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. 



Sunday, December 31, 2017

10 Mantras For The New Year

“If you are depressed, you are living in the past. If you are anxious, you are living in the future. If you are at peace, you are living in the present.”- Lao Tzu

This is a quote I posted on my Instagram, and my when my friend Shiri saw it she told me I should use it as a mantra. I had never really used a mantra before... but that’s what I did. And when I’m stressed, I play this quote in my head, and ground myself and bring myself back to the present moment. 

“Keep your soul rooted in gratitude and your branches open to blessings.”- Mary Davis

When I started my gratitude journal as my last New Years Resolution, I never imagined what a difference it could make. Even on your worst days, forcing yourself to remember just a few things you’re grateful at night, lets you go to sleep with a little more peace.


“One small crack does not mean you’re broken, it means you were put to the test and you didn’t fall apart.”- Linda Pointdexter

I don’t know one person who hasn’t undergone some hardship that has made them feel broken. But it’s so true. We’re all still standing. It’s like when you drop a glass and it miraculously doesn’t shatter. 

“I learned that courage was not the absence of fear, but the triumph over it.”- Nelson Mandela

I used to feel weird when people would tell me I was brave or courageous. Because I certainly didn’t feel that way. I felt scared and confused.   But reading this quote makes me feel better about it. How many things have you been scared of this year, but pushed through anyway and survived? That really is courage.

“Having a soft heart in a cruel world is courage, not weakness.”- Katherine Henson

I’m personally a very sensitive person. I’m an empath. I care what people think. When someone around me feels pain, I feel their pain. And this is both a curse and a blessing in my opinion. It’s a double-edged sword. Because the words of others can hurt me so easily, but my ability to feel their emotions makes me someone who wants to be there for them. So while I need to harden my shell and learn to let the opinions of others bounce off, I also need to learn to see my sensitivity as an asset as well. 



“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”- Maya Angelou

I read this quote for the first time this year, and I found it so powerful... because it’s so true. Out of all those things, people won’t remember words, they might not remember actions. But they definitely will remember how your words and actions made them feel. They will remember you by how you made them feel.


“I am blooming from the wound I once bled.”- Rune Lazuli

Look back and see how you’ve grown from each experience you dealt with this past year. You learn, you learn and you learn, and you never stop growing. Thinking back to your hardships, think about how you might have grown and what you might have learned from them instead of how they hurt you. Picture flowers instead of scars. 

“Don’t compare your life to others. There’s no comparison between the sun and the moon. They both shine when it’s their time.”- Unknown

We’re all at different places in life, some of us are a little ahead, and some of us are a little behind. But are we really? Is there really a timeline for life? Everyone is so different, and it’s okay if you’re not going at the same speed that society expects you to go at. None of our paths will be the same. Just because yours is different doesn’t mean it’s wrong.


“In the end you tried, and you cared, and sometimes that is enough.”- Unknown

If your intentions are good, but the outcome isn’t, sometimes you have to give yourself a pass. You just have to, because if in your heart you know that your thoughts were well-meaning, you did everything right. 

“Do not seek love. Be love. Then you will never be without it.”- The Better Man Project

Oh how I love this one. You can spend so much time seeking love. Seeking friendship, and seeking nurturing. But what if you’re the one doing the loving? There’s always loving you can do. And it’s so hard to feel badly when you’re pouring out love. 


I'm wishing you all a happy and healthy new year. 2018, be nice to us!

Wednesday, December 27, 2017

What People With T1D Want In 2018




I went on the Beyond Type 1 App and asked my fellow Type 1s and their famlies what they want to see more of in 2018 for Diabetes. I started with a few of my favorite answers, and then went into sections, because there are some things a lot of people can agree about!

