the difference.

I'm lucky to have such motivating, positive, and strong role models in my life. People who when handed lemons, they make amazing gluten-free lemon bars with almond crust!

Wednesday, November 19, 2014

Feeling low

I buried my head in my pillow, the soft fabric muffling my frustrated screams. I hate it. I hate it, I hate it, I hate it.

I was low. AGAIN. It seems to be the trend lately. My efforts to keep my blood sugars from spiking has resulted in more lows. Lows that seem unexpected because I really thought everything I was doing seemed right. Lows that have been incredibly disruptive, making me stop whatever activity I'm doing. Stubborn lows, that a couple glucose tablets don't seem to solve. Lows that wake me up at night, lows that won't go away, lows that leave me feeling awful. And upset. And frustrated.

I don't want to treat the low. I'm tired of stuffing my face with sugar, not because I want it, but because I need it. I'm tired of working so hard in my workouts, only to have to later eat everything I burned off or sit out because I can't continue with a low. I'm especially tired of eating when I'm not hungry and feeling awful while I wait for my blood sugar to stabilize.

I can see the extra weight creeping on, and I hate it. I hate that I don't have a choice when I'm low. I hate that those forced extra 80 calories of my fruit snacks add up. I hate that insulin makes it harder to lose weight. I hate that these lows are often then leading to later highs, sending me on a blood sugar roller coaster. I hate not feeling my best.

I'll talk to my doctor, I'll make adjustments. We'll work to get rid of these lows. But for now I just want to scream into my pillow and wish for the day when all of this will disappear. When sugar will just be sugar and not a substance that often feels like its controlling my life.

Some days, weeks, months are better than others. I'll make it through this rut, I know I will, but today, right now, I really hate my diabetes.


Wednesday, November 12, 2014

The sickness slow down

I love being busy. I didn't think I would actually. Mostly because I also love my alone time and just relaxing. But I really like being active and well, doing things. Slowly my days, weeks, and months became filled with activities. Some days it is a boot camp or fitness class after work, other days it's a committee meeting, volunteer opportunity, happy hour or dinner, or social event. It didn't hit me how busy I was becoming until my friend asked if we could hang out and see a movie and after consulting my calendar, the next open day was 3 weeks away.

As winter approaches, things have started to slow down, but I'm still go, go, go. Don't get me wrong, I still relax. Most of my week nights end with a quiet dinner and a couple hours of TV. But each day after work seems to have some additional event or activity. Rarely do I find that I'm truly bored. In fact, I'm probably guilty of trying to do too much, of wanting to do it all.

That is until I got sick.

I'm pretty fortunate to say that I don't get many colds. In fact, I think it's been a few years since I got one bad enough to miss work or class or whatever I had going on. But this cold hit me pretty hard. It started in my head, moved to my chest and then a week later, moved to my stomach. I missed work. Harder for me, was missing my workouts. Mentally I was ready to be back working out, but physically my body wasn't ready. Every day I would start the day by saying, I think today I can workout, but after wheezing after walking up a hill, I knew that my body needed to rest. Truly rest.

So for a week, I did nothing. I didn't work out. I didn't go out. I rested and relaxed. And it was hard and weird for me. But I came to some important realizations during my forced downtime.

1.  You can't do everything, and that's okay. It's okay to say "no" to plans. There will be more opportunities in the future, and life goes on even if you aren't at a particular event. FOMO (fear of missing out) can't dictate your life. You will miss out. It's inevitable. But it's okay. Life goes on and you'll be fine.

2. It's good to have a schedule and stick to it, but sometimes schedules have to be broken. Especially when it comes to fitness. Monday is tabata, Tuesday is bootcamp, Wednesday is an off day or a morning half hour workout, Thursday is kenpo, Friday is rest. The weekend is some sort of active pursuit, a bike ride, tennis, a run. But you can't be obsessive. It's about being healthy, so when you're sick, it's healthy to rest and let your body recover. You aren't being lazy. You're being responsible.

