I was talking to a friend yesterday and I realized that very few people here, in Colorado, know much about me…especially my chronic illnesses. In fact, I have very few friends that know my whole story. People know bits and pieces, but…well, I’m kind of private. But I want people to know my story. I want them to know what I deal with, what I go through, and to know that if they’re dealing with anything, I’m here to listen. I understand what you’re going through.

So here it goes…

I have a laundry list of chronic illnesses. I joke that I collect them. The rarer, the better! So where do I start?

Well, let’s start with the one that doesn’t even have a name. It’s caused by a gene mutation. My muscles will spasm randomly. The muscle fibers will twitch individually so it feels like spots in the muscle are being pinched by tweezers. Along with this comes hyper-reflexia, which is overactive, or over responsive reflexes. So when I go to the doctor, and he uses the little hammered to hit my knee, my leg doesn’t just twitch, it full on kicks. In addition, I get migraines, tingling in parts of my body (hands/arms, feet/legs) and occasionally I’ll have some issues walking. These symptoms are indicative of an upper motor neuron lesion, caused by multiple sclerosis. However, after multiple tests, the doctors have never been able to find lesions, so they don’t know exactly what’s causing it. My youngest two children also have the same issues, and neither of them have lesions that their doctor have found.

Right hand being contracted due to muscle constriction in the right arm.

The next chronic illness is loin pain hematuria syndrome, LPHS. This disease is also extremely rare. It only occurs in approximately .012% of the population. Let me break down the name, and then I go in to further detail. Loin is a medical term for kidney. Pain is…well, hurting, lol! Hematuria is the fancy word for blood in the urine. A syndrome is a collection of symptoms. LPHS isn’t just a high school in Colorado. Its an extremely rare kidney disease, which causes extreme pain, blood in the urine, kidney spasms, ghost UTIs (UTI symptoms without the growth of bacteria), and low grade fevers. These symptoms started when I was 12 years old. Doctors had no idea what was going on, or what would cause me to randomly pass out from extreme pain. It took 24 years for me to be diagnosed.

Loin Pain Hematuria Syndrome causes blood in urine

Link 1 Link 2

Since we’re talking about my kidneys, let’s talk about the other two issues I have with my kidneys. Chronic kidney stones, and chronic kidney disease. I am, as of writing this, in Stage 3a kidney failure. I’ve been here before, and my kidneys healed themselves. (God works miracles!) The chronic kidney stones are a totally separate issue. Urologists have studied me and tried to figure out why I pass so many stones. No one can figure it out. I’ve tried all the remedies, and at this point in life, I have just come to accept that this is how it is. I pass, on average, four (4) kidney stones a week. The largest I’ve passed was 11mm, and the smallest were the size of a grain of sand. I call these kidney dumps. Usually it looks like I just threw a handful of sand into the toilet.

The last chronic illness I will go (somewhat) into depth about is my gastroparesis. My paralyzed digestive tract. The pylori valve at the base of my stomach doesn’t function properly. As such, certain foods upset my stomach, and I can’t digest them. They sit in my stomach and begin to rot. Without going in to too much detail, if it can’t go down, then it comes back up. Before moving to Colorado I was put in hospice. I was told I wouldn’t live to see Christmas 2017. (HAHA, shows what doctors know, lol!). I lost a lot of weight. I hadn’t eaten in almost 8 months. I weighed 96lbs when we moved to Colorado. I had a PICC line. This is sort of like an IV that goes into your arm by your bicep, and is threaded into your heart. Every day we would start TPN (Total parenteral nutrition) and for 18 hours a milky white liquid was pumped into my body feeding me 1800 calories, vitamins and minerals. Every day I mixed my TPN (because you have to put some of the vitamins and minerals into it), and every day I hung it on my IV pole, connected it to my PICC line, and started the pump.

There was one point where I took my entire days worth of meds (most of my meds were oral with small sips of water, or would dissolve in my gums). I took them as directed. And because of my stomach I overdosed. They sat in my stomach all day long, and when I took the Marinol (synthetic THC) my stomach relaxed and all of my meds got digested. I began to overdose. My husband drove me to the ER. It was that night I decided to move to Colorado. I quit fighting it and fighting my husband. (More on that later!)

So I have several other chronic illnesses as well. I show signs of Ehlers Danlos, although I’ve never been tested. I can easily dislocate joints. I have PCOS (polycystic ovary syndrome.) I have fibromyalgia. I have arthritis. I have allergies, chronic sinus infections, and ear infections all stemming from my birth defect. (I was born with a cleft lip.) And lastly, I have PTSD, anxiety, and depression. (Not from medical issues. Maybe I’ll tell that story one day.)

Why am I telling you all of this?

Well, there a few reasons why I’m telling you about all of my chronic illnesses. Firstly, so if I’m having a rough day and I’m more quiet then usual, or I cry during or after a workout, you know that I just need a little grace. Secondly, so if I give you encouragement during a workout, you’ll understand that chances are I’m vocalizing what I need to hear in that moment as well. There have been moments in workouts where I have closed my eyes, and started counting. I do this to focus on the seconds, and push myself to the very end. And lastly, so when you’re having a rough day, or your having health issues, you know that you can come to me, because I know what you’re going through. I’m very empathetic and can sympathize with you. So if you ever need a friend, or someone to pray with you, or for you, I’m here.

And now you know a little bit about me. The next time I write an “About Me” post, I promise it will be fun stuff…like about my journeys as a surrogate, or planning flash mobs (which is why I have a “lifetime ban” from Dillard’s, lol!) Oh, or the time I was declared dead by a hospital in a weird mistake!