I would love an insulin pump that can be used by blind people. I really want to start pump therapy, but I can’t at the moment due to lack of accessibility. -DJTI

Less diabetes jokes and cheaper care. - Walter Kohler

Less expensive supplies and insulin. Restaurants that put carb info on menus like they do for calories. - Jim DeTore

Would love to have two distinct names for type 1 and type 2. Putting them together doesn’t do justice to the severity of both conditions. - Raj Sen
I am hoping to educate the public about LADA Type 1. I believe there are more adults out there with Type 1 who are misdiagnosed each year. One of my fellow colleagues since my diagnosis found an 88 year old patient with out of control type 2 had been misdiagnosed for YEARS- all because the proper testing was not completed. And, of course, a cure would be nice!!! - Moya Cook
More emphasis on alternative modalities like yoga, breathing, and mindfulness to support people living with T1D. - Rachel Zinman




BETTER HEALTHCARE
 
Easier access to medications, and service dogs! I have had several seizures caused by low blood sugars which happen so often for me I lose the ability to feel when my sugars drop; a service dog would be a HUGE help for me but they are $15,000 and no one has that kind of money. Insulin also currently costs me $500 a month! It’s such an expensive illness! - Jessica Flynn

Better healthcare coverage for insulin and supplies here in the US. And hopefully less expensive insulin as it was some years ago (although very very VERY unlikely) - Stephanie Chaparro

Better healthcare and less cost. - Robb Barth

US here — hoping that accessibility to supplies with greater insurance coverage in 2018. The expense even with insurance is heinous! - Alyssa Black

Cheaper insulin and supplies!!! I don’t work right now and the only reason I was able to have my stuff when my insurance got cut off was because I had left overs. The pharmaceutical companies in this country are greedy aholes!! - Indiana Monterrey

We shouldn’t pay for insulin period. - Kenton Samuel

The government in ON Canada needs to cover more Type 1 supplies instead of only giving us 600 for every three months. - Debbie Lewin

 
In 2018 I would like to see us type 1 diabetics to be able to afford our supplies weather we can afford them and food for our families. Also for Heath insurance to cover our supplies when we need them and not have high deductible. For health insurance employees to understand how stressful it is to get our supplies when we have to decide to get our supplies or put food on our table. For better endocrinologist.- April Black



MORE EDUCATION

A much greater understanding about type one for people without type one. - Troy Sandy

i am hoping that more advocacy happens. more people in books and movies for people to see with real info, more kids taking action and spreading awareness, and health insurance for all. - Ayla Kanow

I wish it was talked about more. You see all these commercials advertising insulin and pills for “diabetics” but 100% of it is for T2D. Every time the public or the media talks about diabetics it’s for T2’s. Let’s get them talking about T1D! - Iesha Meza
Definitely free or more affordable programs for insulin/supplies, more schools educating children to know the symptoms of type 1 and also know the difference between type 1 and 2, and more convenient less painful CGMs 💙 - Erica Ratcliff

Greater understanding from medical support staff, such as GP receptionists, of the variability of managing Type 1.- Becky Vause

Awareness that adults with type 1 diabetes still need help and access to technology such as CGMs/libres.- Clare Hutchins

More support better understanding from employers and medical services help with financial needs as a lot of us struggle each month. - Julie Ann Lyons
For all big companies to have training about diabetes even type 2. Where I work no one understands it as nobody has worked there. Surly all managers in all companies should not at least a little bit about low and high bloods.- Kelly Carter

Increased understanding of how difficult walking this tightrope is ... - Patt Keith

I'm wanting more awareness for us.- Danni Hutchison


And there you have it. The people have spoken. What changes do YOU want to see for us in 2018?




Tuesday, December 19, 2017

2017: The Year of My Diagnosis

This year, all my diagnoses came rolling in like a snowball after 5 and a half years of living in a dry, arid desert with no answers. 

I would have meltdowns every week. “Why is this happening to me?”, “Why are all these tests coming back negative when I feel so horrible?”, “Why don’t any of these doctors care?”

It would be the same questions I’d wonder about every single night. For 5 years. 

This year was about taking control. I decided to “fire” some of my doctors and find new ones who were more proactive. 


