Whole Food, Plant Based Eating - My New Hope

I am thinking of taking before pictures today. I cannot tell you how many times in my life I have taken before pictures. It is a LOT. A really BIG number. I can tell you how many times I have taken after pictures. Zero. I am continuously looking for improvement.

There are many reasons for this. One is that my health has been on a continuous decline pretty much since birth. One is that doing the same thing day after day is not in my nature. The reason that stands out is that it is difficult to appreciate my body for how it is today. 

So, while I am starting a new program, (and I am going to tell you ALL about that), I am going to take time to appreciate the beauty of my body and how amazing it is.

Let's start there. 

Regina Spektor sings in her song Folding Chair:

"I've got a perfect body, though sometimes I forget,
I've got a perfect body cause my eyelashes catch my sweat."

I am going to tell you what makes my body perfect. This is difficult because it is more in my nature to tell you everything that makes it imperfect. Everything that is wrong. But that is not the purpose of this exercise.

My oxygen saturation is nearly ALWAYS above 90%. That is miraculous with lung disease.

I am a dancer. I have had multiple neurologists watch me do their tests and say, "Are you a dancer?"

My eyes, hair, skin are not all one color. When I was little my mom said my hair was calico. It has been naturally red, blonde, brown and white. I have unnaturally made it various other colors too. My blue eyes have hints of brown and green and gray. I don't know what to call my skin color. It has pink undertones and lots of spots. Society calls me white but I have some white hair now and some white in my eyes and my skin is not that color. I AM a rainbow. 

My body wants to heal. It tells me immediately when it is unhappy. I recognize that things are wrong before the medical community does. My body talks to me.

My body wants to dance and sing and hike the grand canyon. My body has dreams. My body is a fighter. 

I was not born in my natural state. I was born sick. My natural state is health. I have been trying to get there my entire life.

I think I finally know how. 

The skeptics will say, "Come on Susie, how many times have we heard this. How many diets and exercise programs and supplements and medical professionals have you tried already?"

I have travelled across the country for help. I have seen so many doctors and even people outside of mainstream western medicine. If you could buy health I would have it. I have read countless books and blogs. I have watched YouTube videos and documentaries. 

What crazy thing am I trying now?

A Whole Food, Plant Based Diet (WFPB)

I know, I know, I tried it before. And you know what? My health was better then. 

I understand now why I quit. In episode 6 of the iThrive documentary series it explains how our cravings are there for our our survival. Getting through the initial craving phase is not the end! Periodically our brain will say, "Hey, remember that amazing food we haven't had in a long time? The one with a lot of calories that tasted really good? We need that. We need that right now! Go get it now!" It can happen months or years later even if you haven't been cheating. It is a biological function to ensure our survival. It reminds us of high calorie food sources. It doesn't make me a bad person or mean that I have no will power. It's simple science.

This time I have more knowledge and resources. I am going to document my progress and share my resources. 

What is different this time? 

I am going to avoid all animal products, oil and processed foods. They all recommend avoiding salt but because I have Dysautonomia I cannot do that yet. I hope to get to the point where I can but for now I take salt capsules. 

Last time, I ate processed foods and used oil and I think I ate too many grains. They say that if you are WFPB and aren't losing weight to cut the oil. 

Last time, my motivation was to lose weight and gain energy. This time, my motivation is survival. I want to live. 

Last time, I started because I watched the documentary Fat Sick and Nearly Dead so I was drinking a lot of juices. This time, I am limiting my juice intake. I am not cutting it out but I am focusing more on whole plants.

This time, I feel like I have a lot more knowledge. From everything that I have tried I have learned. I have learned about the human body. I have learned about myself. 

To prepare for this I was introduced to the Medical Medium and Mastering Diabetes and iThrive. It was in the iThrive facebook group that someone introduced me to the How Not to Die book. That was very impactful. I have been listening to books on Audible. After I listened to that one I bought the matching cookbook. Then I listened to Eat to Live and now I am finishing up the China Study. I never wanted to read that book because I don't like reading scientific papers even though I love science. But the book has been better than I anticipated. 

I am so grateful to all the people that have been working on this research so that I can benefit from the information. 

My last animal meal was on Wednesday, December 5th, 2018. Today is December 13th so I have been doing this for a week without cheating on purpose. I say it that way because as my eyes are opened I realize that there are things that I don't want to put in my body in places that I don't expect. Like corn syrup in gummies that I chew to avoid a virus or sugar and oil in the pasta sauce I bought. After my eyes are opened I don't use that product anymore. 

Last Wednesday, my husband and I went out for cheeseburgers and french fries. I had fry sauce (if you're not from Utah, it's basically ketchup mixed with mayo) and a chocolate/vanilla twist ice cream cone. That night I was in so much pain that I contemplated going to the Emergency department of the local hospital. Why didn't I? I didn't want to bother anyone, I was tired, I was in pain, I am a complicated chronically ill person and don't have a lot of faith in Emergency doctors finding the answers I need. So, I tossed and turned all night. 

The next day I woke up determined to figure out what was wrong and fix it. I had heard several times about water fasting. I knew from experience that not eating decreased the pain. I decided I would still have my coffee but I wouldn't eat until I could figure out what was going on. The pain was in the left upper quadrant of my abdomen. I know that is the location of the spleen and the liver. I know I have fatty liver and I could have granulomas from Sarcoidosis in my liver. I also know that my Sarcoidosis is worst in my lymphatic system. I had read that an enlarged spleen is fairly common in Sarcoidosis and that sometimes it needs to be removed. I did some Googling. It turns out the spleen is part of the lymphatic system. That makes sense. What kind of doctor takes care of a spleen?  I had my infusion that day so I asked my nurse. She said she thought it would be a hematologist and recommended one for me. I Googled it and she was right. 

