Friday, January 26, 2018

5 People With Diabetes Walk Into a Bar

So unfortunately we didn't really walk into a bar. But I did ask these fun little questions to collect answers from some friends and see how we all compared. This was too much fun and I had a feeling all our answers would be slightly different.

1. Your blood sugar is 8.9 mmol/L / 160 mg/dl. What do you do?

Ashlyn: Correct... unless I have IOB, then I leave it alone.
Kayla: I would leave it. I can’t correct if it isn’t over 200 or I will drop too low.
Craig: I correct! 160 mg/dl is my Dexcom "high," so I immediately start taking insulin (unless I've previously corrected for it and am waiting for that to kick in).
Michelle:  Leave it. That’s exactly where I’m comfortable.
Kerri: Consult my Dexcom graph and go from there.  Single numbers can be misleading snapshots of what my blood sugar is doing, but putting that number into the context of my CGM trend graph helps me decide if that 160 mg/dL is going to be corrected or if it’s already trending down. Or up.

2. What is your biggest diabetes pet peeve? 

Kerri: My biggest diabetes pet peeve is definitely diabetes. Full stop.
Ashlyn: My biggest pet peeve is when people walk up to me and TOUCH my devices on my arms. When did it ever become okay to touch a stranger?!
Kayla: People say “You don’t look like you have diabetes.” That’s a really hurtful comment to hear because type 1 Diabetes is an invisible illness. You can’t tell if someone has type 1 or not by looking at them. Society has been taught only about type 2 Diabetes and we need to spread more awareness on type 1.
Craig: When your blood sugar is high at night and you take your correction and wake up two hours later and nothing has happened. And then you do it again, and again, and again, and then it's morning and you've gotten no sleep and you're still out of range.

3. Would you rather be high or low?

Ashlyn: Low. Being high makes me feel disgusting.
Kayla: I would rather be low than high. Being high is the worst to be. Having highs are the worst because sometimes I throw up!
Craig: Being low is the worst feeling in the whole world but at least I can eat something and be back in range in 15 minutes; however, when I'm high it can take hours for that to get back in range and then I feel crappy that whole time. Low wins out barely.
Michelle:  High. As per the last question.
Kerri: Ugh, this is a rough question.  My knee jerk reaction is to prefer a high blood sugar over a low, because lows immediately make me feel like both my safety and the safety of my children is at risk.  But long term highs compound and cause the stuff I have nightmares about, so that’s not optimal either.  Can I go back to being 160 mg/dL? 

4. Pump or MDI?

Craig: Pump! I did MDI for my first 10 years with T1D and I don't think I could go back.
Kayla: My pump! It makes Diabetes mentally easier on me.
Michelle: MDI. Good old school syringes.
Kerri: Pumping all day, for me.  My brain is scattered and if I didn’t have my insulin attached to me, I’d forget to take it.  That, and I was never a fan of poking my skin repeatedly throughout the day. 
Ashlyn: Pump.

5. Your BG is low and you have nothing on you to treat it. First thought?

Kerri: Ooooh, a scenario!  Am I stuck  in traffic?  Because if that’s the case, I definitely have some rogue Cheerios or some smushy granola bar smuggled away somewhere in the car.  (My car is never truly “empty” or “clean.”)  Am I on a run?  Time to sprint and see if I can use some adrenaline to boost my BG, or perhaps knock on a neighbor’s door to see if I can borrow a snack.  But the truth is that being low and without something to treat it with is a scenario I fear a lot, and actively plan against.  I don’t carry this giant purse without reason. 
Ashlyn: Where is the nearest vending machine?
Kayla: I will eat my hand if I have to live at this point! Jk.
Craig:  More often than not this is my real life—I'm really bad at remembering to buy more low supplies. I hang out with enough people with T1D (like when I go running with Type One Run) that someone always has an extra something to give me, but if I'm not with them I just find the closest food I can, like juice at Starbucks, 7-Eleven, McDonald's.
Michelle: I’d wonder how many times I need to be in this situation to learn my lesson, then go try and find a store or vending machine.

6. You’re on your way to an important appointment/meeting and realize you forgot your insulin at home. Do you go back home or leave it? 

Kerri: I go back.  As soon as I realize I’m without insulin, I know the panic will set in, which will cause my stress levels to skyrocket, which will cause my blood sugar to rise.  (See also:  I probably have an insulin pen in my car, for just in case moments.  See also:  the comment about my car never being truly clean or empty.)
Kayla: I would go back for my Insulin. Nothing comes before my health.
Ashlyn: Depends on how far away and how long the appointment/meeting is. If it’ll be a long day, I go back and risk being late.
Craig: It would depend on how far away I'm going. If it's not that far and I don't plan on eating, then I'd just go to the meeting. If I go a little high for an hour or so, no big deal in the long journey of my life. If it's far away and I won't be home for many hours, I'd go back and get it.
Michelle: Leave it and hurry home after.

