This flare-up feels like I am going to war

Posted April 12, 2021

Katie and her family hug and smile at the camera.

Hello, my name is Katie: wife, Mom of three, and EDS warrior.

All of my life I felt like a freak. I always knew I was different. I can remember being sixteen working at a small local restaurant. I had a regular customer who was in his eighties. I would complain to him often about how bad I hurt. He would reply you don’t know pain just wait until you are my age. I would just smile and walk away. I couldn’t even imagine how I would feel by the time I was his age.

I was 27 and pregnant with my third child when I finally reached a diagnosis.

About four years ago my sister lost her eyesight out of her right eye. She could see light but it was extremely painful. Faithie began to bleed out her eyes, ears, and nose. She wore an eyepatch and spent all of her time in the basement due to it being dark there. My Mom and Stepdad took her all over trying to get answers as to what exactly was going on including John Hopkins in Baltimore. None of the doctors could figure it out.

Finally, WVU did bloodwork and tested for all of the genetic issues. Faith was diagnosed with vascular EDS (vEDS). The geneticist told my Mom we should all be tested.

Being diagnosed with EDS was very disheartening but it was also one of those relieving light bulb moments suddenly a lot of things about my life made sense. I’ve honestly felt like a hypochondriac most of my life. When I was young I had very painful legs, which was just put down to growing pains. I have realized my perceived clumsiness is actually a balance problem caused by the disorder. My muscles get weak and fail me a lot. My muscles can become fatigued causing my joints to dislocate. Some days it takes all I have to get out of bed.

Just getting my body to do what I want it to do is hard sometimes. My joints are lax and messages get mixed between the brain and where they’re going means that doing the most routine of things (like standing up) requires your muscles to work extra hard. That makes you tired. Things like going from standing to sitting and then up again can be exhausting. It explains how I am able to sleep like fifteen hours straight and wake up exhausted still. Our bodies have to work twice as hard as normal people. My joints can move and bend a lot more than what most people experience. My body makes all kinds of noises sounding like you’re full of pop rocks. Was that a gunshot? A firecracker? Nope, it was my hip haha.

The last two years I have had chronic pain symptoms throughout my whole body. It’s like my tendons and ligaments are like slinkies instead of strong springs My symptoms have spiraled out of control. I move my arm and the joint will dislocate it can feel so sharp the pain I sometimes feel like a knife is there. Just sleeping my ribs and sternum have dislocated. The sternum hurt the worst it was difficult just to breathe. Wintertime is the worst. My muscles can feel tighter in the cold, making things a lot worse.

Recently I woke up and my left thumb was so sore and swollen. My husband kept trying to get me to go to the emergency room but things like this happen and usually will pop back into place on their own. Around 6 pm the pain intensified at this point I begged him to take me to the emergency room I had pins and needles burning sensation from my fingers to my shoulder. The pain was unbelievable in my thumb, elbow, and shoulder. While waiting to see a doctor my fingers got this sweeping cold sensation going to my wrist. At this point, I no longer had control over my hand or arm. I could barely wiggle my fingers it was impossible to make a fist. Turns out when my thumb popped back into place it pressed against my ulnar nerve. The ulnar nerve runs from your thumb to your shoulder. It’s still not back to normal.

The past month has been hell not only with my arm but it’s felt like the flu plus the worst hangover of my life. I’ve been stuck in this Ehlers-Danlos flare-up for the past five weeks. It’s been the worst to date. Every last inch of me is sore and achy, my skin feels like it has glass under it. Just the other day I rode into town with my husband and my babies. I shuffled around in my seat nonstop trying to get comfortable. Eventually undoing the seatbelt because just it touching my skin was an excruciating intense, shooting pain. You wouldn’t believe how difficult things such as this are every day let alone during a flare-up. I barely can do anything right now because I’m in so much physical and emotional pain right, I feel so hopeless feel like I’ve had to put my life on hold the last month because of this disease. I’m starting to freak out thinking I’m stuck this way.

This episode feels like I’m going to war but I’ve been hit by a train at the same time. I can feel every ligament and joint movement every time I do something even if it’s just rolling over. My joints keep dislocating and causing pain, I can barely move my hands because they are so stiff. I just don’t feel well and I can’t do anything. My youngest child, Maverik, started saying Mum Mum Mum yesterday. It felt so warm and fuzzy hearing that but I could feel my heartbreaking at the same time. My whole life all I wanted to do was be a Mom. Everything I am is because of my miniature army. My husband, Joe has been forced to take a leave of absence from work to care for our family. He is definitely the MVP right now, and I don’t know what I would do without him. He’s playing Mr. Mom and being my nurse at the same time.

Recently, I picked Maverik up and I was literally shaking. When he sees me his entire body is just consumed with pure joy. I swear he was hugging me. It cuts me so deep that the last few weeks I haven’t been physically able to do that. I tried to eat dinner with them at the table tonight. My pain level was 1738/10. I made it through all of maybe five minutes of dinner when Jaxon (my oldest) said Mom are you okay? Are you not feeling good again? It cut deep: I hate that they have to see me like this I have been bedridden this entire time. My daughter Raegan tries to lay with me but just being touched right now feels like I’m being beaten with a baseball bat. I feel like it’s taking identity and stripping it away, and it’s depressing learning to be someone else.

I have been in an immense amount of pain all day. The thought of getting my children tested is devastating. This disease is ugly and horrifying. Knowing what I do now, if they are diagnosed Joe and I will do everything we can to help ease Ehlers-Danlos symptoms. We will help them take better care of their bodies than I did. When I gave birth to Maverik I can remember the doctor commenting on his hips before he was quickly sent to another hospital due to his heart condition. Jaxon shows symptoms, Raegan barely ever sleeps through the night and has more signs and symptoms of it than the other two. Together we will be Ehlers-Danlos warriors if so be it!

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