I called my primary doctor and asked her to order a CT of my abdomen. I also called the Hematologist and asked for an appointment. They said I needed a referral. So, I called my doctor again and asked for a referral to the Hematologist. My doctor ordered the CT and sent the referral. I called the Hematologist office again to ask for an appointment. They said that he couldn't help me because I have Sarcoidosis. They said that if I had Lymphoma they could help me. I argued and explained about the spleen. They finally succumbed to making an appointment but made sure to point out that the doctor doesn't help people with Sarcoidosis. They recommended a Pulmonologist or a Rheumatologist. I explained that I have seen both of those doctors and that they can't help in this situation. There were lots of tears. I felt like they were telling me they didn't want to help me because I have a rare condition. I finally found the name of a Hematologist that treats people with Sarcoidosis but by then I was done for the day. 

The next day I had my CT done. It said my spleen was normal and that I had fatty liver. It confirmed that my lymph nodes were still enlarged. I cancelled the appointment with the Hematologist that didn't want to see me. I ended my fast with a smoothie on Friday evening. The pain was gone and so was my determination to receive medical care. 

I was fully 100% committed to a Whole Food, Plant Based diet. My new hope. My only hope. 

Hope is so important. When you are chronically ill, hope is in short supply. When your body rejects medication after medication and your insurance denies the only remaining treatment option, hope feels gone. 

On November 13th my mom shared a link for iThrive. I thought it was an MLM she was doing so I clicked on the link and signed up not knowing what it was because I wanted to be supportive. It ended up being a documentary series. They emailed me a link to a new episode each evening for 9 days. I watched them. Then I found myself not wanting to wait for the next episode. On the last day I bought the series. It came with a free copy that I gave to my mom. It changed my life. I started making little changes right away. 

In the one week I have been doing this completely I have noticed lower blood sugars, lower blood pressure and a lower heart rate. That is promising. :D

5'9" tall

204 pounds

(started at 211 pounds on 11/18/18)

45" waist around navel

My Christmas Wish

Photo by Victor Garcia on Unsplash

I am a 100% white American of European descent. That's what my DNA test from Ancestry.com tells me. The first 11 years of my life were in Maryvale, a part of Phoenix, Arizona. That was the 1970's. Our area was predominantly white. It was unusual to see someone that was a different color or from a different country. When I did, I usually made friends with them. We had derogatory names for people who were different and we told pollock jokes. I didn't know what any of that meant. I didn't even know what a pollock was. I had never heard of Poland.

My Grandparents made frequent trips to Mexico. They would bring me hand made gifts from their travels. I was the only little girl I knew that had crocheted sombreros for her Barbies. I remember making a derogatory remark about Mexicans. I was 6 years old. I didn't know better. I was repeating what I heard in my community. My Grandma educated me and told me that there were a lot of people in Mexico who were hard working Entrepreneurs. I knew what that was because my dad was a hard working Entrepreneur. She told me that a Mexican woman had taken the time to make those sombreros for my Barbies with her own hands. She told me that it was a beautiful place and that is why she enjoyed going there with my Grandpa.

I know now that not everyone had a Grandma like mine.

That area of Phoenix is now predominantly hispanic. If I were to move back, I would be the minority. And you know what? That is ok!

I grew up and married a Mexican. He has been a wonderful husband and Father. It hasn't been easy. Marriage is work. When you have 2 different cultures, that makes it more work. But again, that is ok. It is definitely worth it. Work is not bad.

My husband's family has become my family over the 26 years that we have been married. Some of them live in Mexico and some of them live in the United States. My husband's heart will always be Mexican. He loves the land of his birth. It is a part of him. He didn't want to become an American citizen because he didn't want to betray his homeland. He is a citizen now. Largely to appease my father. My father was worried that someday something may happen to separate us if we were not citizens of the same country.

Holidays are tough having family in 2 countries. Everyone wants to be together but it is often not possible. This Christmas my husband is driving his mom to a family gathering in Chihuahua, Mexico. I am not able to attend because my health is not strong enough for the trip. My mother in law is 87 years old. I watched her heart break when I told her that I would not be able to go to Mexico with her. She doesn't understand my disability because she has dementia. This will be the first Christmas apart for Antar and I in the 26 years and 9 months that we have been married.

Isn't that enough to make this Christmas a little challenging?

Well, I guess not because there is more.

The president of the US has threatened repeatedly to shut down the entire Mexican/American border and stop trade with Mexico. He actually did shut the border at Tijuana recently for around 7 hours affecting 90,000 people including American Citizens. There has always been a free zone when you enter Mexico. You could travel a certain distance from the border without a permit. That is not true right now.

When I watch the stories on the news, they don't make any sense.

I have family in Mexico that doesn't want to come to the US because they are afraid it is too dangerous. I have family in the US that don't want to travel to Mexico because they are afraid it is too dangerous.

This is not about blame. This is about me and my Christmas.

I was very young and idealistic when NAFTA first passed. I guess I still am. I thought it meant that we could come and go and do business with Mexico and Canada and be a big happy family. Like 3 countries united. Right? Wrong.

I am thinking of the Grinch. How his heart was too small but the whos in whoville were able to share the Christmas spirit and make his heart grow. That is my Christmas wish. The the little hearts will grow so that we can all be safe and happy and merry and I don't have to worry about my husband getting stuck in another country.

I wish all of you a Merry Christmas and Happy Holidays.

Photo by Denise Johnson on Unsplash

How I Discovered That I Am Pansexual

I am Pansexual.

