Saturday, February 24, 2018

Lessons I Learned From Being Diagnosed With a Rare Disease



1- No matter how much medical knowledge you have or think you have, there will always be a disease you’ve never heard of. 

After 6 years of illness, I remember be shocked when my doctor told me she thought I had Stiff Person Syndrome. Because let me tell you, I had done my research over the years. I knew about plenty of rare diseases. But I had definitely never heard of that one. 

2- Doctors are human. As much as we like to think that they’re some sort of magical database of knowledge, they’re not. And when you have a rare disease, they often have to Google it in front of you. 

3- You should probably have a short version of an explanation prepared for when people ask about your disease. Because they will, and sometimes it’s hard to explain. 

4- With rare diseases, it is RARE to be diagnosed in a timely manner... for obvious reasons. The doctors you’re seeing don’t even know this disease exists. And maybe you’ve even heard, “It’s rare so you probably don’t have it.” 

5- You learn to appreciate the people who stick by you. Going for years and years of barely being able to leave the house much, so many friendships get lost. But those ones that stay, those are the keepers. 

6- Compassion. You learn compassion and you’ve gained wisdom. Because you’ve gone through an ordeal. Maybe it was years of doctors not believing you. Maybe it was friends slowly disappearing. Maybe it was your family being unsupportive. Now YOU have learned to believe in others. You’ve learned that good friends are worth more than money can ever buy. You’ve learned that you want to be there for others whose families might not be there for them. Because family isn’t always blood. 

7- You’ve learned the importance of advocacy. Our disease are under-researched, and underfunded, and that is part of the reason we wait so long for a diagnosis.

8- Communicating with someone who also has your disease is like finding a long lost brother or sister. And the bonds you form will be unbreakable. 

9- Sometimes, you learn to be somewhat okay with being an experiment. Your disease is rare, and it might be your doctors first time treating it, so they are learning along with you. They are doing what they can and trying treatments they think will work on you, and while some of them will, some of them will not. 

10- “When you hear hoofbeats, think horses, not zebras.” Well, sometimes it’s a zebra, and sometimes that zebra is you.  And you learn to make noise, so that other zebras are heard also. 



Monday, February 5, 2018

To The Parent Whose T1D Teen Is Struggling

 
2007 and 2017

I was 12 when I was diagnosed with Type 1 Diabetes in 2005. I did the best I could to hide it throughout high school because it made me feel different. I would skip testing my blood before lunch because I wanted to sit with my friends. I had already spent my whole life around diabetes because my mom was 8 when she was diagnosed. I was diabetesed out. 

I didn’t want to talk about it. I rolled my eyes when I got nagged about it. I think I did what most T1D teenagers do.  I had no interest in any technology and kind of just wanted to pretend it wasn’t there. 

All of this might sound like your kid. Do they just not want to acknowledge their diabetes most of the time? Are they completely uninterested and put off by it? Well I put together a little list of advice from someone who was there not too too long ago. 

1- You can try and talk about it with them over and over again, but it will just push them further away. Let them come to you. When they’re ready. As overwhelming as it is for you, it is for them. Make sure that even though you’re worrying, you’re giving them breathing room.

2- On the contrary, let them know that you’re there to help whenever. Ask what they want help with versus what they want you to back off from and wait for them to ask for help if they need it.

3- Know that it’s natural and human to worry. They still feel like your baby. There’s already enough to worry about as your teen starts slowly growing into a young adult, but when you add diabetes to the picture it’s a whole other layer of worry as you’re forced to give them some trust to take care of themselves on their own.

4- You may have read about Friends for Life, a conference put on by Children With Diabetes every summer. The conference center is filled with Type 1 families. I remember sitting down at a big round table with breakfast from our carb-counted buffet with my young adult friends. We ended up chatting with the ladies sharing our table, who were moms of T1D teens, and they wanted our advice. They told us their teens had no interest at all at looking into pumps, and that they just didn’t want to talk about diabetes at all. The first thing that came to my mind was to offer up myself. I gave her my info and told her that I’d be her daughters penpal, and that maybe it would be nice talking to someone just a tiny bit older who gets it. Find your teen a “big T1D sister or big T1D brother”, or set them up to find their own. Which brings me to my next point. 

5- There are many ways to go about this. A) Try attending a fun conference like Friends for Life. There’s camp for the teens and they go to Disney and have socials and it’s tons of fun. The teens all either have Diabetes or have a sibling with T1D. I happen to know some of the Teen staff and they’re so much fun and great mentors. B) Try to let your teen know about the Diabetes Online Community. They can find a bunch of other people their age with T1D, with common interests, and most importantly, common frustrations. One thing I’d recommend would be joining the Beyond Type 1 app. This is app is for anyone with T1D, and loved ones of T1Ds. If you’d rather go on yourself and ask for advice from fellow parents, there are always people willing to help. If they want to sign up themselves, even better, there are plenty of awesome teens on there that would love to befriend them! And they can vent when they feel like the need, to a bunch of people who get it and who they can even laugh about diabetes with. C) Another option is signing up for Beyond Type 1’s Snail Mail Club. They will set you up with a penpal around their age, and they’ll get sent a little package with stationary and stickers. It’s a fun old school way to connect with people who can relate. 


I hope something in here is helpful to a T1D mom or dad somewhere. Know that the teen years are the hardest, for the parents and the kids, but that it gets easier. Your teen will come to terms with their defective pancreas, no matter how long it takes. There will be bad days and good days. And once you make it through those teen years, while you let them know every once in a while that you’re there whenever they need you, they will blossom into young adults who want to spread awareness and fund for a cure just like you. 




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.
Michelle: LOW BLOOD SUGARS.


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?

Ashlyn:
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:

Ashlyn- 
Blog: http://atrailofteststrips.blogspot.ca/
Instagram: @ashlynmarie.t1d

Kayla- 
Instagram: @frenchiegang_

Craig-
Website: https://www.betacellpodcast.com/
Instagram: @betacellpodcast

Kerri-
Website: http://sixuntilme.com/wp/
Instagram: @sixuntilme
Facebook Page: https://www.facebook.com/sixuntilme/

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.