‘Every time I gave birth, I awoke the dormant beasts inside me.’: Mom of 3 shares journey to Ehlers Danlos Syndrome, Lupus diagnoses

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“Chronic illness is one of the hardest journeys anyone can face. I’m one of those people who never went to the doctor. I’d avoid it at any cost. I never felt comfortable in a hospital-like environment. It, honestly, gave me the heebie-jeebies. I guess that’s why it took so long to learn I even had any type of anything. If I could fix myself with a home remedy that’s what I would do. In hindsight, I wonder if things would’ve been any different if I went to the doctors regularly. I always felt I could deal with anything on my own.

Before all of it happened, I was a 30-something mom of two boys and a newborn baby girl. I was the super stay-at-home mom while my husband worked full-time. I was so proud of being that person. Doing everything for everyone, being the person they all could count on. That was exactly what fed my soul. My children gave me purpose and my husband provided inspiration. Though I never knew this is the life I wanted, I quickly learned it was the one I needed.

It healed me in a lot of ways from my own childhood trauma. I saw a lot of things clearly by becoming a mom that were veiled by my innocence as a child. I gained the insight I desperately needed. I saw the wrongs, I could finally see that I was not to blame, recognizing no child should experience what I did, but that didn’t take away the hurt. My pain ran deep, and so did feeling unworthy, unloved, unneeded.

childhood pic
Courtesy of Selina Samaniego

I vowed to never to be that parent. I became obsessive. I would continually tell myself, they have to know I love them, that it will never go away, because I am their mom. I feared them ever feeling the insecurities and unworthiness that haunted me. All I wanted was for them to feel the possibilities, to know they can, to be confident. I put all my energy into my marriage and my children. I cared for nothing else, not even myself.

That’s probably where I went wrong. I put so much value into my family while I still didn’t value myself. I thought the only way I’m worth it is if they’re thriving, happy, secure individuals. I never ever thought of myself, but it all catches up to you one way or another.  And that’s exactly what occurred.

By the time my newborn baby was eighteen months, the gravity of not caring for myself enough fully took over. It was weird, because although it felt like a slow progression, it all happened so quickly. I can remember clearly researching if breastfeeding can cause anxiety. My emotions were out of control and all I could think was hormones/pregnancy. From there, everything quickly spun out of control.

A month after my frantic research I made my second EVER doctor’s appointment with a primary doctor. All my other appointments were with an OB/GYN. I would only go for my women’s yearly and pregnancies. As for the first primary doctor, I went due to debilitating jaw pain.

woman outside
Courtesy of Selina Samaniego

I went one time, and I was diagnosed with TMJ (Temporomandibular joint dysfunction) and told to get a mouth guard. It was further explained there was no cure, something I’d get used to hearing years later. I continued to have horrible headaches and pain, but rationalized it as just the TMJ. I could handle it, right?

When I finally made my appointment, due to what was happening to me, I was concerned about the sun. I realized anytime I was in the sun, even in the shortest amounts of time, I got these nasty, itchy, burning rashes. As a young girl I always had super sensitive skin.

My parents had to pay close attention to anything I came into contact with. For years, at least once a year, I’d have a huge hive outbreak all over my body. My eyes would swell and my body would itch beyond anything I could describe. My parents never got it checked, and I thought I grew out of it. I later learned that was another piece of this puzzle.

woman with rash
Courtesy of Selina Samaniego

At my appointment, the doctor was quick to assess me. She saw the panic; my anxiety was out in full force, and for someone who isn’t a crier, I was bawling my eyes out to a complete stranger. I struggled to get out what I needed to but I managed to say, ‘I can’t be who my kids need.’ I got lucky with this doctor (she is the only one I trust). As we went on, she calmly asked me a few questions and suggested I start on antidepressants.

My head was like, ‘What!?’ I don’t need that stuff! I’m fine…everything is fine.’ I protested but she kindly helped me understand why I may have needed the medication. She explained I am experiencing generalized anxiety and needed help balancing. She went on to say high-levels of stress can cause my health to act up. So, in order to figure out what was truly going on, we first needed to treat my anxiety. It took a lot for me to give in, weeks to finally take the medicine, but I now realize it changed my life.

In that same appointment was the first time Lupus was brought up. She asked about family history, but nobody in my family had it. To be honest, that was the first time I really heard the term. She educated me and said that it’s a possibility due to photosensitivity. I would need to get a blood test and in the meantime she prescribed a topical cream. I, of course, went home and researched all I could. My thoughts raced… This could not be me though, this is something simple, I’ll be back to ‘normal’ soon.

woman in doctor's office
Courtesy of Selina Samaniego

That Monday I got a call from the medical assistant stating, ‘Everything came back okay.’ To say I was relieved would be an understatement. I thought to myself, ‘So, then I’m just photosensitive. Okay, I can handle that.’ However, two days later my phone rings and I see it’s my doctor’s office again. I innocently wondered, ‘Hmmmm, what could they be calling for?’

I calmly answer, ‘Hello?’

‘Hi, this is Dr.______.’

Whoa, why is the actual doctor calling me?!

She continues, ‘My assistant called you before we received all your blood results back. The ANA test takes a little longer, and I’m sorry, but it come back positive.’

I was unsure what she meant, ‘Um, so what does that mean?’ I inquired.

She explained, ‘It may be Lupus like I suspected and I need to send you to a specialist as soon as possible.’

I was quiet and then asked, ‘Is this bad?’

She reassures me, ‘It’s something a specialist can help you manage.’

When we hung up I wasn’t sure how to process. It’s not like I had clear answers, there was obviously more to the story. This is truly when the long, confusing journey began. In the coming months my primary doctor expressed to me I am the most difficult case she’s ever had.