That's crazy.

Except it's not. It makes perfect sense when you understand it.

I am not really sure where the beginning of this story is. I will pick a time and place. The time and place that I choose is 2015 or 2016 in a meeting at work. One of my favorite things about working is volunteering. I love the Employee Resource Groups and the activities that they involve. I love to socialize. So, on this day I was in an LGBTQ meeting at work. I met someone there. I want to share her name because it is a beautiful name for a beautiful person, but I won't for her privacy. She is married to a transgender woman. The way that showed up in her life is that she married a man who later started to transition to a woman. She unconditionally loved and accepted her spouse. That was so beautiful to me. I thought this is true love! This person is so beautiful inside and out that I can hardly stand it.

I went home and told my husband the story. It was interesting to him but he didn't have as intense of a reaction as I did. I told him that I loved him so much that if he ever decided he was a woman and wanted to transition it would not affect our marriage. I really thought it was a measurement of how much I loved him.
My husband responded by looking at me like I was a martian and said, "Ok." 
I said, "It's your turn."
He said, "What?" genuinely puzzled.
Me: "You tell me. Tell me that you would still love me if I wanted to be a man."
Him: "Do you?"
Me: "No."
Him: "Good."
Me: "Well?"
Him: "Just don't."
I was crushed. I thought it was proof that my husband did not love me as much as I loved him. But I decided I wasn't going to let it affect our marriage. He was a still good husband.

Fast forward about a year. I think it was 2017. I was watching I Am Jazz. I love that show! She is awesome. She was talking about dating. She explained that she was Pansexual. I had never heard of that word. She said it meant that she was attracted to a person's spirit regardless of their body. Gender did not matter. It felt like a spiritual experience. Like a pillar of light and angels singing. I just felt it in every cell of my being.

That's me! That's what I am! I am Pansexual. 

I didn't tell anyone at first. As I was thinking about it I realized something important. Wait for it.....

My husband is Heterosexual.

I realized that I had never really been able to understand that word. I thought I had been heterosexual all of my life. In thinking that I thought all heterosexuals loved like I do and thought like I do. They don't! Part of why my husband loves me is BECAUSE I am a WOMAN. Woah! Mind blown. Our love is different. I don't really care if he is male, female or something else. But it is important to him that I am a woman.

All of a sudden I had a new understanding and appreciation for my husband. Learning that I am Pansexual has been good for our marriage.

Nothing changed on the outside. We have been monogamously married for 26 1/2 years and we will continue that way for as long as we are both alive on the planet. But now we understand each other so much better. It is beautiful.

My husband is so amazing because he loves me and accepts me as I am, as I was, and as I grow and change. We grow and change together. No one stays the same. We are all growing up.

Dear 2017 this year I experienced... August 2017

I found this draft that I never published. It is probably unfinished but I am going to publish it anyway. August 2018 was way better than August 2017. That is something to be celebrated! :D

Dear 2017 this year I experienced....

August 2017

The 1st week of August was pretty good. I worked 4 days straight. It was helpful that we were staying at a timeshare that was only 5 minutes from work so I didn't have much of a commute. There were times during the day that I was supposed to work on cases but since I had missed so much work I didn't have any cases to work on. So, I reclined in my chair and rested. I did research on how Long Term Disability works. I called my primary doctor to see if she could still treat me with my diagnosis of Sarcoidosis. She said she could.

Thursday, August 3, 2017 - I went to get fluids after work. I felt like the 1 hour drive each way kind of defeated the purpose.

Friday, August 4, 2017 - We went to my niece's wedding reception after work. I couldn't stay very long.

Saturday, August 5, 2017 - We checked out of the timeshare. That afternoon I went with my daughters to get mani/pedis. I could barely wait for him to finish my toes. I couldn't stay to get my hands done. I needed to go home and rest.

Sunday, August 6, 2017 - I took my daughter, Edna to the Emergency Department. It was her gall bladder. We went to get some groceries and came home.

Monday, August 7, 2017 - I drove into work and accepted that I couldn't do it. It was too much. I cleaned out my desk and went home.
I took Edna to see a surgeon about her gall bladder.
I went to see my primary doctor to fill out Long Term Disability paperwork.

Tuesday, August 8, 2017 - Antar had a doctor appointment.
I took Edna to get an abdominal CT. I got my mammogram while I was waiting.
I went to the infusion center for fluids.

Thursday, August 10, 2017 - Edna had gall bladder surgery.
While she was in surgery I went to my follow up appointment with the cardiothoracic surgeon.
Then I went to my endocrinologist to get a glucose monitor put on my arm.
I managed to get back to the hospital before Edna was done. My husband was there the whole time.

Tuesday, August 15, 2017 - Antar and I went to our neurologist.

Wednesday, August 16, 2017 - Edna had her follow up appointment with her surgeon.

Thursday, August 17, 2017 - I went to my Endocrinologist.
I saw my ENT.

Friday, August 18, 2017 - I have a nurse case manager with my insurance that called to check in on me.

Monday, August 21, 2017 - I went to see my Optometrist to talk to him about my Sarcoidosis.

Thursday, August 24, 2017 - I had labs done for the nephrologist.
I went to my follow up appointment with the pulmonologist.

Monday, August 28, 2017 - I went to see my Gastroenterologist.

Tuesday, August 29, 2017 - I saw the Nephrologist.

Wednesday, August 30, 2017 - I saw my therapist.
I went to the infusion center for fluids.

Thursday, August 31, 2017 - I took Antar to see the neurosurgeon.