3. Being sick can mess with your diabetes. Your numbers can go crazy, you can feel weird and not know why, you can need your inhaler and feel like you have low blood sugar, but really be fine. And it can be frustrating when blood sugars soar despite your best efforts. But sometimes things happen that are out of your control and you can't beat yourself up about it. You just have to do your best moving forward.

No one likes being sick. And it's a hard adjustment when you're used to being so busy and high energy. But I guess it was my body's way of making me slow down. Am I still going to fill my week with plans? Yes. But going forward, I'm going to listen to my body, prioritize my health, and know that no one can do everything, and you know what, that's perfectly okay.



Tuesday, October 21, 2014

Mission: Secure Lost Meters

I sat in the car with that satiated, content feeling you get after a particularly satisfying meal. However, I was feeling extra thirsty, which was odd since the beer and multiple glasses of water should have been sufficient to quench my thirst. Tuning into my body, I realized it was the symptoms of a high blood sugar that I was experiencing.

I started digging around in my purse, looking for my CGM. I felt around in the endless abyss that is my work bag, but nothing was feeling familiar. My searching became more frantic. "Where is it?!" I thought. "It should be here!" Okay, well if I couldn't find my CGM, I would at least test my finger so I could tell how high I was.

My hand went back into my bag, but again came up empty. Gigi AND my glucose monitor, both gone?! How could this be?? I started to panic slightly. I felt lost. Rarely am I without both my meters, no way to tell exactly how high I am and how much insulin to give. I could guess, but if I was way off, the consequences could be serious.

"I don't know where my meters are, either of them. They should be here! I need them. What if I lost them?" Eyes wide, I dumped everything out of my purse, searching the surrounding area. But the search was futile.

"Relax," said the voice of reason sitting next to me. "I'm sure they're not lost. They probably fell out in your car."

Yes. Yes, that would make sense. They're probably in my car. But I don't remember taking them out of my bag. But maybe they fell out without me noticing. I'm sure they're there. Where else could they be?

"Yeah, you're probably right."

The 10 minute drive back to my car seemed to drag on forever. I tried to enjoy the music and the company, but my mind was focusing on only one thought: finding my meters.

We arrived back at my car. I wanted to run and fling the door open, but I kept my composure. Of course they'd be there, what was the rush?

I opened the passenger door and picked up the coat on the seat. They weren't there, either of them. I looked on the floor, in the back seat, between the seats, nothing. Defeated, my mind pictured Gigi abandoned on the side of the road. Who would find her? How would she be returned to me? Was she gone forever??

"I'm going to go check my office. Maybe I left them there."

It wouldn't have been the first time that I would have left Gigi under a pile of papers, out of sight and out of mind. We loaded into my car and drove across town on a mission to return my meters home safely. We pulled up to my darkened office, it was 10:30 at night and the only light was from the cleaning people finishing up for the evening. I walked inside, making my way through the darkness to my office. I lifted the papers scattered across my desk. Gigi! My beautiful CGM! I was so relieved. But where was my other glucose meter? I looked in the drawers, on the floor, and all around. It wasn't anywhere.

I returned to the car, perplexed. It's happened before that I've forgotten my glucose meter at home on my nightstand, where it sits over night. And it's happened before when I've left my CGM at the office. But both in the same day?? I suppose it was possible, I needed to believe it was.

At this point I was feeling mad. I was mad at myself for being so forgetful. I was mad that my diabetes was being so disruptive, and in this case, I was to blame. Rather than being able to relax and enjoy my evening, I instead spent it in an anxious, sour mood driving across town. I was feeling bad for the guy I was with who insisted on accompanying me and for inconveniencing him as well.

"I'm sorry, I know this isn't how we imagined spending the rest of the evening. Thank you for coming with me."

"You don't need to apologize. We got to go on an adventure together. I know you'll find the other meter too."

I drove home, ran up the stairs, and went straight to my bedroom. Sitting on my nightstand where I left it was my other meter. Relieved, I alerted my mission comrade that it had been secured and that all was well (except for my blood sugar).

