Awareness Saved My Life and It Could Save Yours.
My Dysautonomia Story.
Let me introduce myself. My name is Mel Haren. I am 34 years old and live in Nashotah, WI. I am a wife, a step-mom, a mother, and was mis- and un-diagnosed for over 30 years! I would like to tell you my story of how Awareness saved my life and it could save yours or someone you know.
The symptoms started as young as a toddler. I struggled with head aches and migraines, stomach pain, constipation, nausea, and anxiety. Even though I tried to hide a lot of my symptoms, I couldn’t hide them when I was in extreme pain or when I would have emotional outbursts. I was struggling in school socially and in my education. Around the age of 8, my parents became increasingly suspicious of what was going on with my health. So they took me to my regular Doctor who then had me get x-rays of my GI system. They did see constipation, which can cause headaches, stomach pains, and nausea. They also said some of my symptoms could have come from the anxiety as well. They also concluded that the anxiety came from having divorced parents. Little did they know, MUCH more was going on.
Once I was labeled with anxiety, it took my voice away. From that point on, doctors, educators, friends, and family would often minimize or rely on the diagnosis that I just needed to relax. That this was all in my head. I also became an easy target for people to blame things on that I didn’t do. This made me feel CRAZY! It knocked down my self-esteem to almost nothing. I built even more walls around the truth on the constant pain I was in. I remember being in gym class never being able to keep up. My knees and hips were constantly hurting me. But it was put off as growing pains and me having a low pain tolerance. I also began to feel dizzy off and on throughout the day. A very scary memory I’ll never forget was in 3rd grade and getting stuck on the word ‘IT’. I knew I knew the word, but I just couldn’t read it. I sat there for over 15mins just staring. Situations like this would often get me into trouble at school. Some teachers thought I didn’t want to do my work. Some thought I couldn’t because of a learning disability. I did test positive for dyslexia. Some teachers thought it was the anxiety. Now I know it was much bigger than that.
As teasing heightened from other kids in grade school, I fell behind an entire grade level, and became completely broken inside and having more severe symptoms as time went on. This is around the time I first started to wish I was never born. Again, no one really knew the severity of my pain because I hid it to the best of my ability.
Once I hit 14, I got my period and a whole other set of symptoms came on. The average length of my menstrual cycle was 8-14 days of heavy bleeding. I noticed immediately that tampons were very painful. But going to school, work, or any kind of social life was very difficult while having all my symptoms especially on my period. I would often pass clots the size of my fist and pain that would make me hit the floor and cry. I had to bring extra clothes everywhere I went. You can’t imagine the extra stress I was put under trying to hide the extent of my very embarrassing extreme cycle.
High school was also the time I started to pass out. It wasn’t often. It was about 2 times a year. I also started to feel irregular heart rhythms. I would feel my heart start to race for no reason and I would feel adrenaline rush through my body. This would cause me to have outbursts at times that were illogical. And if something upsetting would happen, my body would go into fight or flight. My adrenals would be turned on full force unable to calm myself down. I was struggling in school and at work because it was very hard to learn and function when you are in constant pain and your brain isn’t working. I also struggled in all my relationships. I wasn’t able to be calm when things were difficult. I wasn’t able to tell the truth of all my symptoms because I found them to be shameful. I also didn’t want to hear I was crazy again. And on top of all of that, I believed all the bad things people said about me. I believed I was a bad person who was crazy, stupid, and worthless.
Right out of high school I got married. To make sure I am kind to my ex’s privacy and reputation, I will only speak about my part in the marriage, and it was not good! He married an unhealthy mental, emotional, and physical human. I had no self-esteem and was not able to be a good friend or wife. And physically, I was in constant pain every where including my pelvic floor. Our marriage ended for more reasons then just my health, but it was certainly a big reason. It was also the reason many relationships, both friendships and dating ended throughout my life. For anyone I hurt, let this be my very public apology. I am very sorry for any pain I caused anyone. Even though my health is a major reason, I don’t see it as an excuse. They say ‘Hurt people, hurt people.’ Telling my raw story is just one step in becoming a person who is hurting, but doesn’t take casualties.
By the grace of God I met my now husband, who has been the most supportive and understanding person I have ever met. He became someone I could be honest with about my constant physical pain. He helped me calm down from adrenaline rushes that would put me in the doctors office because I couldn’t shut it off. He massaged me to help with body pain. He took care of me when I had disabling migraines. He helped me through monthly sinus, eye, ear, urinary track, and bladder infections. But it was the infertility that he couldn’t help me with at all.