Words

This post is kind of a solo therapy session that I am opening up to voyeurism. I am going to confess now that there may be spelling errors and grammatical errors and poor use of the English language. I really thought this was all about words until I opened up Blogger on my computer and saw my last post. It was my reaction to seeing the Endocrinologist. This is much bigger than words. Let me start by telling you the most obvious problem. No, let me start by illustrating my love of words.

I love words. I love language. I consider myself a linguist even though I do not have a degree from anyone other than myself. I am the kind of person who writes for fun. I read the Work and the Glory in 10 days back in 1999. I guesstimate that is about 500 pages per day. I read while I made pancakes and did my household chores. I was a stay at home mom then. A very honorable profession. Last year when I found out I could no longer go to work I decided I had time to study 8 different languages on my duolingo app. I still remember that in one of those languages Draig means Dragon. I believe that was Welsh? Prynhawn da, Draig. Do people in Wales often have the opportunity to say, "Good afternoon, Dragon."? I thought it was fun that Dragon was considered a basic word in that language.

I am having a total problem with words right now. I can't read a book. I can't listen to a book on audible. I can't read long posts on Facebook. I can't read articles that I am interested in. And it doesn't stop there. I am having trouble finding words when I speak. It doesn't matter what language. Why? I don't know. Words are causing me stress. How can something I love so much cause me so much stress. I started this year with the intent of writing a novel.

Let's look at the coincidence. My last appointment with my endocrinologist was not good. Everything was bad. I blamed food. I completely changed my diet. The majority of the books I have read in the past couple of years have been related to diet. While I was still working, before I started Keto, I read Grain Brain and other books about the horrors of eating bread and grains. Since 2008 when I was diagnosed with Diabetes I cannot even tell you how many books I have read on diet. In fact it goes back before that. I have a history of eating disorders and like most people I have spent my entire adulthood trying to lose weight. I read books about diet and exercise and every time I would start a new program I envisioned myself finishing with the Iron Man competition or the Boston Marathon or being a Fitness Model. You could say I always had high hopes.

Let's jump to the present. My exercise program? I am trying to plank for 10 seconds a day. You read that right. That's not a type o. I said seconds, not minutes. I successfully did Keto for over a year and I got good at it. People loved my cooking. It was easy and intuitive. Then, that fateful day with the Endocrinologist, when I learned that my Diabetes, High Blood Pressure and Cholesterol were all terribly high and my vitamin D was terribly low happened. So, a friend told me about the Medical Medium and Mastering Diabetes. I switched from all protein to all fruits and vegetables. I did it gradually over a month. These guys said I could cure myself with diet. That didn't last long. I got really bad bloating and abdominal pain. I went to the Gastroenterologist and was put on the Gastroparesis diet. It turns out that I can't process all of that fiber. A Gastroparesis diet is counterintuitive to a Diabetic. Everything I couldn't eat before is pretty much all I eat now. I still try to avoid added sugar and desserts. But I am eating white bread and pasta and drinking fruit and vegetable juices. Now, I am low fat, low fiber. I honestly feel better when I don't eat. For a little while. Then I start feeling sick and shaky.

I guess I figured it out. I am going to ease myself back in. I am going to look for a book that is pure enjoyment. I don't want to read about politics or the injustices of society or self improvement, especially not diet. I need to find the joy in words again.

I am thinking Piers Anthony.....that will be pun.

What do I believe?

I don't know the answer to this so I am going to talk it out. 

I have to start with who is my GUHP (God, Universe, Higher Power). 

I was raised to believe it was Heavenly Father and Jesus was the mediator. It turns out I was believing what I was told to believe. I thought I was Atheist for a big chunk of my life but it turns out that wasn't right either. I don't have the same GUHP as my parents or most of my friends. And it turns out that my GUHP changes based on my needs in life. I think that makes perfect sense but it is so contrary to how I was raised that sometimes it is uncomfortable. My GUHP had been the Earth for a couple of months. It has changed. That's how I know it changes. I thought maybe it was the Earth all along. I don't know. Maybe it was but it is not now. The Earth is very kind though. It is holding space for me while I embrace my new GUHP. I feel it is the Fat Happy Traveler Buddha. But I haven't embraced him yet. So it's kinda like the dynamic I grew up with but now the Earth is the intermediary. I have to bond with my new GUHP. I think part of that is acknowledging that I am not Buddhist. I don't need labels or spiritual rules. I just need a GUHP that is there when I need them.

What do I believe about souls?

I believe we all have a soul. Souls are important. We need to take good care of them.

What is my origin/creation story? Did/do we exist before/after life on this planet?

I don't know. I believe other people when they tell me their beliefs. My belief is I don't know. I was raised with the story of the preexistence in Heaven. I relate a lot of spirituality to University. I imagined that before I was born there was a catalog of all the human traits you could gain through experience on Earth. It didn't tell me what trials I would go through but I thought I could handle it all. I do this in real life when I make my schedule at University. I want to take all the classes. So, I imagined that I signed up for all of the traits/trials. I don't believe this is true anymore. 

The best story I have heard is that the atmosphere is made of the energy of all life that ever has been or will be on Earth. We are part of the atmosphere. Then we take a body. Then we return to the atmosphere. Living creatures with physical form can access the energy in the atmosphere at any time to help them in their daily lives. I like that story. That is why I chose the Earth as my GUHP. I am part of the Earth. I feel that. I don't want to be an astronaut. I need the Earth to live. I am part of the Earth and the Earth is part of me. It is a very important relationship in my life. I cannot live without the Earth.

Truly though. I have a very logical/spiritual mind. I don't know where I came from. Except that I came from my mother's womb and the seed that my father put in it. I am made of the energy and experiences and the DNA of all of my ancestors. I am connected to my progeny. I love life. Life is beautiful. It is ok that I don't know everything. 