Looking back, I'm still upset that I managed to leave both meters separately in different places, but that's not what I'm going to choose to focus on. Instead, it was the attitude of the person that I was with that has stuck with me.

There are lots of times when my diabetes has ruined or altered plans that I had. Maybe it was a low that made me stop what I was doing, maybe it was forgetting supplies and having to drive back and get them, maybe it was running around trying to find a battery because my pump had died, or maybe it was just having to make different arrangements to accommodate my schedule or needs. It can be annoying, frustrating, and upsetting. But as I was reminded, you can't let it ruin your plans, or your mood. Every cloud has a silver lining, a forgotten meter is a chance to go on an impromptu adventure. I'm just glad this mission ends with a smile.


Friday, September 26, 2014

The Big Bang Theory Bust

I love the show, The Big Bang Theory- it's one of my favorite. In fact, last year I even dressed as Amy Farrah Fowler for Halloween. But, for the first time ever I cringed while watching a recent episode. Penny was sitting in an interview to be a pharmaceutical rep. While talking about her previous job experience as a server at the Cheesecake Factory, she says that she once convinced a group of bigger customers to order cheesecake, ones that even had an insulin pump. Then the interviewer says to her, "I have an insulin pump."

In my experience, it's very rare that a television show accurately depicts diabetes, Type 1 or Type 2. Maybe the statement was just a way to communicate that the customers had diabetes. But to me, Penny's statement seemed to imply that if you have an insulin pump, your diabetes must be really bad. But that's not the only assumption that one could make from that statement. Someone could assume that having an insulin pump means that you must not be doing a good job taking care of yourself, that you're to blame for your present state, that an insulin pump is something you get when all else has failed.

I was watching the show with someone who knows that I have an insulin pump, but not a ton more. We haven't had a lot of discussions about my diabetes yet and what it means to live with Type 1. We haven't talked about my pump and what it does and what my life was like before I had it. Rather than taking the opportunity to educate, I instead cringed on the inside, hoping that my friend was not silently making assumptions about me and my diabetes based on that statement. In that moment, I hated that show for making me feel self-conscious or ashamed even for those few seconds.

Because I'm not ashamed. Having an insulin pump is nothing to be ashamed about. I love my pump. It has given me tremendous freedom, control, and flexibility that I didn't have before.

My insulin pump is the tool that helps me keep my blood sugar under tighter control. I didn't go on it because my control was poor, I went on it so that I could have even better control. My pump is what helps me take care of myself and be healthy, not a symbol of the opposite.

Maybe not everyone interpreted Penny's statement the way I did, Maybe I was extra sensitive to it. But, in my opinion, The Big Bang Theory has it wrong, Penny has it wrong. I am not ashamed.

Friday, September 12, 2014

The Epic Letter of Complaint

I'm not one to typically complain. I rarely send back meals or make a scene about the poor service I receive. I don't leave complaint cards or online reviews, even when sometimes I should. I don't like confrontation and I lack assertiveness. These are things I know about myself and am working on changing. And when I do decide to stand up for myself and make a phone call about poor service, I often get so distraught that the tears start flowing, completely undermining my efforts.

This year has been a true test of my patience and my tolerance for poor treatment. Between my endocrinology office and online mail pharmacy, I have spent countless hours on the phone or waiting to get the care and medicines that I need.

When the first incident happened, I was upset, but I let it go. It was the first time something had happened in the past 8 years so I didn't make a big deal. When the second incident happened, I was perturbed and frustrated. I knew what was happening and the way that I was being treated was wrong. I made a complaint, but I still didn't feel that my situation was being properly recognized and dealt with. I started thinking about switching doctors, but I still stayed. When the third incident happened, enough was enough. I was mad. Something had to be done.

I wrote this letter (email) back in June. I sent it yesterday. Why did I wait so long? Partially because I didn't want to burn any bridges until I was sure that I wouldn't be coming back, until I had secured a new doctor that I liked. Since this has now been accomplished, I was ready.