MRIs, CT scans, EMGs, Nerve conduction studies, Tilt Table Tests, Urodynamics, Cystoscopies, Echocardiograms, Colon Transit Studies, Hearing tests, and enough blood to feed a coven of vampires, were some of what it took to get to my diagnosis.

2017 year started off horribly. I saw a new neurologist, the same doctor who would later solve my mystery. At that point, she just agreed thought that I had conversion disorder, and I went into a deep depression. This was such a devastating moment in my life that I remember it like a flashback in a movie. I had gone in feeling like I had all my eggs in one basket. I felt hopeless, so I avoided all follow up appointments with her. Until she personally called me months and months later to ask why I cancelled my appointment, and if I could please come in because there are results and treatment options she’d like to discuss with me. 


Little did I know when I got there, I’d have a bomb dropped on me. Stiff Person Syndrome. A rare neuromuscular disease. 1 in a million. What was Stiff Person Syndrome? I had never heard of it, but I was in awe that she thought she solved my case. I started treatment right away, and it worked. Who would have thought that a doctor who once thought I had conversion disorder would be the one to figure out the puzzle while I was busy ignoring her for months?

How far I could move my neck back before and after treatment.


Later that week actually, we traveled to Cleveland Clinic, where I was diagnosed with POTS. I started getting helpful weekly fluids because I was constantly dehydrated which was no help to my POTS. 

I had also gone and seen my new gastroenterologist who had diagnosed me with intestinal dysmotility based on my Sitz Marker study. We’ve tried a couple of medications but so far they haven’t worked. 

I’m being listened to. I’m being treated. I’m being validated. Everything I wished for every night for 5 years. And I took a moment to be proud. There were so many nights I wanted to give up. There were so many times I thought the world had a grudge against me. But the world didn’t have a grudge against me. It just wasn’t my time. 

Getting fluids.


There is still a suspicion from my doctors that some form of Mitochondrial Disease is at the root of all of this, but alas, I won’t know for a while, because the specialist at the Neuro hospital just went on maternity leave. 

So to the undiagnosed warriors out there, you might be worried you’re losing your mind. You’re not. I will always say that waiting is the hardest part. Especially if you’re a complex case, because many doctors who don’t know what to do with you will blame your illness on whatever they can. Which is often your mind. You know your body so well. You’ve lived in it your whole life. If you know something is wrong... something is wrong. If you need to fire your doctor, fire your doctor. YOU have power. More so than you might think. Your diagnosis day will come. But for now I want to commend you for how long you’ve been waiting. I want to commend you for carrying this burden of not knowing around with you. And most importantly, I want to commend you for the fact that you’re still fighting. It will be worth it. 

Tuesday, December 12, 2017

What’s new with me?

I’m looking correctly, and I may not be, my last update with you guys about my health was in July. Oops!

So as you know, in June some my neurological problems were finally diagnosed as a one in a million disease, Stiff Person Syndrome. About a month ago I had a 4 day loading dose of IVIG (Intravenous Immunoglobulin). IVIG is composed of the antibodies of over 1000 blood donors! It is used both in autoimmune diseases, and immune deficiencies. About a week and half later, I realized I was having an easier time walking. It was amazing. My wide based walk that had been compared to a very pregnant lady or cowboy was changed. Strangers were no longer staring at my feet. As I walked by store windows and saw my reflection, I looked NORMAL. So I am so happy to say that IVIG worked for me in that respect.


In the meantime, I got some other surprising news. A while back I had my lab tests come back with a very elevated copper level. We agreed it could be a red herring or a lab mistake, so we redid it. Only it came back extremely high again, showing copper toxicity. Around this same time, I started suffering from upper abdominal pain. After a week of it not going away I went to the walk in clinic who sent me to the ER. Turns out that in the last 6 months, my liver has become riddled with lesions. They say over 12 on both lobes, I don’t know if they mean that as a total tally or separately. The masses are one of two things, both benign: Angiomyolipomas, or Hepatic Adenomas. I would have liked to do a biopsy now to figure out what they are and treat it in case it's the cause of some of my issues, but the doctor I saw felt it was a risk since the tumors are partially vascular. Interestingly enough, he thought that maybe a diseased liver is what is causing my high copper. It could also be causing my loss of appetite, where malnutrition is slowly beginning to show itself in lab work.