I believe in Energy. 

My mentor, Kami Orange, once said..."If a story makes you feel better it is a good story." That is how I can embrace Spiritual Gifts and Entourage and all of this woo-woo stuff. I don't know how it works. It does make me feel better. So, even though someone in my head says none of this is real, I am  embracing it. After all, spirituality is all about believing. I believe in Faeries and Angels and Fat Happy Traveler Buddhas.

Keto is Not Working for Me

It kinda feels like this was an instantaneous decision. It was pretty quick but it took a few days. Here is how it went:

I guess I need to start with why I was doing keto in case you don't know. In January 2017 I was hospitalized for Lactic Acidosis from taking Metformin. For a few months I tried various Diabetes medications that I had bad reactions to. I ended up on insulin. My A1C went up to 9.1. I was seriously concerned for my life. So, in April 2017 I started Keto. It was great. My blood sugar dropped. My A1C dropped. I was happy and telling everyone everywhere to start Keto.

February 2018 was my best endocrinology appointment. My doc said that all of my numbers were good. He was happy, I was happy. He talked to me about how to adjust my insulin and that he wanted me to take Red Rice Yeast because I don't tolerate cholesterol medication. If you had asked me about Keto after that appointment I would have said, "Heck Yeah! Do Keto! It's awesome!"

I have been doing a lot of spiritual work. A side effect of that is attracting things that I need from unexpected sources. It is kinda cool. I also have to learn to be open minded to receive these things. I have an amazing friend in Sweden.

She saw a post I made a few days ago lamenting that I would not be a Granny fitness model. She contacted me and suggested I look in to the Medical Medium and a couple guys who created Mastering Diabetes. I really wasn't interested but I really like this friend so I checked it out. I told her I wasn't interested. I explained how bad my Diabetes was. She said she had a friend who has Diabetes and this has helped her a lot and asked if she could send me some articles. I said ok. They were actually YouTube videos. These are the links for the videos: https://youtu.be/thY5Ge5Cggo https://youtu.be/5KWAgKR9JBE I watched all 2 hours. The stuff made sense. They talked about the Keto diet and what is good about it. Then they explained that it works great in the short term but eventually it increases insulin resistance and causes malabsorbtion of nutrients. That made me think. I told my friend that I need to think about it and that I will let her know what I decide. I told her that it would be a polar shift from what I am doing now and that would be really hard.

The Medical Medium guy suggested drinking celery juice and someone recommended lemon water. I thought I could add those things. The Mastering Diabetes guy suggested starting with breakfast. He said to eat 4 fruits for breakfast every day. I REALLY miss fruit. So. I decided to make those 3 changes and think about the rest.

That was yesterday. (Sunday, June 10, 2018)

Today (Monday, June 11, 2018) I had an appointment with my endocrinologist.

 

I had been wearing a continuous glucose monitor for 11 days. I had labs drawn the same day it was put on. Today I got my results. My A1C had jumped almost a whole percentage point in 4 months! I went from 7.6 to 8.5. Just so you know the goal is to be under 6. He asked if I had been adjusting my Tresiba(long acting insulin). I told him I forgot I could do that. He asked if I had been adjusting my Novolog(short acting insulin). I told him I had. He asked if I was taking Red Rice Yeast for my cholesterol. I told him I forgot about that. He told me he was putting non compliant on my chart. Ouch! He told me he was doubling my high blood pressure medication and that my vitamin D was low enough that he wants me to start a prescription strength supplement. I was discouraged. I had just spent 18 days in Arizona and Florida! The valley of the sun and the sunshine state! I have to say though that his social skills have improved a LOT in the past year. He delivered all of this information in a kind manner. I noticed on my blood test that my protein is also low. Isn't that weird. I eat so much protein and my protein is low.

So, that confirmed for me that Keto is not working for me. That is frustrating because I have spent the past year learning how to cook and eat Keto. I am not going to change everything overnight. I will start with breakfast and then change lunch and then dinner. I will give myself at least a month to transition. I want to heal myself. I believe that there is some way to do this with food. I believe that my body wants to heal itself and that I need to give it the tools to do that. The tricky part is finding the right tools.

I bought the Red Rice Yeast and while I was at the Good Earth I met a lady that taught me all about CBD. I bought some of that too. I am open to new ideas. Wish me Health and Luck and Light on my journey.

An Amazing Day!!!

I wanted to call this the best day ever!!! but I have had so many of those that I think I maybe need to change my wording. haha

I was exhausted from so much travel and happiness. I had been traveling for most of a month to see family in different parts of the US. I was riding in the back seat of our explorer because the sun was too hot up front. I had been lying down because sitting up was too much. I got a call. It was my manager from work. A place that I hadn't been to in 10 months. I was so excited to hear from him! And this time I was able to hear better than usual. That was awesome! He was inviting me to eat lunch and go bowling with my team the next day. I was like..."Heck yes!" I knew I couldn't pick up a bowling ball but I could be there. He told me to call my leave of absence caseworker to make sure it was ok. I did. She said it was fine but to be aware that other people may have a perception that if I could go to lunch I could go to work. I told her that I wasn't worried about that because it was her that makes the decisions. Not them. Besides, she doesn't know my team.

When I got off the phone I told my husband. He was in disbelief. He told me I wasn't up to it. I told him that I knew that but I was going anyway.  I had to stop to go to the bathroom every 40 miles for the rest of the trip home.