I was having miscarriages, never able to make it passed 3 months. And at some points, I would just not ovulate. That’s when we decided to go to the doctor who felt I had all the symptoms of endometriosis. When they opened me up, they found out that my left fallopian tube was pinched to a section of my colon. So my eggs would sometimes get stuck and hemorrhage. Or they would get stuck then drop in an untimely way. Or just drop like they were supposed to. The left tube looked normal however wouldn’t always ovulate. But they saw no reason for my miscarriages. As far as my colon, we found a 3 lbs blockage. 3 weeks after the procedure, it got worse. I began to not fit into my clothes because I had not passed any bowels no matter what I tried. We assumed it was because of the medications from the previous procedure. So I went in for the first of many colonoscopies and got cleaned out. I went on a liquid diet for 2 weeks to make sure I didn’t get blocked up again while the medications from the colonoscopy wore off. We then began infertility treatment that included shots, taking your temperature, and ovulations tests. After gaining about 15lbs, more miscarriages, and 2 years passed, I had had enough! So as I gave it all up to God and accepted whatever plan He had for me. And that’s when a miracle happened!
I became sick again with a terrible sinus infection and needed to go on another heavy antibiotic. So the doctor of course tested to make sure I was not pregnant even though I told them that I couldn’t have been pregnant cause all my tests came back to NO OVULATION. The tests came back, negative so I went on the heavy medication and had a LARGE margarita. After 2 more weeks, I still felt sick but more with severe nausea and dizziness to the point of passing out on occasion. So I went back to the doctor and they again tested me, but a blood test this time. We found out that I was about 2 months pregnant! Doctors couldn’t explain it, but we knew it was God.
As I went through pregnancy, my symptoms of course worsened. My back pain and joint pain increased. My nausea and throwing up continued the entire pregnancy. My dizziness and passing out was heightened. My head aches and migraines continued to be daily but more intense. I felt like I had the flu 24/7. But it was worth it when this 5’1 had a wonderful 9lbs 3oz 22inch baby boy! After struggling with a difficult labor, I found myself not able to heal as fast as most women. It took me about 6 months to recover. My husband had to take care of our baby and myself for the 1st5days because I was unable to get around by myself. I needed help just walking to the bathroom. But things got more difficult as years past.
I had gained more weight and was unable to lose about 35 extra pounds no matter the diet. I couldn’t work out because I would get incredibly exhausted that would often result in dizziness and passing out. My joint pain was getting so bad that 24 hours before storms and during the storms I would pump myself up with over the counter pain medication, use ice and heat, creams, baths, anything to get through. My migraines became worse and I started to have off and on vision loss. My GI system was a mess and very painful. I had to get regular colonoscopies to deal with blockages. My dizzy spells got worse and passing out was more frequent. My husband and I thought maybe it was stress and I had too much on my plate and it was time to quit my job. So I did, but the symptoms were still getting worse.
At one point I lost my eye sight for 2 weeks. Loud noises and bright lights become painful. I lost function in my hands off and on. My feet would turn purple and blue. I began to have intense chest pains that would make it difficult for me to breath. My inability to walk or even stand for very long was dwindling. Again the dizziness and nausea was daily. When I got a heart monitor we discovered I would have unexplained fast and slow heartbeats. Whenever I went into the doctor they would say my blood pressure was great! But there were times I would be sitting on the couch relaxing and my heart rate would sky rocket well over 100 when my regular heartbeat was about 54. And then there were times when my heart would be at 54 and slowly drop to 40 and I would pass out. I would also have days and sometimes even weeks of extreme weakness and fatigue where I couldn’t even get out of bed. It felt as if I was living in constant quick sand and to lift my arm to drink water was like asking me to lift 100 pounds. I began to have tremors all over my body off and on. If it was winter, I would easily go into pre-hypothermia. If it was summer, I would easily overheat even if I did everything right. My memory got worse forgetting birthdays, even my sister’s wedding shower. Sometimes I would forget how to speak. I wasn’t able to get more than a few hours of good sleep a night because of my symptoms. After fighting with anxiety most of my childhood, it was probably some time in my early adulthood, deep depression became a real scary issue. Mood changes would come out of no where and so would my adrenaline rushes. I was a hot mess and no one knew what to do or what was going on.
