Lauren's Sarcoidosis Medical Fund

You can watch our story here instead of reading if you want. This is our Youtube Channel we talk all about the journey here.

https://www.youtube.com/playlist?list=PL91Nk6WUVlTfiRGa3gbtbc5jYrvgiZsku

As many of you know I was hospitalized over the summer and went through quite the traumatic ordeal. After lots of tests we finally discovered I have a rare auto-immune inflammatory disease called, Sarcoidosis. 

You may have heard of this disease because Bernie Mac had this and died from complications of Sarcoidosis.

There is currently no cure for this disease. Often, people with this disease go through treatments that cause them to feel worse in many other ways. While they do some what help, they don’t cure us.

The disease presents in many different ways, but most commonly it will present in the lungs. It’s hard to explain to others that don’t have this disease how it effects us. Also, we refer to this as one of the “Snowflake” illnesses because it can present different in everyone.

For me, I currently have an “INNUMMERABLE” amount of nodules filling my liver, spleen and bone marrow. They also just found more nodules filling my reproductive organs and they suspect it's in my eyes & brain. (I'm having further scans to find out for sure)

My liver and spleen are also 3x the size they should be. They are essentially squished in my body. 

I have massive inflammation in my joints. My abdomen area is very sensitive so I have to be very careful with what I do. I get these pains in my abdomen that feel like appendicitis. My lung function is also down to 46%. So, just walking across the room is more difficult. My eyes have swelling and I can only wear my contacts for short periods. I have been getting migraines so they are concerned it’s in my brain, which is called neuro-sacroidosis. This is causing my limbs to go numb and many other symptoms.

I get tired doing simple tasks like taking a shower. It’s not the normal tired you think of. Imagine you have the flu and you run a marathon while having the flu. That is the type of exhaustion we (sarcoidosis patients) feel. But, we have to keep going on with our lives. This is a key part to figure out for us.It is miserable to be stuck in our homes in bed. We have to learn how to fight to keep going.  

A big challenge for us with this disease is finding a medical team that can figure out what we have and that is knowledgeable enough to treat us and that will fight with us to combat this disease.  After lots of searching and fighting to get in quickly we found a clinic for Sarcoidosis in Charleston, SC about 2 hours from where we live. All my testing, treatments, and appointments to check up on my progress must be done there.

Before all of this Jeffrey was working 2 jobs & going to school. Through this process Jeffrey had quit 1 of his jobs. We barely made enough to make ends meet, but it was too much if I wanted to be on Medicaid and not enough to pay for insurance! We don’t have a choice on that because I have to have insurance or else I won’t get treated. He also needs to be here more because many days I am too weak to even go to the bathroom alone. So, because I was the parent staying at home I can’t do that all the time anymore. Simple tasks like going to the restroom require assistance.
Since our income dropped significantly we are drowning. Not only with just our everyday bills but now we have bills coming in from doctors who don’t accept Medicaid. We have to make trips to Charleston and pay for medicines that aren’t covered by Medicaid. The list just keeps piling up and it’s a massive added stress on us both.
Many days I feel like a burden and I feel at fault for putting us in financial strain.

So, we are reaching out to our loved ones, our friends, and our families friends and loved ones in hopes some might be willing to help.

I know it’s a time where many are struggling themselves so I know this is a big request and I want to thank anyone willing to help and all those that share this with others.

We read the comments, we see the facebook shares everytime we have an appointment or I’m sick, or just having a rough day. I feel all the prayers and it helps. I thank you for each prayer and ask for you to continue.

This is a life long journey we will be on with treatments and dealing with this illness. So, we are thankful to have so much support along the way.

We recently got some good & bad news at the clinic appointment we went to. We’ve made a video detailing everything that was said and we are working on getting it posted to Youtube. We will share the link here as soon as it’s uploaded.

Thank you so much. We send you all much love & peace as well.