“I have the urge to share my journey with as many people as possible. To raise awareness, to educate, and to help others so they don’t ever feel alone like I did in the beginning of my journey. My story has been long, like many others, but it’s also full of hope and gratitude. My husband and I were married at the age of 19, in 2003. We just knew right away we were soul mates. Pretty soon after our wedding my health started to go haywire. I noticed irregular periods, abnormal hair growth on my chin, and in two months I had gained 50 lbs. We went to a few different doctors seeking help. Several doctors told me that I had just become comfortable in my marriage and I wasn’t ‘trying anymore.’ Wow, did that hurt a nineteen year olds self-esteem. It took about a year and half to find the correct doctor who would finally listen to us. I was finally diagnosed with Polycystic Ovarian Syndrome (PCOS). My doctor found a million microscopic cysts on my ovaries. We came up with a game plan to help me lose at least sixty pounds, because at this time we knew we were just about ready to start planning a family. I also started Metformin, a medication to help regulate my insulin, which I still take today, twenty-one years later. In about 8 months, I lost sixty pounds and was okayed by my doctor to start trying to conceive. Luckily, PCOS did not hold us back from starting our family. We were blessed with 3 healthy children. The only issue I had was breaking my tailbone during childbirth, each time. We had no clue why that would happen to me, but as you continue to read you will understand.
So, fast forward about 10 years. At this point in my life I was staying home with our 3 kids. I was relatively healthy, until this day. I woke up with severe back pain, and it continued to get worse throughout the day doing normal daily chores and taking care of our youngest, who was a toddler. By the end of the day, I physically could not walk. I called my husband to pick up dinner on his way home. I was concerned but thought some ice and heat would help. My pain continued to get worse throughout the night. I got up to use the bathroom in the middle of the night, and I fell to the floor. I ended up having to crawl to my husband to wake him up to help me. We ended up in the ER. Of course they just pumped me full of pain meds and told me to see the specialist as soon as possible. The following week I was diagnosed with scoliosis, degenerative disc disease, a couple of herniated discs and bulged discs in my lumbar back. This was quite a shock, and took quite a while to recover from. This incident was the beginning of all my recent medical issues. It just never really ended from that point moving forward. I began having widespread joint pain, brain fog, nerve issues, sometimes I felt like bugs were biting my skin but nothing was there, constipation, diarrhea, migraines, dizziness, I bruise easily, extreme fatigue, shakiness, abdominal pain, I couldn’t get warm, flushing, and hives. There were many more, but these were the main symptoms. After seeing many doctors and having every test and scan ran imaginable, plus 2 years, countless dollars out the window, a rheumatologist diagnosed me with hypermobile Ehlers Danlos Syndrome (EDS). My husband and I felt so validated in the moment for many reasons: 1) We weren’t crazy 2) We wouldn’t have to continue this crazy mystery cycle of the unknown 3) Hopefully no other doctor would gaslight me and make me feel horrible about myself. But, at the same time, this doctor told us, ‘There is no cure, there is no treatment, no one can help you, don’t waste your money going to the doctors, read this book about EDS and you’re good to go.’ Our drive home was pretty quiet.
From 2016-2023 a lot has changed. It actually took me six years to find a doctor who would treat my EDS. Once I found her, life has been a lot better! Just this last year, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, so I’m still learning a lot about my body. My family is amazing at making me feel seen and heard. I don’t feel alone anymore, they are my support system. My kids are older now, 17, 15, and 11. They understand what I go through. My husband is my saving grace. When I don’t feel good, I remind myself that my children are my everything and although I don’t have to prove ANYTHING to them, I know they are watching me. I want to stay positive in my hardest, darkest moments because I want them to know they will encounter hard times too, and they can overcome those hard times with a positive mindset!
Nowadays, I’m feeling pretty good! Low Dose Naltrexone has helped me a lot. Summertime is better for me because of the joint pain. I’m a part time cosmetologist and an artist. I own an Etsy shop. I paint wildflowers and landscape and that provides me so much happiness.
I would like others to know that we are tough!! We go through a lot in one day! Everything is carefully planned out. Just because you can’t see our illness, doesn’t mean it doesn’t exist.”
Katie
Wyoming, United States