The next day I planned every detail carefully. When I woke up I felt like it would be impossible to go. I rested and hydrated. I opted not to shower or put on makeup. I brushed my hair but that really just made things worse. I wore a long comfy dress, took a lot of water and powerade, mapped the location on my phone and headed out the door.

80 degrees feels like Dante's inferno to me. I am so glad that I have air conditioning and that I had the presence of mind to put the sun shades in my windshield the last time I had driven. It was an hour drive to get there. I listened to itunes and practiced singing La Vie En Rose over and over. Maybe one day I will get a video.

When I arrived I was exhausted. It was so hot! There was no parking at the restaurant. No disabled parking anywhere that I could see. I ended parking a few lots away and started my trip with my walker out of the parking lot and over the broken sidewalk. I arrived at the front door of the establishment winded. Walking slow has it's advantages. I could look at the different doors to determine where I should enter. I chose the one with the mat. It turned out to be the right choice. I opened the door and made my way in with my walker. I noticed a man at the end of the long hall. It was Jason! My friend! I was so excited but I couldn't make my feet move faster. He called out to him and I wished he would come closer. I finally reached him a little over half way down the hall. I hugged him. He said everyone wanted to see me. I told him that I needed to go to the bathroom. He pointed it out but said I should say hi to everyone first. He didn't know what he was asking but I followed him. He went around a corner and told me to wait so he could introduce me. I wish I could remember everything he said. I know he asked for everyone's attention and the roar of conversation halted. Eventually he said, "The Sooze" to which everyone whooped and cheered and clapped. I felt so loved before I even saw them. I walked around the corner and felt the love and joy and acceptance. I am an assembly empath which means that I feel the undercurrent of emotions in groups of people. At this moment it was a glorious spiritual gift. I was soon surrounded by people who were hugging me and telling me how happy they were to see me. After about four hugs I had to start sitting down between hugs. It was an amazing thing to be overcome by the energy of love. When they were done I went to the bathroom. I was surprised to find a perfect disabled bathroom with room to navigate my walker and do my business. The door wasn't too heavy so it was ok that there wasn't a button to open it.

I sat at the end of the table happily chatting with Nikki, Jason, Daniel and Jeff. I pulled out my phone to take pictures and discovered I had left it in my car. 😔 I ordered food and had fun. I then realized I was missing out on a bunch of people at the table. I moved to sit between Phay and Daniel. I chatted with the friends around me until my food came and then I quickly got tired. The table was picnic table style with no back. Brady came over to chat. Then I excused myself to sit in my walker. It's really a rollator with a seat. It has a back I can lean against. After I felt a little better I used my feet to roll down the side of the table and talk to more friends. Then I was exhausted. I told my manager/friend/kindred spirit that I wouldn't be going bowling. I asked Phay to box up my food. I said goodbye to everyone as they left for bowling. Nikki walked me out to my car. It turned out she was parked close by. She helped me put my walker in the car. I found my phone. We took a selfie. Then I drove home daydreaming about this blog post. Jim encouraged me to finish my book. He wants to know what happens next. As I write this I am loving people, life and the joy that is in it all.

What is a Good Day?

Yesterday at the infusion center the nurses kept telling me how great I looked and acted. It was hard for me to accept. But you know when people keep telling you that stuff it does improve your mood. Before I left one of them said, "You're smiling so you must be feeling good!" As I was leaving I wished there was a dance club attached to the hospital so I could go dancing for a minute. As I drove home (one nurse pointed out that I had put my walker in the trunk, drove to the hospital by myself, got the walker out of the trunk and walked into the infusion center all by myself.) Confidence by Demi Lovato came on and I partied a little bit in my car. I even shoulder danced a bit and daydreamed that Justin Timberlake saw me bopping my shoulder and started a conversation about me being a dancer. I have a very active imagination. I had listened to one of his songs on the way to the hospital so that probably had something to do with his involvement in my daydream. By the time I got home I was getting tired but my high hadn't ended. I walked to the mailbox without my walker! When I came in the house my husband remarked that I looked like I was doing well. I told him he must be right because the nurses thought so too. Instead of going to bed at 2pm I stayed up and ate something and watched TV with him for a little bit. I decided it was time to reevaluate what a good day is for me.

When I was a little girl most girls wanted to be teachers and nurses. It was the 1970's so when someone asked what a little girl wanted to be she didn't have a lot of options. I remember thinking I didn't want to be either of those things. I talked to my mom about it and she told me that I wanted to be President of the United States! I beamed. She was right. I was going to be President of the United States and I was going to be the best President of the United States EVER! I tell you this so you know something about my personality. My life took a different path. I hate to tell people this but I still haven't become President of the United States and it is unlikely that I ever will.

For me a good day would be waking up, showering, fixing my hair and makeup, preparing healthy food, going to work, being the most productive member of my team, celebrating someone's birthday or having a team potluck, having lunch with a friend, doing some volunteer work, listening to a self help book during my commute, attending college after work, coming home to play with my grandchildren, spend time with my husband, talk to one of my kids, practice an instrument and a new language, get ready for bed, sleep 8 hours and start again in the morning.

Now you understand why often times in the past year when my husband would say, "You look good today." I would get defensive. In fact, just 2 days ago, before bed, I was pouting to him. I said, "I wasn't very productive today." He said, "Yes you were! You made a recipe and you did dishes." I feel like he said something else but I don't remember it. In my mind I reminded myself that I need to change my expectations and I replied, "You are right. Thanks."

Yesterday I woke up feeling yucky. Often when people ask me how I feel I don't know what to say. Yesterday I told my son in law that I was better than some days and worse than others. But yesterday turned out to be a good day. I took a shower and went to the infusion center all by myself. That was my productivity. Not exactly President of the United States but I ended my day happy. That is important. I need to remember to judge myself not by how much I do but by whether I did my best.