And that’s all I’ve got for now. Thank you for caring if you read this! It’s truly appreciated.





Monday, December 11, 2017

Weight and Chronic Illness

I’ll start this post with a trigger warning because weights will be discussed in numbers, so if this is something that triggers you, I’d suggest skipping over this one.



One of my best friends and I have both been through the ringer when it comes to weight. She has Chronic Intestinal Pseudo Obstruction, and I have Intestinal Dysmotility but we don’t know exactly what parts are involved yet. The point is, we both lost our appetites, generally feel nauseous all the time, she couldn’t hold anything down and we both dropped a significant amount of weight.

My weight loss was split into two sections, which I’ll explain in a minute. We were both what some considered “chubby” prior to the weight loss. She’s much taller than me but we were probably around the same size proportionally. During the first section of my weight loss, I was put on Vyvanse for ADD, and lost my appetite. I weighed over 140 pounds and am 5 feet tall. I was at my highest weight ever. With this appetite loss and diversions to certain foods, I lost 20 pounds. I was thrilled with my new body that I did nothing to obtain. I had to get rid of all my big baggy clothes and trade them in for new, smaller ones. 

I maintained that healthy weight for about a year before my gastrointestinal issues seemed to get worse, which is my current situation. Like I said, no appetite, relentless nausea, and abdominal pain. In the last few months, I lost over another 20 pounds. Now I’m bordering underweight, and am desperate for help in that department. It could be a mix of my liver issues with my dysmotility, or it could be something else.

The weight fluctuations that can come with chronic illness are HARD. I had to get a new wardrobe after my first weight loss, and now those don’t fit me anymore. My friend went through the exact same thing. We’ve pretty much been every size of clothing. 

Because of society’s standards and what we see in Hollywood, people we know who aren’t close to us might make comments; “You look so good! What diet are you using?”, “What did you do so I can do it?”, “You look phenomenal!”

In the meantime, we’re here thinking... you don’t want to use my diet. The way I lost this weight was not healthy. It also caused months of pain and suffering that I wouldn’t wish upon anyone. 

And then we have the opposite end of the spectrum. Gaining weight from chronic illness. This is how I ended up at 140 to begin with... my sedentary life due to my illness. But others gain for different reasons. Medications, treatments, nothing comes without a side effect, and for a lot of those it’s weight gain. Some illnesses even cause weight gain.

This is the part where we get to talking about body appreciation, and learning to love the skin you’re in. How is one supposed to have time to do the mental work it takes to love your body and feel comfortable the way you are, when your body is constantly changing? You finally get used to one weight, and the next thing you know, you’re having to adjust to something else. 

Learning to love your body at its highest weight can be a tall task. But over time, it’s doable. 

Learning to love your body at your lowest weight, well... you may not like the circumstances, but you might be pleased with your newfound small body. The problem is, is that then you get used to it. And as you recover and get the proper medical treatment, or go on a medication that causes weight gain, you can feel every pound that adds on, and it feels weird.... because yet again, you have to adjust to your new body, but you just adjusted to your recent one. 

And this cycle can repeat itself many times. How, in this day and age, are you supposed to love and accept every part of your body at all different weights? It’s yet another challenge we face that isn’t talked about frequently.

To my friends with chronic illness going through this... you are not alone. Learning to love your body one way is hard enough with all the pressure from society, but learning to love multiple versions of your body is another challenge in itself. And I am so proud of every one of you chronic illness ladies and gents who are doing your best every day to try to love yourself the way the way you are. And having to do it over, and over again. 

I’ll end this with a quote, “You don’t have a soul. You are a soul. You have a body.”- C.S. Lewis