Then one ER visit changed EVERYTHING! I had passed out and I landed myself in the ER again. The nurse was reviewing my file and listening to me cry and try to explain how much I am in pain and no one seemed to believe me. How I KNEW I was sick but everyone seemed to think it was in my head! Or that I was exaggerating my symptoms. They assumed what I was experiencing was normal. And that’s when the ER nurse said, “I think you may have Dysautonomia.” WHAT?! What is that?
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. In real simple terms, everywhere you have a nerve, you could have a problem. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. This illness that affects more Americans than Parkinson’s and MS combined. People of any age, gender or race can be impacted. There is no cure for any form of Dysautonomia at this time. It can be mild to debilitating. Some are in wheelchairs and some bedridden. And each day can be different! One day you can look normal, and other days you are in bed barely human. Despite the high prevalence of dysautonomia, most patients take just shy of 5 years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
After many specialists and many tests and about 2 years later I got to see one of the 2 Dysautonomia specialist in this the state of Wisconsin. I was then finally diagnosed with Dysautonomia-POTS (Postural Orthostatic Tachycardia Syndrome). It’s hard to imagine having to wait more years to be diagnosed when you finally have a name, but with the lack of specialists, this is a sad reality for too many people. An estimated 1 out of 100 teenagers have it, with a peek onset age of 14. Adult patients total of 1,000,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and MUCH more. I HAVE ALL THESE SYPTOMS! While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure. After this diagnosis we tested my kidneys and found they weren’t holding sodium so I was constantly dehydrated. Imagine a time you were very dehydrated. How well did you function? What was your mood like? Well, every day I wake up that way and desperately try to stay even slightly hydrated with electrolyte drinks and LOTS of salt! I believe this was a major issues throughout my life.
I was also Diagnosed with hEDS (Hypermobile Ehlers-Danlos syndrome). It’s been discussed that this is what could have distressed my body to bring on Dysautonomia – POTS. Hypermobile EDS is an inherited connective tissue disorder that is caused by defects in a protein called collagen. Common symptoms include joint hypermobility, affecting elbows, knees, fingers, and toe joints; bruises easily; and chronic musculoskeletal (muscles and bones) pain. Frequent joint dislocations and partial dislocation, often affecting the shoulder, kneecap, and the joint that connects the lower jaw to the skull. I HAVE PAIN AND ISSUES IN ALL THESE AREAS! Although hypermobile EDS is thought to be a genetic condition, the exact underlying cause is unknown in most cases. Treatment and management is focused on preventing serious complications and relieving symptoms. This diagnosis explained why I was having constant and severe joint pain since I was little. It was NOT ‘growing pains’. It’s why I have easily injured myself like having consistent dislocations and partial dislocations especially in my shoulders. It explained all the muscle and bone pain. It also explained the weird and random bruising. We also feel an EDS injury to my hips caused me to have Trochanteric Bursitis which is inflammation of the Bursa (fluid-filled sac near a joint) at the outside point of the hip known as the greater Trochanter. When this Bursa becomes irritated or inflamed, it causes pain in the hip. We also feel all this goes along with my extreme pelvic floor pain.
Peripheral Neuropathy was another diagnosis. The condition results when nerves that carry messages to and from the brain and spinal cord, and then to the rest of the body are damaged or diseased. We found in my hands and feet I often do not pick up on pain. For example, I was out for a drink with my friends (literally ONE DRINK) and when I waved my hand I hit a cooler. I’m a klutz FYI. It wasn’t until I looked at my drink and saw I had blood dripping down my hand and arm. I looked at my hand and I had ripped off 2 of my nails. So, I have to be careful with my hands and my feet. I check my shoes to makes sure nothing is in them that could hurt me, and sandals aren’t the best idea.
With my body being under all this stress it may be why I have Fibromyalgia as well. This is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
Being diagnosed was at first a huge relief. Finally, someone knew what was happening to me! Finally, there was a name! Finally, I could get help and get better! So, I thought. Yes, it is true I have found support and answers. Sadly, there is no cure or many treatment options for me. There is so many more questions than answers about Dysautonomia and my other diagnoses.
HOW YOU CAN HELP Prevent someone from 30 years of mis- and un-diagnosed!
*Know the Name. Dysautonomia. It’s pronounced Dis-auto-no-mia.
*If you or someone you know has been having these types of symptoms, please educate yourself and talk to your doctor.