I have this idea that because I don't go to work that I have time to practice 3 instruments and 8 languages every day along with cleaning and organizing my house, doing some dancing and preparing all of my meals. If I could do all of that I could probably go back to work. I need to be nice to myself. I know I would not put all of this pressure on anyone else. It's time to be nice to me.

Goal number one: Get my smile back. When I was working my friends called me sunshine because I was always smiling. Maybe if I lighten up the pressure I can find my smile again. Disabled people are allowed to smile. :)

Tracking Tracking Tracking

I do not like tracking. It doesn't matter what I am tracking whether it is symptoms or calories. I just don't like it. Even though I don't like it I am learning that it is important. I tracked my symptoms for a couple months last year and it really helped. I was able to refer back to it when doctors asked me questions. I don't know about you but when they do that to me my mind goes blank. It is just contrary to my personality to be consistent about anything. I do eat every day and sleep every day so that is something. Right? I will just build on that.

What I really need to start tracking is food. I have heard that the key is to track it before it goes in your mouth. Ugh. That used to be impossible because by the time I realized I was hungry I was starving and would just eat anything in sight to feel better. Since I have been doing keto and getting better at it I no longer have this issue. I have gotten better at preparing recipes to add diversity to my diet. So, I think it is a reasonable time to start doing this.

Why is this important? I am not losing weight. I believe that it is because I am eating too much. I know my diabetes doesn't help but I think it must still be possible so I am going to try. I will also see my macros to determine if something needs to be adjusted.

Wish me luck!

Depression Strikes

I'm really trying to stop asking why. Over the past year I have learned that doctors don't have answers to every little weird symptom that I experience.

Right now I am depressed. It's bad. When I start feeling that way the ugly thoughts come in. Nobody loves me. Nobody wants me around. Yesterday my husband told me that the way I have been talking to him makes him feel bad. He needs me to be nicer. It's good that he pointed that out so that I can make an effort to be kinder to him. I think that's a symptom of the depression. It is harder to be nice when I'm depressed.

I can't help but wonder what brought this bought of depression on. I saw my endocrinologist for my Diabetes a couple weeks ago and he smiled and told me I was doing great. That is so nice. I have a bad feeling associated with endocrinologists because they usually tell me to exercise more, change my eating habits and take more medication. They seem to do it all with a scowl on their face. It really feels like they think that anyone that has Diabetes has it because they signed up for it. Like, we went to McDonalds and ordered uncontrolled type 2 Diabetes because we get some sort of pleasure from our disease.  I hope that is not really their thought process but that is how they make me feel. So, on the rare occasion when I see the doctor and he is happy with my progress I feel like I have won the lottery.

How do I control my Diabetes? I eat a low carbohydrate ketogenic diet. This is not easy. I am a picky eater and I am easily bored with food. That means that I spend most of my energy on food. I look for new recipes, I shop for food, I prepare my food. I also inject 2 different kinds of insulin. Long acting and short acting.

Why am I going on about Diabetes when I started talking about Depression?

Normal glucose readings are between 80-100. My diabetic goal is between 100-120. This morning my fasting glucose was 198. I haven't been below 160 for a week. Yesterday it was 218. I think this is causing my Depression. Blood sugar changes can cause mood swings.

I recently learned how Insulin works. It takes the excess sugar(glucose) in the blood and turns it into fat. So, 4 times a day I give myself and injection to make myself fatter. That makes me so sad. I am already overweight. I can barely exercise. I push myself as much as I can. I don't eat sugar. I am still gaining weight. I cannot quit eating. Today I am up to 199.4 pounds. I am 5'9" tall.

What has caused the Diabetes to flare up? I have never heard of anyone talk about a Diabetes flare. I really think that's what this is. I have Sarcoidosis. Are there granulomas in my Liver or Pancreas causing this? I have Dysautonomia. Is there something going on with my nerves in these organs that is causing this? I don't know the answers and I don't know if anyone does. I have Small Fiber Neuropathy. Is there any relationship between that and Diabetes?  When I start down this train of thought I daydream about being a research scientist and finding answers.

There have been storms. Winter finally made it to Utah this year. My husband had been talking about removing my snow tires because it had been so warm. Now, he is thankful he didn't. Can weather cause a Diabetic flare?

Well, I don't know the answers but I know I am depressed.

So, what I can do is think of things I am grateful for. I have a lot of people that love me. I have been happily married for almost 26 years. My husband is my best friend. I have 4 beautiful children who love me. I have 2 amazing daughters in law that love me. I have a son in law that helps to take care of me. I have 9 fabulous grand children and 2 more on the way. One of my grandchildren is a 2 year old grandson who loves to play with my Darth Vader and Storm Trooper toys. He holds them and says pew pew and laughs. I am smart. I look young. My husband thinks I am beautiful. I also have parents, siblings, in laws, friends, and they all love me.

Today I will force myself to sing a song. I have had some requests. I know there are at least 2 people who enjoy me singing on Facebook live. Singing with Sarcoidosis. Wouldn't it be great if I could cure Depression and Sarcoidosis by singing? hahaha

To anyone who took the time to read this - Thank you!

January Has Been Hard

Life with chronic illness is full of ups and downs. January started out great. It lasted for 3 whole days. Then it went on a slow decline right up to the end. I just now realized that it is over. Today is February 1st. I was hoping that things would start going up. It hasn't happened yet.

I had two new year's resolutions. One was to write a novel. I was going to write 90,000 words in 3 months. The second was to record a Facebook live of me singing every day. Those are pretty ambitious goals. I stuck to them for 3 days!

