My life with Ehler's Danlos Syndrome

Follow me on my journey as we seek answers, battle against the struggles, & share in the joys as my new adventure begins with another service dog. It's my hopes that my story will help to encourage & to inspire others to continue the fight, & never give up.

So before we get to current events, I'll start with filling you in on some of life's events leading up to now. As you read these sadder moments, please be aware that when one door closes, another opens. My journey is not over, but another chapter is just beginning.

While growing up I didn't show to many health problems. I had some allergies (including odd ones), my face would flush turning beet red with any heat, or physical exertion (we now know this is a typical sign of Mast Cell Activation Syndrome (MCAS). My dad used to jokingly tell me that when I grew up I should marry a chiropractor because I had dislocated pretty much everything, which would later be a huge clue in getting my EDS diagnosis (many, many years later). I could run, play, jump, & climb (like a monkey, but always noticed that I didn't feel well standing in place for long.

So as I reached my teen years, I suddenly found myself constantly needing to drink lots of water & craving salty foods (common symptoms of Postural Orthostatic Tachycardia Syndrome (POTS). I had to drink around a gallon of water a day in order to not feel sick from symptoms of dehydration. I also started having chemical sensitivities, even to the smell of rubbing alcohol! That's an odd ball one, right! Never will forget the time I had a weird reaction to a combination of chemical cleaners & rubbing alcohol while visiting someone in a nursing home, I've never drank, but I'm certain that I discovered that day what it felt like to be drunk, but not in a fun way! I can only imagine how hilarious I must have looked bouncing off the walls of the hall as I tried to find my way to the door! My vision had gone a bright white & I blacked out the instant I reached the exit door. Thankfully that breath of fresh air kept me from going unconscious. All the way home (a two hour trip) I felt like I had a hangover. I was so relieved to get back home!

By the time I reached age 30 things began to increase more. An ER doctor believes I had two light heart attacks. These were caused due to my extremely low thyroid. I was put on Synthroid which my body didn't tolerate well so my doctor switched it to the more natural Armour brand.

A few years later I began to suspect that I had inherited the family Celiac condition so I started changing my diet to an all gluten free one. Thankfully an affect of this diet was that my thyroid blood levels balanced out & I was taken off the medication. This would not be the last we heard from my thyroid though.

Also while in my 30's my allergies got worse. My skin started peeling off my hands every time that I would pull weeds. My allergy to bees & bugs now included simple ants. Plus I started finding myself in the ER frequently for dehydration despite drinking a gallon of water a day.

During this time all of our kids had numerous health issues as well from Cerebral Palsy, Developmental delays, severe asthma, seizures which included temporary amnesia & paralysis, Autism (Aspergers), allergies, Celiac, heart attack, Gi issues, & many symptoms that doctors could not explain.

Our middle son became so sick & intolerant to all foods. He was so thin, weak, & sickly looking. As soon as we realized that whenever we left home for a few days that he felt a little better, we quickly made the decision to make an emergency move away from the near by factory, farms, & other possible triggers. Against all odds we made our emergency move & it worked! We saw many improvements in him immediately after moving! He started gaining some foods back & having more energy. I cried so many tears of joy that following Thanksgiving when he was able to eat a basic Thanksgiving meal! Whom I kidding, I still shed tears of joy every Thanksgiving when I see him eat! No matter what anyone tells you, NEVER give up! We now know that his food issues were due to Mast Cell Activation Syndrome & Eosinophilic esophagitis.

In the Foothills of the Appalachian Mountains

While so extremely thankful that our son had made some improvements, the move was very stressful & brought both rewards & hardships. Pros - We were back to living the country life & in the gorgeous foothills of the Ohio Appalachian Mountains. Surrounded by wildlife which we could see from our own second story raised deck. We had nearly 4 acres which included a creek for the kids to play in, & surrounded by forest. We also were able to get horses which had been the love of my life growing up. Cons- We were nearly three long hours away from our dearest friends, our oldest son was highly allergic to the horses so they had to be sold, our hill was extremely steep & impossible to drive up during the winter snow & ice, there were no good paying jobs in the area, & no internet service.

Despite the cons, we were ecstatic that the move had helped our middle son, we would have done it again in a heart beat to save him. My husband was able to get a job as an ambulet driver transporting individuals to appointments. Unfortunately, during an ice storm he tried to be a loyal worker & made his way into work. After clocking in he made his way outside to get his ambulet for the day. His feet suddenly went out from under him & all 6'6" of him came crashing down on his arm, breaking it clear in two with the bone now going to opposite directions. The surgery didn't go well & his heart stopped on the operating table & had to be revived with CPR. He had to be off work for a long while. Our oldest son's health condition got worse as he had a heart attack around that year as well & has continued to have more problems since. He was only 20 years old at the time. So after years of being a stay at home mom with special needs kids, we reversed the roles & I went back to work while my husband stayed home. I was so nervous, it had been such a long time since being in the working field, or I should say "paying" working field. I did plently of work around the house!

​ With jobs in the area being very limited, I first found a job doing homecare. That didn't go well as my sensitivities to chemicals, cigarette smoke, dust, & more set me off as I attempted to do my job. I then found a job working third shift at a group home. No major cleaning with chemicals required on my shift so "thought" it would be safe. I ended up being shoved down & aquired a back injury by one of the residents. I was now in my 40's, our stress levels were always high, & my health issues again started declining. More frequent trips to ER for dehydration, & now multiple ER trips for anaphylaxis as well.