My first few Rheumatologists were total duds. One said because my inflammation markers weren’t high enough he couldn’t treat me. He explained to me why he doubted Lupus. So I thought, false positive, great I’m okay. I noted to stay out of the sun and believed that would be the cure. However, I was sorely mistaken. Things continued to take a very big dip.

woman getting blood
Courtesy of Selina Samaniego

After months and my symptoms progressing, I went to see my primary doctor again. She sent me to a different specialist. At this point, my pain was at an all-time high. I was diagnosed with Fibromyalgia by my primary and was taking meds to try and ease it.

I’ll never forget this next appointment. His bedside manner was so off putting. He had an assistant typing out every word said, he looked at her more than me, and he made no attempt to show compassion. I was a number. However, he did figure out some key diagnoses for me.

I learned I had Irritable Bowel Syndrome (IBS) which was not fully diagnosed yet, and for the first time I heard about Hypermobility. Though I was perplexed, I have always been super flexible. His advice was: ‘There is no cure, you’ll probably outlive everyone but don’t be in the kitchen a lot using utensils, wear arch support, and driving will cause pain.’ He added, ‘Fibromyalgia isn’t real. You need to fix your sleep and most of your issues if not all will go away.’ He said I’ll always deal with pain but I’d be fine. If anything changed to make an appointment.

If anything changes? I couldn’t even comprehend what that would look like. Would that pain even be livable? To say I left feeling like a fool would be an understatement. I thought, ‘Wow, I’m really doing this to myself.’ I was completely defeated. It took me a year, yes a full year of intense pain, to go back to any doctor and trust they’d listen. It almost cost me everything.

I tried so hard to overcome it. I’d tell myself I’m the reason, so fix it, but I’d only get worse. When I finally went back to my primary doctor, I had deteriorated to the point of no longer functioning. I could barely hold myself up, my whole body hurt, my eyeballs throbbed. I had to wear sunglasses inside, it felt like my hair follicles hurt, my gums bled so badly. My hair fell out in clumps, I had mouth sores and headedness, and clothing felt like torture. Sounds hurt, the smell of air made me sick, nauseous. Food didn’t exist, I couldn’t eat anything. I was under 100 pounds (I’m 5’8), car rides were hell, sleeping didn’t happen, anxiety ruled me, pain swallowed me, it felt like my life was slowly being taken from me. It was torture. I lacked cognitive function and completely lost myself and any ability.

woman sick
Courtesy of Selina Samaniego
woman with chronic illness
Courtesy of Selina Samaniego

My doctor saw me, her eyes shocked and concerned. I was literally withering away. She told me, ‘I have one more Rheumatologist. He’s unconventional but we need to try it.’ With that, I was off to yet another doctor, but this time things were FINALLY different. He diagnosed me with Cutaneous Lupus Erythematosus and quickly created a treatment plan.

I thought this flare was life ending. I didn’t know if I could survive. I was a shell of myself. Barely hanging on. I started to make peace in my head not knowing how much more I could endure. I relived memories with my boys in my head hoping they would hold them close. I thought of my husband, knowing he’d miss me dearly, but rationalized that at least I wouldn’t burden him anymore.

Then, I thought of my little girl. She was so small. Not even talking yet. How would she remember me? We didn’t even have the chance to make memories yet. She’d only know me from stories, not by the sound of my voice or the smell of my hair. Who would teach her to do her hair? Who…. and then I began to fight. I refused to give up. I’d stare at her knowing I had to live for her. She was going to know me, we were going to make memories, and she was going to know my voice. I had to stop thinking of goodbyes and start thinking about how I was going to survive.

After a year of weekly methotrexate treatment, my body started to reject it. Upon getting off the injections, my body started to heal. The medicine stopped the flare and I no longer needed weekly shots. I was far from cured, but I began to be able to manage. I was no longer not functioning; it was tolerable.

woman in treatment
Courtesy of Selina Samaniego

However, there was still too much pain. The best Lupus meds couldn’t help ease. My primary doctor was at a loss. She expressed her confusion, stating that a lot of my symptoms sound like Lupus but also Ehlers Danlos Syndrome (Hypermobility). She never heard of someone having both. Her first action was to see if I had Postural Orthostatic Tachycardia Syndrome (POTs). If I did have this, it is likely related to EDS. But I would have to find a geneticist to get diagnosed, which was another challenge.

I went on to wear a heart monitor for a month and I was indeed diagnosed with POTS. A year later, I finally had my appointment with a geneticist and received the most answers I ever have. I learned I am a rare one; I have both a mixed connective tissue and a collegian disorder along with many of their comorbidities like fibromyalgia, TMJ, POTS, IBS, and a new one called Mast Cell Activation. My official diagnosis is Ehlers Danlos Syndrome Hypermobile Type (hEDS) with an overlay of Lupus, in which they both fight to be dominant. I have also struggled along the way with chronic anemia and have received infusions for this.

So, why now…why did they all suddenly appear? Well, that’s the one thing all my doctors can agree on. Every time I gave birth I woke it up a little. From my TMJ diagnosis years prior, to my sun issues, it is all part of the puzzle, including my hives in childhood (Mast Cell Activation). There were clues but there was no way to know how big the picture was.

I always felt I could deal with anything on my own, but not with this. I needed medical intervention. I had to get help. And I wouldn’t change a thing. Three healthy pregnancies and births that woke up my dormant beasts is still worth it for me. My kids are my everything. I will take this pain. I live with chronic illness, but I’m ALIVE because of my children. I’ve been balancing this life for years now. My kids are 7, 13, and 17 now. We’ve adjusted and have learned together. The beautiful thing is we are all still here, together, as a family.”

woman smiling
Courtesy of Selina Samaniego

This story was submitted to Love What Matters by Selina Samaniego You can .follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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