*If you have children, make sure that they feel comfortable telling you what is going on in their health and life. Make time for these important conversations. Don’t always rely on the medical field’s opinion. Fight for answers.
*Be kind! This is what they call an ‘invisible illness’. We may use handy cap spaces or carts at the grocery store because we physically can’t or shouldn’t do the extra steps. They say our Dysautonomia bodies are working like someone who just ran a marathon. So, imagine yourself after a marathon and someone says, ‘Let’s go shopping!’ And you will find some of us can be bedridden for days after we do normal tasks like this. We also have a hard time standing in line. We may ask you to hold our place in line and have to find a place to sit. We also often have dietary requirements in order to live. It’s not us being vain or difficult. So, don’t judge us when we pull out our Himalayan pink salt shaker. Please don’t stop inviting us! It’s true we may often have to cancel last minute, but don’t assume it’s because we don’t want to be there or we are just irresponsible. Try your best to make things possible for us to be social and active. Sadly, depression and suicide correlates with this illness and we need your support. We miss the lives we lived before we got sick. So, check on us. Send the text or card. It will mean more to us then you can know.
*On April 27th, 2019 we invite you to the CHEESEHEAD CHALLENGE 5k Run, Walk, or Roll (wheelchairs & strollers welcome) at Sheehan Park in Sun Prairie, WI. There will be Food, Drinks, Live Music, and Vender Fair! FREE cheese samples available at every 1k completed! And 1 FREE glass of beer to those over 21 who complete the 5k! This event is for the Kids too! For 12 and under, kids become a mouse on a scavenger hunt for cheese! Please go to www.cheeseheadchallenge.org to Register! Proceeds go to Dysautonomia International who help make a difference by raising awareness and support research, education, and advocacy programs. If you would like to be apart of my team, we are the Dysautonomia Dominators!
*Look for the Salt & Pickle Social Media Challenge that we will launch this July 1ST 2019! Which is the hottest month in WI. Much like the ‘Ice Bucket Challenge’, we will be starting off our Challenge to take a lick of salt and shot of pickle juice while showing proof on Social Media and then Challenge 3 more people to keep the Challenge going. Why Salt and Pickle Juice? Because the most common form of Dysautonomia is POTS and since most people have issues with their kidneys and need to have a high salt diet to stay hydrated, we chose Salt & Pickle. Why 3 people? Because it is 3 times harder for someone with Dysautonomia to just stand up then a healthy person. And if you choose to deny this Challenge, we will be asking you to donate $7 or more since there are more then 70 million people worldwide with Dysautonomia.
*On September 15th 2019 RACING HEARTS DAY 5K and FAMILY FUN for Dysautonomia Awareness at Kettle Moraine Lutheran High School.
*Come to other events! We light up the domes turquoise and have other fundraisers around the state. Check out Dysautonomia International for events Education and Support!
I’d like to end this long story of how after 32 years awareness saved me, on why I wrote this in the first place. I did this because I want awareness for Dysautonomia so no one has to struggle with out answers as long as I did. I want people with Dysautonomia and all chronically ill people to know you aren’t alone and I am here to help. After going through shock, fear, and then depression of my diagnosis, with the grace of God and a wonderful support system I am on a journey of peace no matter my circumstances. I am learning to handle my symptoms in a more manageable natural way. I am learning to accept God’s will for my life and still be happy. I am learning to be a worthy wife, mother, family member, and friend even though I am disabled. I am finding my place and purpose even though life is definitely not how I planned it. I am learning to love myself by forgiving myself for the things I can control and the things I can’t. If any of that resonates with you and would like to follow along with me on my healing journey, you can find me on Instagram at melkharen. This is where I will have REAL talk about food and diet, supplements and essential oils, living chemical free, healthy weight loss, prayer and meditation, relationships and kids, self-care and self-love, and most importantly how God is GOOD!!! I’m not perfect and far from it which you will see in my non-fake Insta! But if I can share what works for me and it brings down the suffering of just one person a little bit, then I have done what God has called me to do. Much love to you all! And thanks for reading!
••• About the author: Guest blogger: My name is Mel Haren. I am 34 years old and live in Nashotah, WI. I am a wife, a step-mom, a mother, and was mis- and un-diagnosed for over 30 years! I loved to tell you my story of how Awareness saved my life and it could save yours or someone you know. Please SHARE my story + help spread awareness.