My name is Katie Smith, and I am known as Capital City Wonder Woman, but behind the tiara I am so much more. I am a 38-year-old mom of 4 bio kids, and 5 bonus kids! I am a pastry chef by day, a very active sports mom by afternoon, and Wonder Woman visiting kids in the hospital by night! I love going and cheering on (and embarrassing) my kids at all of their school functions. I love to travel, camp, hike and backpack with my husband and kiddos! I am also the Vice President of the League of Enchantment, a nonprofit volunteer organization that visits kids in the hospital. And beyond all of that, I am just a woman living with constant pain from multiple health conditions.
In 2015, after years of pain, dislocations, numbness, and so much more, I was diagnosed with Ehlers-Danlos Syndrome (EDS) Hypermobility type 3. And I was also told there really wasn’t anything they could do for me. So, for eight years I just grinned and beared it, with everything getting worse, little by little. But then I finally found the right doctor; a doctor who listened to every one of my laundry lists of symptoms and diagnosed me with Psoriatic Arthritis (in all of my joints and spine), Hashimoto’s, Thyroiditis, Fibromyalgia, essential tremors, and Paresthesia. To finally find someone who listened, who actually took the time to help me understand the pain…to help me understand the days I couldn’t get dressed by myself…to help me understand the numbness that at points was debilitating, was a godsend. Though I still have bad days, they are fewer and farther between, and I am so grateful for that!
5 Invisible Symptoms
- Constant pain. Even though my meds help so much now, I am still always in pain. It is just completely manageable for me now. When you have EDS, you have to have a high pain tolerance; you have no choice. When we go to a normal doctor, we know we have to add numbers to the 1-10 pain chart. In my EDS world, I now live at a 2 daily, but to most others, that would be equivalent to a 4 or 5. Since I used to live at 6 in my world, a 2 feels like nothing.
- Numbness. I have numbness that hits my ears to my chin, down my arms and legs. It can get so bad at times that I can’t hold things in my hands. I have definitely broken my fair share of items from things just falling from my hands when the numbness hits hard.
- Random, sharp nerve pains. Sharp, sudden level 7-8 pains will hit me in pinpoint spots for an instant, and then disappear. It’s like a bee sting and as soon as I have a chance to react, it’s gone. But it can happen 10-20 times an hour some days.
- Fatigue–severe fatigue. Like you are fighting against everything in a bowl of Jello. To walk, move, bend, even talk some days are so tiring. I have had to cancel too many things because I am just not able to do anything but lay down. When the fatigue hits hard, I feel like I’m not even in the room. I know my body is, but I am not able to focus on conversations, or even listen to anything and understand what is being said.
- Dislocations. Everyone with EDS has their problem spot, and mine is my hips–my right hip more than my left. When my hip gets out of joint, I can barely walk, if at all. The pain shooting down my leg and up my back is debilitating. Physical therapy helps me keep them in place more, and to be able to put them back in place easier.
4 Things That Help Me Manage Pain
- Listening to my doctor! It might seem silly, but after finding the right one, I have learned to listen to every piece of advice she gives me to manage my pain.
- Cosentyx! This med helped bring my life back. It has brought my pain to such a manageable level that I have days I forget I even have it.
- Learning to rest…I am not good at this. I love to go out and do things, all of the time! But I have had to learn to listen to my body more and learn to rest when my body needs it. Whether it’s laying down with an ice pack or heating pad, or just sitting when I would rather run around with my kids, I have learned to listen and rest.
- Vitamins and food. I have seen a huge change after making sure that my body is getting the right vitamins and nutrients it needs. I try to control the amount of gluten and sugar I put in my body whenever I can, but being a pastry chef makes that tough. I have seen a huge difference though when I can cut those out more. The fatigue, chronic pain, and numbness is greatly lessened when I am careful about what I eat.
3 Ways My Life Has Changed
- I have had to learn to advocate for myself. To tell others when I hurt, or need a little more time, patience, etc. That was a really big pill to swallow for me. I hate letting people know I am struggling; I want to just power right through. But, shockingly enough, people want to know, they want to help, or at least listen and understand more.
- I grew up very athletic. I loved playing basketball, volleyball, soccer, etc. I have had to learn my limits and realize the things I can no longer do, while adapting to other things to keep me active that aren’t high impact.
- I have to pace myself, and not over schedule myself. I must spread things out and make sure I leave days, or at least times, for me to just relax…and not feel guilty over the days I can’t make dinner, I can’t fold laundry, or even pick up items on the floor, because it is just too much for me that day.
2 People Who Inspire Me
- My oldest daughter. She is one of the strongest people I know. She has been through so much in her life that would have destroyed others, but she doesn’t let any of it define her. If anything, it has made her stronger! She is crazy protective of her siblings, family, and friends that are her chosen family. She has picked me up and helped me more than she will ever know! I am so crazy proud to be her mama!
- My husband! He is my constant rock and support through my journey. He is always encouraging me to continue to fight for me at doctors’ appointments. He has helped me on day-to-day things when I can barely move; from helping me stand up, get dressed, walk from place to place, and picking up the household things when I can’t. He even goes on the same diets I do to help me stay on track. I definitely wouldn’t be doing as well as I am doing today without his amazing support!
1 Thing You Want People to Know
Invisible conditions are just that, invisible! If you are lucky enough to not have one, do not judge others. Do not assume just because someone is parked in a handicap spot and are walking into a store, that they are fine! That might be the only thing they are able to do that day, is walk into that store. And for those who do live with invisible illnesses, advocate for yourself! Over explain everything since no one can see your struggles. You have to make sure they can hear it. Never stop fighting for you!
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