7. Do you like being asked about your diabetes or not? Or could you take it or leave it?

Craig: It depends on how the other person is asking. If they're genuinely interested, then I'm always happy to talk about T1D, but if I sense judgement or disgust, I don't feel like I always have to fight that battle. Sure, we're all advocates for T1D, but we're also people too and sometimes we just want to get our coffee and leave the store without dealing with all that negativity. You have to know what battles are worth fighting or you'll burn out.
Kerri: I like being asked, most of the time, if someone is looking for more information, or to see if I’m doing okay.  I appreciate their concern and friendship.  But if you want to peek over my shoulder and run commentary about my CGM graph?  No thank you.  You can go sit over there, please.
Ashlyn: Yes! I love it when people ask because I love to educate!
Kayla: I love when people ask me about my Diabetes. I got Diabetes at 16 so I was never teased or made fun of in school for it. I never hid what I have nor am I ashamed to talk about it. I never get sick of educating others about type 1 Diabetes.
Michelle:  Yeah I’ll take any opportunity to educate. Sometimes I’m tired though.

8. How much do you care about your A1C on a scale from 1-10? 10 being most.

Michelle: 4? Because more and more data is coming out that the A1c doesn’t really reflect your diabetes health. For example, I know my control isn’t optimal. I’m usually on a rollercoaster. But I come out of it with a good A1c, because when you average all those highs and lows, it looks good.
Ashlyn: Eh... 3. With all of the data that I have at my fingertips daily with technology, my A1C is just another number.
Kerri: I’ll put my concern on the 7 level, so long as my A1C isn’t truly high.  Perspective matters.  Time in range matters so much to me, as does standard deviation.  But I’m an old school PWD, and my A1C is synonymous to a report card on my diabetes.  It’s a hard habit to break, that feeling of judgment and fear.
Kayla: I do care about my a1c but I don’t let it get me down. As long as I am trying my best that’s all that matters. I would say a 7, I care for health reasons. Just to control long term complications.
Craig: I think that A1c is a very stupid number that doesn't tell you anything about your control. I remember being 5.8% once and my endocrinologist being mad at me because I was low so often and that really changed my perspective on what "control" is. Now, what matters to me more is the amount of time I spend in range. I care about my A1c in the sense that I want to be healthy and my blood sugars to be in range, but the actual number is pretty meaningless to me.

9. You see something you really want to eat but it has 90 carbs. Do you eat it?

Yes! Bolus worthy!
Kayla: No. Not taking chances on feeling like trash!
Craig: Always. Just because we have T1D doesn't mean we aren't people. Live your life and fit diabetes into that, don't fit your life into diabetes.
Kerri: No … wait, what is it?  Is it made with lemon?  I might be swayed for something lemony. 
Michelle: Depends on the day but yes. Then take all the insulin. Cheesecake? Heck yes.

10. Do you believe there will be a cure in 5 years?

Ashlyn: I don’t think so, sadly. I think we live in a world where money rules everything and right now, diabetes is too big of a money maker for anyone in the right industries to really want to cure it.
Kayla: No I don’t think we will have a cure. I think we have been controlled by the government with the pharmaceutical industry. I really hope one day we do have a cure though.
Craig:  Nope. I don't worry to much about finding a cure, just making life easier for people living with T1D. Humans have never cured an auto-immune disease, so I don't expect curing T1D to be easy or quick.
Michelle: I wish I could but I struggle to believe it! Then at the same time I want to be hopeful for all these little kiddos being diagnosed. But I do really struggle to believe it.
Kerri: I hope so.  I always have hope.  But just in case, I’ll keep working hard to live well with diabetes.

You can find the friends who I tortured with these questions here:

Instagram: @ashlynmarie.t1d

Instagram: @frenchiegang_

Instagram: @betacellpodcast

Instagram: @sixuntilme
Facebook Page:

Until next time!

Friday, January 19, 2018

When I Confronted The Doctor Who Belittled Me

2017 really came around full circle.

About two month ago I wrote a story about gaslighting by doctors. My diagnosis had finally been confirmed and I was ready to write about the painful experience I went through during March or February of this past year. To sum it up as quickly as possible, a doctor walking around with a big ego came in with a large group of students, told me no neurological condition could cause the way I walk, and made fun of me in front of them… laughter included. This was obviously a bit of a traumatizing situation, as when you’re hospitalized you’re completely vulnerable.

In my article I wrote that one day I wanted to confront him and let him know that the things he said weren't okay.