Remember I said that we would hear from my thyroid again? I got diagnosed with an autoimmune disorder called Hashimoto thyroid & also told that I had nodules of signifigant size that might be cancer. After dropping those words as if I had nothing more than the common cold, the doctor walked out of the room & didn't even make a referral, or a follow up appointment! Needless to say, we switched doctors. My new doctor was great & it's now been at least six years & I'm happy to say that I was able to shrink the largest nodule with natural remedies & healthy diet changes. My thyroid wasn't the only thing I was now dealing with though. I had extreme chronic fatigue, brain fog, heart palpitations, tachycardia, bradycardia, chest pains, shortness of breath, dizzy & blacking out upon standing up, pressure feeling in my chest & tight feeling in my abdomen like someone was giving me a crushing hug. At the time we didn't know that these were all increasing signs of POTS.

To add to our stress levels, I received a call that my dad had a couple strokes & a major heart attack. The odds of him surviving the surgery were not good, but thankfully he made it through. With this in mind, we now found ourself once again doing an emergency move & heading back to our home county.

Now back home

It was great being back home with our awesome friends. The kids were thrilled to have internet again & I must admit, my husband & I were pretty happy about that too! We're in a small village town so the kids were also thrilled to be in walking distance of a libray again. I quickly landed a job only a couple blocks from our new home. It was great being in walking distance so that I was close by in case of emergency with the kids. I seemed to be well liked & was quickly promoted to department manager. I was wore out a lot, but was making it & as long as I kept up with drinking lots of water & comsuming lots of Pink Himalayan salt. I was at least doing better than before.

Within eight months of working there I became very sick with a stomach virus. With my problems of dehydrating easily it landed me in the hospital for three days. When I tried to return to work I just couldn't get my stamina back & was constantly feeling as if I was going to pass out. I tried so hard, but just couldn't function & two months later my doctor said that I was not able to return to work & was now disabled. Every past symptom had flooded me again. It was July 2017 & only age 46. Wow!, "disabled". That was a hard word to swallow! I had grown up independent to a fault so this was not something easy to accept. Despite fighting it with all my might, I found my self on a very fast downhill slope. Our time was spent going to so many doctors, & specialists searching for answers. Many of them were so horribly rude, & would even tell me that it must be in my head because they had no answers to explain my issues. Sadly, this is the case for many with EDS, POTS, or MCAS. They are not well known diagnoses, even among the medical field & even many that claim to know of it, are very misinformed.

One day a cousin of mine mentioned Mast Cell Activation Syndrome & asked if I had heard of it. I researched it & found so many things fit. What I hadn't expected at all was that this one suggested diagnosis would lead to the answers to many more, not only with me, but to the life long health issues of our kids as well! I literally cried as I read about these medical disorders because I could see all of the puzzle pieces of our lives finally, & suddenly fitting together! I discovered how the three were commonly interconnected & joined a local support group. That is where I received our greatest help as they guided me to doctors that not only were familiar, but that specialized in them. We all now had our main diagnoses! Finally, everything made sense!

The need for more specialist, & more diagnoses have continued to come our way though. Things like Tracheomalacia, Cranial Cervical Instability, Vocal Cord Dysfunction, EOE, Gastroparesis, Fibromyalgia, Dysphagia, Neuropathy, Arthritis, Degenerative spinal disorder, Cranial CSF leak (leaking spinal fluid), TIA stroke, Celiac, Raynuad's, AFib, COPD, & more. Over the last three years I had to accept that a wheelchair is not a "failure", or a "weakness", but a "tool" to my freedom. I am a part time wheelchair user, but have been finding myself having to use it more & more as my issues continue to progress. I depend on many "tools" these days, I'm in a neck brace 24/7 now in order to prevent more strokes, & attempt to lessen additional damage. I also use wrist braces, knee braces, back brace, SI brace, finger brace, & my favorite so called "medical tool" (I hate that term, because they are a living soul with feelings) was my Service dog Lexi. With the help & guidance of a 12 week course from a Petco trainer, & watching tons of service dog training videos on Youtube (Thank you Youtubers!), I self trained her. She was a gorgeous & sweet girl, 1/2 black Lab, 1/2 Golden Retriever. When having a POTS flare, or fainting from it, most people would avoid me, walking out around me as if I had some plague, or they would glare as if I was someone high on drugs. When I got Lexi, "fewer" people would behave that way because with her by my side they realized that I must have actual medical problems. Lexi gave me the confidence, the courage, & the help to leave home.

The day our hearts shattered

Lexi was not only my service dog, she was a best friend, she was family. She even taught herself to pickup & respond to my husband's seizures as well. She was so loved by us all. In June 2020 she started limping & acting lethargic. Over a two week period we took her to two separate vet clinics. Both thought she had a back injury & gave her meds for it. Our worst fears then came true. On July 4th weekend 2020 her condition worsened. With regular clinics closed for the holiday weekend, we rushed her to yet a third vet, an emergency hospital & found out that it was not a muscle injury at all. She had an extremely aggressive type of liver cancer that had already done severe damage & spread to her spleen as well. The vet said there was no chance in saving her, & any attempt would only prolong her agony for another couple weeks, if that. On July 6th we had to say goodbye because I couldn't bare the thought of prolonging her agony. We blamed ourselves with so many "what if's", but we fed only high quality food with no corn, soy, or other harmful additives, we avoided preservatives, artificial ingredients, & gave her natural spring water from a very high rated fountain in a neighboring city that we also drink to avoid city water chemicals. We did our best, & sought help at the very first sign. The vet said that with this type of cancer that by the time it shows symptoms, it's to late, & that it was just bad genetics, but I will always wonder if there was something more I should have done. Some way to have prevented it.

Life will never be the same without her. There is no words to describe the devastation, the brokenness, & the loss we have felt.