My First Autoimmune Diagnosis

My First Autoimmune Diagnosis, this was not the first illness the pituitary tumors were.

Writing about yourself and letting other people, whether they are friends or strangers, read about your life and publishing it on social media is one of the hardest things to do.  I am a firm believer that if my story can help someone else out, I am all for it.  I am convinced that when a person shares their personal story without becoming affected and upset, it shows that they have done the work.

I am certain that December 30th, 2016, was the beginning of my first journey with an “autoimmune disease” and I did not know it at the time.  It happened during the holidays. I was staying with my girlfriend at the time, and I was not feeling good.  She was working as a patient administrator at Lewis Gale which was a smaller ancillary ER.  I called her to see if they were busy because I truly was not feeling well.  She told me to come in and she will ask if I could be looked at right away.  I arrived at the ER and was taken back to a room, and I was thinking sarcastically I would have to wait 30 hours before someone came and saw me.  The first thing that was done was lab work to see if there was anything abnormal.  A CAT scan was ordered because my labs showed that my white blood cell counts showed an infection. The doctor could not see anything wrong in the CAT Scan and said it was an infection in the lymph nodes.   He prescribed antibiotics and sent me home.  I decided to go back to my apartment in the city because I know myself, I am not fun to be around when I am sick.  When I woke up the next morning, the swelling doubled in size.

The start of my autoimmune disease

As I mentioned in my first blog, my sister and I were estranged, but still talking.  She was the first person I called letting her know I was going back to the ER. I sent a picture to her of what I looked like before going to the hospital.  Of course, we both panicked and freaked out because our mother had passed away from Salivary Gland Cancer in 2004.  The swelling was on the same side as my mother’s and that was the first thing that popped into both of our heads when this happened to me.  I went to the Carillion Hospital ER in Roanoke.  I was admitted immediately to be monitored. The biggest concern was that the swelling would cut off my ability to breathe. The ER doctors agreed with the medication given at the other hospital, but they felt it should have been administered intravenously at a higher dosage.  I am thinking to myself it is January 1st, 2017, in the hospital, gee what a great way to start the new year!!  The doctors did not know what this was or what caused it. I was told to follow up with my primary care physician and he was just as befuddled as everyone else was.  There was no explanation as to why this happened.

The last “serious” medical issue with me was in 2011, I had a third surgery to remove a tumor that was growing in and around my pituitary gland.  To this day, I am extremely paranoid when something is wrong with my head or face because of my past medical history and with my mother passing away from cancer.  I must give my sister credit.  Regardless of what was going on with us, she always pushed healthy eating habits on me.  I still did not believe the “theory” that “food is everything” to the body.  I was still losing weight because of my issues with being “pre-diabetic”.  I was eating healthy, but I was STILL consuming junk food, like potato chips and coke or milk into my diet when I was stressed.  My sister had a hunch that I was still cheating even though we were working on weekly menus and documenting weight loss. 

Looking back, it is obvious that I was not truly serious about the lifestyle changes, but I was just going through the motions.  This to me, is the same thing as “seeing the potential in someone or something”.  This way of life can be dangerous mentally when you are trying to grow and make changes.

Once the scare was over, I settled back into my “I am immune to anything” routine.  As time went on, these health issues led me on a journey that prepared me for the changes that were yet to come…

The Begining Of My Journey

Late bloomers truly do exist.  Discovering who you are and what you want at 49 years old was a huge milestone for me.  After leaving Florida in 2001 to move back home to Michigan to take care of my Deaf mother who was diagnosed with Salivary Gland cancer after her 3rd surgery, with the final lab results being malignant. When my mother passed away in 2004, it was a life altering and growing experience that changed the core of who I was.  Fast forwarding to 12 years later of just existing, becoming restless, and wanting more, I relocated to Roanoke, VA at 49 years old in 2016. I took a management job in the automotive industry.  I was excited and scared at the same time because I have always had my sister or a friend living with me. I was never on my own with anything.  Joy who was my last roommate in Michigan and is like a sister from another mister to me; I will never forget her words when I expressed my concern and worry about what will happen if it doesn’t work?  She replied, “What if it does?”  I took that comment with me and set off on my journey to Roanoke, VA.

The first day I started my new job, I got rear ended.  I was thinking, ok Lord, if this is what you have planned, I want to move back home.  After that mishap in the morning, the honeymoon phase began, and it was awesome.  I found all the necessary doctors and dentists that someone needs when moving to a new city.  As strange as this is going to sound, I was elated and hit rock bottom at the same time.  I was at my heaviest, weighing 309 lbs. and my A1c was around 10.2. The lab results were the start of taking 500mg of Metformin.  The doctor mentioned that I needed to lose weight and change my eating habits.  He referred me to a nutritionist and requested a follow up appointment in 3 months.  I was overwhelmed with everything after my appointment.  I had NO clue about food or how to “really” cook. I always had someone else cook for me. I went through life with the mentality that I don’t need to learn.  I spent several months trying to make heads or tails trying to decipher the food plan that I was given by the nutritionist with very little success and a lot of frustration. When I went back to my 3-month appointment with the Dr, it was awful.  My labs showed my A1c’s went up to 11.8 and my weight increased to 315 lbs.  I became more depressed and frustrated about my weight. I had another follow up appointment in 3 months and had the same results. There was no change in the sugars or weight. The doctor increased the Metformin to 1,000 mg twice a day. He also wanted to give my body time to adjust with the increase in medication and continue to work on weight loss.  We scheduled a follow up appointment in 9 months. I felt like I was on a roller coaster ride for the next several months with life in general. When I say I was a late bloomer, I mean I was “a late bloomer”! I met someone that fall. With managing on my own living in a new city, adjusting to a new job, needing to focus on my health, and meeting someone new for the first time, and experiencing the newness of being in a relationship; it was extremely overwhelming. I had no idea what to do about my health and where to start, so I called my sister.

