Category: Blogging Adventures

Harsh Reality of Sarcoidosis

As I sit here at my kitchen table crying, I have just submitted my resignation letter to my employer that I have been with for the past 13 years. Never in my life would I have thought that at 36 years old, I would no longer be able to work. This disease has taken so much from me over the past 4 years and yes, I am down right angry about it today. I’m angry, sad, hurt, confused, and jealous of those that are completely healthy. I had to go to the hospital yesterday and have lab work done because I have felt like absolute crap the past several weeks. And for those that don’t know, I had gastric bypass December 12, 2016 and have lost a total of 114 pounds thus far. To me, that’s wayyyyyyy too much weight for me to loose. My goal was to get to 150 and I am down to 112 pounds. I’m scared yall.

So now that I limit myself to being in the public with all this flu mess going around, I have started to gather recipes for baking. I use to make and decorate cakes on the side and can no longer do that either because of this darn disease. BUT, I’m not letting this disease take my love for baking! I have decided to make cupcakes now. They don’t take long to bake, are very easy to decorate, and I can come up with my own flavors. I have to find something to do that makes me happy.

I have enjoyed this blogging journey so far. I find peace when I can write about how I feel about certain things and how I wish more people understood that just because a disability isn’t visible on the outside, doesn’t always mean anything. I guess now it’s time to focus on me, and how to survive with this disease and all the crap that comes with it. I won’t let the devil win this battle! Not today Satan!

Snowflake Family

So here in the sunny south, we hardly ever get snow. Well, this past Wednesday, we got almost 6 inches here in upstate SC! The kids were elated that they were out of school and it was snowing! Me, on the other hand, was wondering how long the snow was gonna last and how long they would be out of school!

This snow was special to me as I had just posted about snowflakes, what they mean to us sarcoidosis warriors. and how we are all different in our own special ways. So I braved the cold, went out on the porch, and took some pictures with my iPhone 7 plus. I tried my best to get a good picture of a real, close up snowflake with my phone. I didn’t think I had captured any good photos, but surprisingly, a few turned out very good!

As I look at these pictures, I am reminded of how far I have come since November 2014 when I was diagnosed. All the surgeries, medicines, hospitalizations, doctor visits, etc. are overwhelming at times. I am so thankful for a lung doctor that understands my disease, frustrations, and listens to me whine and cry about this disease and how it’s not fair that at 36 years old I can’t work, can’t run, and have to take several breaks during the day just to make it to bed time.

Sometimes I feel like a lost snowflake in this journey of sarcoidosis. Everyone is so different and we all have so many different symptoms, but some have like symptoms. But just like snowflakes fall together, we as sarcoidosis warriors stick together just like snowflakes. I encourage you all to reach out to each other for uplifting and positive thoughts as we press on in the journey of sarcoidosis!

Snowflakes

Just a few fun facts about sarcoidosis for y’all on this chilly Monday morning! The snowflake is the symbol for those of us fighting sarcoidosis. Sarcoidosis is like a snowflake because patients have so many different symptoms. No snowflake is like the other; they are all different shapes and sizes, much like us fighters. Purple is the color of the sarcoidosis awareness ribbon. Sarcoidosis is a multi-organ disease. However, I only have it in my lungs at this point. I have pulmonary sarcoidosis that limits my ability to be able to walk long distances, run, and sometimes just breathing is difficult without pain. When it’s so cold outside, breathing the cold air in my lungs makes me hurt.

So, on this chilly Monday morning, I will be doing things in shifts. Fold laundry, sit on couch; wash dishes, sit on couch; make bed, sit on couch…I miss the days when I could do all of these things in an hour and go on about my day.