Why a letter? As I mentioned early, it's often hard for me to get everything I need to say out before the tears take over. I wanted to be taken seriously, I wanted to be sure that I said everything I wanted to say. And while emotion isn't bad, I didn't want it to get in the way so I articulated my experiences in writing.

What was I hoping to accomplish by sending the letter? Honestly, I just wanted the office to know what kind of errors were being made and the kind of treatment the office was providing so hopefully no one else would have to go through what I went through. Yes I wanted an apology and my feelings to be validated, but more importantly, I want to be sure that other patients are well cared for and don't slip through the cracks the way I did.

So I sent this letter. I know it's long, but hey, a lot of shit happened that I wanted to tell them about.

Dear Mr. X*,

I have been a type 1 diabetes patient in your office for the past 8 years.
I have been on an insulin pump this entire time. 

Several recent medical error events in your office have made me frustrated and worried about the care that I have been receiving.

Recently, while attempting to refill my Humalog prescription I was asked by my mail order pharmacy to call them and verify the prescription that they had received from Dr. Y. This prescription was for 27 vials of insulin, and the instructions were for me to inject 100u three times a day. I usually only require 9 vials for the 3 months.
1.       As I stated earlier, I have been on an insulin pump for the past 12 years, nowhere in my record should it be recorded that I inject insulin
2.       This amount of insulin would probably kill me
3.       I once again needed to call your office and have this corrected with my mail pharmacy so that my necessary prescription could be filled before I ran out of insulin.

When I called the endocrinology office to get the prescription corrected, I talked to a nurse who figured out where the mistake was. I told her that I needed the correct amount sent to the mail pharmacy and she assured me that she was doing this electronically as we spoke on the phone. The next day I still had not received any notification from the mail pharmacy saying that it was received, so once again I called back the office to inquire as to what happened. After checking, it was determined that the prescription was supposedly sent to a different pharmacy and not the mail pharmacy,  although I had asked multiple times over multiple communications for this insurance company mandated change.

Frustrated that this was again not what I had requested, I made sure the nurse sent it to the correct pharmacy. I then called the other pharmacy to let them know that the prescription was incorrectly called in, that I would not be picking it up, and they informed me that they never received a prescription for insulin!

This makes me question both the medical record software and whether your office ever called it in to begin with.

I was forced to once again call the endocrinology office to verify that everything was correct since I was starting to run out of insulin, and was able to get this confirmation.

It is unacceptable that this process took four phone calls to get the correct prescription to the correct pharmacy over multiple days.  As you know, insulin is essential to my health, with fatal consequences if I run out.

And this is not the first time that the lack of care from this office has occurred. Earlier this year, I drove over 40 miles taking off work, waited 90 minutes for an appointment only then to be told by another doctor at the practice (Dr. Y was not seeing patients during this time) that she had clinicals now and could not see me that day and that I would have to come back the next day. Although being compensated for the gas from your office was a confirmation of a problem, this did not instill in me any feeling that I was “appreciated” as a patient, rather that I was considered just another body to move around to the convenience of the doctor.

Additionally, during this past winter, it took 3 weeks and multiple phone calls to get a prescription refilled for my Dexcom sensors due to a misunderstanding in your office that I wanted a refill and not a prescription for a whole new system. During those 3 weeks, I was out of sensors, thus not able to use my Dexcom unit.

This event itself was totally unacceptable.  But coupled with the recent insulin debacle, it makes me question the safeguards (if any) present in your office.

As a patient, and healthcare consumer, this utter lack of respect  of my time, poor record keeping by your office,  and obvious lack of concern for my welling being shown by your staff is not only medically concerning but totally unacceptable.