And on this day, things came full circle. Between his clinic appointments, I confronted the doctor who made me feel so small by turning my case into a joke. I'm still a little surprised at myself for having the guts to do this, but I did it. It took him a minute, but he remembered me. I told him that I was now properly diagnosed and being treated at the Neurological hospital. I told him that in the future, he probably shouldn't speak to a patient like that in front of a group of learning students, and how awful that experience was for me. He very briefly apologized and I felt like a weight was lifted. It felt like closure.

Later on in the day, I was shocked when I got a phone call and it was him on the other end. He said he was taken aback earlier and didn't get to say everything he wanted to say. First, he apologized for calling me on my cell phone. He continued on to say how sorry he was and how wrong what happened was. He told me he did me a complete disservice, and that he can’t imagine as a young woman in a hospital bed how much anxiety and stress he must have caused me. He went on to say that if I ever needed anything, not to hesitate to come to him.

So many thoughts went through my head. Sheer excitement. He got it. He understood what went wrong, and had no ego about it. I could feel the regret in his voice. I couldn’t believe he took the time to look up my chart, considering I’m not even a patient of his, and call me during his busy day. He was human. And I don’t know how he’ll remember this. I don’t know if he’ll forget about it, or if it will haunt him the rest of his career. But either way I have a feeling that a young woman with odd symptoms will never be treated like that by him again. And that makes confronting him all worth it. I admit that my main goal was closure, which I now have. I can forgive him and thanked him enormously for taking the time to call. But to know that maybe now in cases similar to mine he might think of me and be gentle, kind, and open-minded… that’s the part that makes me feel like it was all worth it.

If you have been mistreated by a doctor, you have a right to stand up for yourself. Doctors are only human, and we’re only human. They may feel intimidating, but they cry the same tears we do. They have little things that make them smile the same way we do. They have fears, the same way we do. So next time you feel intimidated by one, the next time they make you feel small, try and remember that you are just as worthy as them, and if you are treated badly, it’s okay to say stand up for yourself, even if it’s months and months later. It’s a good feeling.

Thursday, January 11, 2018

What in the world is “Stiff Person Syndrome”?

Once my diagnosis sunk in and I went through part of the acceptance process, my first thought was, “Stiff Person Syndrome?! They couldn’t have named it something better?!” See, when I’m asked what illnesses I have, and I have to respond “Stiff Person Syndrome”, I either laugh, or they reply, “Stiff Person Syndrome?”, as if I’m just kidding with them by saying something with such a name. Nope. I really have a disease called Stiff Person Syndrome. Not the greatest name, but nonetheless a very real thing. 

Stiff Person Syndrome is so rare that it is thought to occur in fewer than 1 in a million people around the world. So we get very, very little awareness. 

  1. Stiff Person Syndrome is a neuromuscular autoimmune disease associated with high levels of anti-GAD antibodies. However, not everyone with SPS has these antibodies. 
  2. Stiff Person Syndrome is progressive, meaning it worsens as time goes on. 
  3. The symptoms of Stiff Person Syndrome include progressive muscle rigidity, with spasms, aching discomfort, muscle stiffness, muscle overactivity, spasticity, difficulty with ambulation, muscle fatigue, myoclonus, muscle cramps, muscle pain, and more. 
  4. 60% of people with SPS have Type 1 Diabetes.
  5. People with SPS are often left untreated for years because of how many doctors their illness can stump. 
  6. SPS often co-exists  with other autoimmune diseases, such as Type 1 Diabetes, Thyroid Disease, Adrenal Disease, Pernicious Anemia, and Vitiligo. 
  7. In the worst case of end-stage SPS, spasms causing breathing impairment and swallowing difficulties can cause fatality. 
  8. It takes an average of 7 years from onset of illness to receive a diagnosis. 
  9. Treatments include benzodiazepines (most commonly Diazepam), Intravenous Immunoglobulin (immunoglobulin is taken from the plasma of over a thousand blood donors), and Plasmapheresis (a process where the blood is taken out of the body and the plasma is separated from the blood. This removes the antibodies and then the clean blood is returned to the body with a plasma substitute).
  10. Because of the rarity and complexity of the disease; many patients are misdiagnosed and labeled as psychogenic, delaying much needed treatment. 
  11. The progression of the disease is unpredictable and is different in every patient. 
  12. Mobility aids are often needed because falls are frequent. 
  13. SPS was discovered in 1956.
  14. Our awareness ribbon is the zebra ribbon, meant for rare diseases. 
  15. SPS is an umbrella term and there are many different variations. These include classic SPS, a Stiff-Limb Variant, Jerking-Limb Variant, and Stiff-Trunk Variant. It also includes PERM, which stands for Progressive encephalomyelitis with rigidity and myoclonus. 

I was relieved to finally have a diagnosis. However, the next phase was worry about the unknown. SPS is such an unpredictable disease, and progresses differently in everyone. I have no idea how quickly or slowly mine will progress, and I’m not a fan of the unknown. But for now, I just have to remind myself to be thankful for every good day.