What did I learn?

I need to take words like never, always and every day out of my vocabulary. I am not an every day kind of person. Even if I were there is no guarantee that I would wake up feeling well enough to sing and write 1,000 words each and every day. And guess what. I haven't felt up to either of those things since January 3rd.

I don't like recording live. I like to edit my mistakes.

January 3rd was also the last day I wrote a blog post. That post was published on www.dysautonomiasupport.org/blog That was awesome.

Last Saturday I received a letter telling me that my securities licenses had been terminated by my employer. That means that I have 2 years to go back to work and have them reinstated or I will have to take the exams again. Those tests are REALLY hard. I know I could pass but still. It is one more thing that I have lost to my illness. Logically I understand. I work for a business and business is about profit and maintaining my licenses is expensive. I was licensed in all 50 states and the US territories. That is a lot of money. Really, they are taking very good care of me. But....it still hurts. I would like to imagine my desk waiting for me encouragingly to get well. I like to imagine that the world stands still and cheers me on in my recovery. But, that is not reality. The stock market will continue and someone has been hired to take my place.

I finally got a prescription for IVIG. That is the next step in my search for miraculous healing. It was a lot of work to get it and then to get it to the infusion center. Then there was another communication problem. The hospital didn't submit it to my insurance for approval until I asked for the status. So, I will not start my treatments on Monday. I'm trying to remind myself of all the things I have to be grateful for. I had to call for a nurse (I'm in the infusion center now, getting fluids) to bring me a box of tissue and turn on the air because I was crying ugly tears and I overheated after calling the insurance company to see if they could expedite it. They said I would need to have my doctor fax the request to have it expedited. Then all the self doubt crept in. Can you believe I question whether I am worth having my treatment expedited? I still judge myself for not being able to go to work or climb a mountain. "Come on Susie, suck it up," I say.

What is IVIG? Intravenous Immunoglobulin. When I was a teenager I used to sell my plasma to buy diapers for my babies. Well, the people that sell their plasma are actually making it possible for people like me to receive IVIG. The immune sells donated are going to be injected into me in hopes of strengthening my immune system. I gave, now I will receive. It is very expensive. I have good insurance. (Something to be grateful for.) And they are really good about approving the treatments I need. I found an article about how IVIG can treat Sarcoidosis and Small Fiber Neuropathy. Those are both conditions that I have. I gave it to my doctor and that is how we got to this point.

There are risks involved. It can cause a headache so bad that it requires hospitalization. It can also cause stroke, heart attack or infection. But I am hoping for the best. My hope outweighs the risks.

I started keto again on the 19th. I was up to 201.8 pounds. Now I am at 196.6.

Healing - What does it mean?

Hola mi gente! (hi my people)

I am in a facebook group for writers who happen to have Dysautonomia. You wouldn't believe how healing that is. Today there was a prompt:

"What does healing mean to you? This can be physical, emotional or any other type of healing associated with your #chronicillness. What did it mean before compared to after your diagnosis? How have you played a role in your own healing? Are there others that have helped you? What might help you in this journey that you still desire?"

Wow! This is a timely prompt for me. Healing. I am an extremist in my thinking. I am working on this with a therapist. How does that apply to healing. Well, either you are sick or you are completely and totally well. There is no in between. It's kinda funny if you realize that I have been chronically ill pretty much my whole life. When you are chronically ill there is NO completely and totally well. In fact by my definition you'd have to pretty much be Superman. So, no one really qualifies. Do they?

My resting heart rate.

This year has been a year of extreme healing for me. I started it with a goal of using my time off at work for only fun stuff. I was not going to use it for illness of any kind. I ended the year on total permanent disability. Um, that goal didn't go as planned. New Year's Resolution Epic Fail!!!!

How is that extreme healing? You ask. I am no longer in denial. I used to notice that I got sick more often than everyone else and blame myself. "I should go to the gym more." "I should take another supplement." "I should change my mindset." "I should eat healthier." None of those are bad suggestions. But none of them could change that I am ill.

This is me wishing I was with my friends at the Pride Parade.

This lesson did not come easy. I spent most of 2017 very angry. I also learned that anger is not a bad thing. Anger, for me, has been very healing. What can be bad is how I choose to act upon my anger or what I choose to do with it. But if my anger is to give me strength to get through an extremely difficult year, then bring it on! Anger gave me power. It gave me an extra surge of adrenaline to get stuff done.

Today I got angry. I will tell you why. I spoke with my cardiologist's office about my next appointment. They said we need to wait for the results from the cardiac MRI to determine if I can still see my cardiologist or if I need to go to Heart Failure. What the crap?! Heart Failure?! Really?! Who would name a department that?! After I got off the phone I paced and ranted. After a bit I was pleasantly surprised that I was pacing and ranting. That is not something I usually have strength to do. See! Anger is not all bad. If I get an appointment with Heart Failure I intend to have a frank discussion with them about their name. How about Advanced Cardiac Specialists? Or Hopeful Hearts? Words have power and those words sound like they have admitted defeat.

The greatest healing I have done this year is to allow myself to grieve about the loss of my old life and to find pleasure in my new life. That does NOT mean that I want to be ill. It does mean that I have accepted it. There are good things that have happened. I have found time to write. I started a novel. I am SO excited. I am singing. My voice is not what it once was but it still brings me joy so I use it and I share it on Facebook Live. I have made new friends that I never would have known if I were healthy. So, yes. I have healed. And, I have changed my definition of healing.

Me lying in the back of our Explorer because traveling is hard but sometimes it's worth it.