I have a Master’s Degree in Public Health, and work in the Healthcare arena. I have a high level of health literacy, and unlike many, I am able to generally navigate the complicated and complex health care system. Many if not most of your patients do not have this ability. I hope that you institute changes to the offices policies and practices, so that no one else will have to go through the ludicrous process that I had to endure to get my life sustaining medication and diabetes sensors. This multiple event experience has been completely unacceptable.  

If you would like to discuss this further, I can be reached at XXX-XXX-XXXX

Thank you,

Reva 

*All identifying information has been removed from this letter

Five hours after the email was sent, I received a phone call from the administrative director who I sent this letter to. He apologized for my experiences and told me that he had shared my letter with their chief of clinical services who would be looking into it more and following up. He thanked me for detailing my complaint and asked me if there was anything that I wanted to add. He recognized that I had chosen to leave the practice, but hoped that I would consider them again in the future.

I don't know what will come of my letter and if any changes will actually be made, but I'm proud of myself for sending it. The office needs to know what happened so it can protect its patients. I may not be the most assertive person, but I'm glad that this time I wasn't silent. I'm glad that I spoke up for myself and made my complaints known. Hopefully my complaint can help bring positive changes to the practice and improve everyone's experiences, even if it's too late for me.



Tuesday, September 9, 2014

The Risk

I looked down at my watch. 3:23. Twenty-three minutes past the time of my appointment to see my new endocrinologist. I had arrived at the appointment almost a half hour early, not wanting to be late to the new office. But now I had been sitting in that waiting room for close to an hour and I was starting to get antsy and frustrated.

I checked the time again. 3:27. My impatience had started to turn to anger. Part of the reason I had switched endos was to avoid excessive waits like this. I got up and went to the desk. "Hi, I'm just wondering how much longer you think the wait might be." The woman made a phone call. "They're about to call you back any minute."

Sure enough I soon found myself seated in the exam room. The nurse took my blood pressure and my height and weight, but nothing else. I sat in the chair and waited. And waited. And waited.

When I first arrived at the appointment, I was excited. I was eager for a new doctor, for one that would see me as a person and a patient. Who would listen and help me. Who would take more than a couple minutes to really understand me. I had high hopes for this appointment. But as I sat in that chair, that hope was diminishing minute by minute. 3:47. I started ranting angrily in my head.

"This is so annoying and typical! I leave work early, drive 35 minutes to wait an hour to see the doctor! Not only that, no one checked my glucose, or tested my A1c, or took my meter or pump or CGM to download my numbers. What the heck is the doctor going to talk about then?! How is she going to make any meaningful recommendations?! Why am I even wasting my time here?! Now I'm going to have to find another endo and do this all again!"

I stood up, too fueled with anger to sit any longer. I paced the room as the time approached 3:56. The doctor came in. "I'm sorry to keep you waiting." I shook her hand but didn't reply. She should be sorry. My earlier excitement had turned to bitterness. I sat down, my arms crossed, already defensive. This isn't how I wanted this visit to go.

But then the doctor started talking. 

She started asking all the right questions. She asked about my history, about my numbers, about my obstacles. She asked about my habits, my patterns, my journey. She asked me what I wanted to work on. She asked me what my goals were. And she listened. She took notes, she analyzed, she discussed. She took my CGM and downloaded the numbers, pinpointing right away areas that we could work on, some today and some over time. As she filled out my medical record, she read her notes out loud. They were so thorough and detailed. She made sure that we talked about everything I wanted to and made sure we had a plan to follow up. When we were all done, she looked at me and said, "Welcome to this practice, we'll take good care of you. Your goals are our goals and we'll work together to meet them."

It was everything I hoped the visit would be. She was everything I had hoped my doctor would be. It was night and day between this doctor and the one I've had the past 8 years. It even made that hour wait worth it. Besides the wait, I wasn't thrilled about the fact that I have to go to separate lab for my A1c test or that she couldn't download the information from my pump just my CGM. But regardless, I still consider the visit a great success. 

It wasn't easy to leave my other doctor and practice. It's hard to leave comfort and familiarity behind. But sometimes we don't know what better things await us if we never take the risk.