My sister is a fabulous cook and with her love of cooking and nutritional knowledge of food it was the logical choice for me to ask for help. Without going into full detail, our relationship was rocky, and she still helped me.  She asked me to forward everything that the nutritionist gave me. After a few days, she was able to create a simpler food plan. Her advice was to “keep it simple”.  The recipes and food menus gave me ideas on what food to buy, plan the week, and how to cook the food. Her simple recipes and suggested food portions worked.  I started to slowly lose weight.  By the time I went back to my 9-month appointment I had lost 63 lbs. and my weight was 252 lbs.  My A1c dropped from 11.8 to 8.2. A vast improvement, still high, but much better.  I was elated and so was the doctor. 

With my cocky attitude and mindset that I always had, I stopped following what my sister had taught me and went back to doing things my way.  Life got difficult.  I had broken up with Nicole and moved out to live with Lisa and her family.  I stopped following the suggestions my sister gave me and just ate whatever I wanted to eat. The weight ballooned back up to the 290’s range.  Usually, people lose weight when they break up or go through periods of stress in their life because they do not eat. I am the opposite of that. I am a stress eater. After getting my life balance back and getting over the breakup with the “first love” of my life, my weight fluctuated between 280 to 290 lbs. for the next couple of years.  

After the breakup, taking time to heal while living with Lisa and her family, I learned that I still needed to work on who I was. I had the chance to meet more people. Lisa took me out with her to different places, she showed me what it is to meet new people. I was going through a phase of “I don’t care”, and meeting other people and different women, I met a friend and moved into the mother-in-law suite in the basement of her home. While living in this place, I developed some serious health issues and landed up in the hospital for one week. I had issues with breathing and my lungs.  My pulse ox had dropped to 69 and stayed in the 80’s range. After a series of tests and a biopsy, there was no actual diagnosis, but now I was diagnosed with an “idiopathic” autoimmune disease on top of my diabetes.  After being discharged from the hospital given a 6-month prescription of prednisone to help with my lungs, keep in mind the prednisone does major havoc to the diabetes and weight. I started with 40 mg and each week decreased dosage and worked my way down to 0 mgs at the 6-month mark.  My sugar was through the roof and my weight went back up over 300.

The next direction slowly prepared me for the continuous changes I have been making since the hospital scare and become serious about my health… 

Psyllium Husk

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When adapting to a keto lifestyle, carbs are minimal. Using Whole Psyllium Husk has many benefits.

Psyllium Husk has a few benefits. It is used as a binder for Keto, Paleo baked goods such as bread without all the eggy taste that often happens in Keto baking. Psyllium Husk is remarkably high in fiber that can help remove cholesterol from the body and keeps us regular. Keto diets can make us constipated. There is no flavor or grainy taste with Psyllium Husk. One (1) tablespoon has five grams of carbs and five grams of fiber. Use this product as a binder for vegan and keto breads and other baked foods.

Check out some Keto wraps and breads tried and tested. This is a delicious alternative to high carb breads without the additional carbs.

basic chaffle recipe

This versatile recipe has many purposes. We use this to make breakfast or lunch sandwiches. The basic ingredients plus a couple of add-ins make these chaffles fun to eat and nostalgic in terms of sandwiches and fast-food breakfast eats. This is our favorite kitchen gadget, Dash Mini Waffle Maker.

Basic Chaffle Recipe

Makes (2) Chaffles. Preheat the mini waffle maker until hot or the light turns off on the lid.

1 egg

1/2 cup shredded mozzarella cheese or sharp cheddar cheese

1 tbsp almond flour, we like this brand Bob’s Red Mill Almond Flour

In a small cup or bowl, crack one egg and discard the shells. Add the shredded cheese of choice and the almond flour. Mix very well with a fork. lightly grease the mini waffle maker with a pastry brush and olive or avocado oil on top and bottom plates. Pour 1/2 of the mixture in waffle maker, spread well with fork and close the lid. The waffle maker will cook the batter in 3-4 minutes. Remove cooked chaffle with a fork and repeat the process with the other half of the chaffle batter. Assemble your preferred sandwich.

why keto?

We are huge carb-aholics. We love all things carbs. Bread, desserts, pasta, potatoes, fried foods, junk foods, fast foods, starchy and other high carb foods. Both of us are type 2 diabetics, overweight, and Pam has multiple sclerosis. We are sick and tired of being sick and tired. Keto has helped us control our carb addiction and improved our A1c’s. We are slowly losing weight too. The Keto plan is low, or no carbs and it does help manage diabetes and other health crap like fatigue, moodiness, brain fog, and joint pain decrease. Big bonus there.

Come join us on our journey. We will be talking about FOOD, cool kitchen gadgets, good reads, self-helps, favorite products, and Karen might share a picture or two of Louie and Lestat the kitty cats.