Living With An Autoimmune Disease: Sjogren's Syndrome
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Health and Wellness

Living With An Autoimmune Disease: Sjogren's Syndrome

A brief look into the autoimmune world and my life with Sjogren's

Living With An Autoimmune Disease: Sjogren's Syndrome

I've had my share of hurdles in the health department my whole life. It's a roll of a dice for us humans. Will we be fairly healthy throughout our lives till old age? Or will we be exposed at a younger age, sometimes birth. Asthma was my first hurdle, a hard one, but I eventually managed. Then, when I was a 16-year-old in High School, I started randomly passing out, gaining my share of concussions at one point. After tons of tests and doctor's appointments, I was eventually diagnosed with Syncope and Mitral Valve Prolapse (when the valve doesn't close all the way, causing regurgitation of the blood back into the left atrium. Currently now have ¾ valves leaking).

To this day, I have my moments, my days, but I take my meds and go on with life. Around 2011/2012, I started to get ill. I'd experience random symptoms but always would just go about my life, not really searching further. When something manifested, I dealt with it till it was gone.

Fast-forward to 2016, my symptoms had gotten worse and more frequent. I didn't feel the way a fairly healthy 26-year-old should feel. I started to feel crazy. Was it all in my head? After telling my mom (who was fairly newly diagnosed with Lupus) my symptoms similar to hers, she became suspicious that I also had an autoimmune disease. She asked my doctor to run my ANA and some other tests, and shortly after, I was diagnosed with Sjogren's Syndrome.

The only thing I knew about it then was that it was the disease Venus Williams had that caused her to drop out of the U.S opening. I was soon to find out what it all involved, and to this day, I'm still learning.

Sjogren's Syndrome is a systematic autoimmune disease that can affect the entire body. To those who have heard of it, it's usually "Isn't that the dry mouth and eyes disease?" Well, yes, if you're lucky. That's just the bare minimum of it. Besides the dryness, other symptoms are chronic profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas. It's known for causing many neurological problems, headaches/memory loss, peripheral neuropathy, arthritis, muscle, bone, and joint pain. Also, lung issues, along with making you a higher risk for non-Hodgkins lymphoma, abnormal liver function, brain fog, dental issues, interstitial cystitis (one of the worst things I've dealt with), and many more.

Over the past several years, I would go into my fair share of flares. On bad days you push through the best you can. It has definitely affected my social and work life over time, but I really do always try my best to push myself. The whole "I have it, it doesn't have me" attitude. There is plenty of days that go out the window, you're just not able to function, but I can say I try.

These past few months have been some of my hardest. I was able to stay safe during my pregnancy and the pandemic, but at the beginning of January, my husband and I were hit with Covid. I was definitely nervous due to my underlying medical conditions, especially asthma and having a heart condition. Surprisingly, besides the normal symptoms, I only did my breathing machine twice. I thought I dodged a bullet until the next week I was thrown into a flare from it and haven't been able to get out of it since. I was introduced to another side of Sjogren's.

Within the next two weeks, I had experienced all the following symptoms at once.

  • Itchy skin
  • Skin felt sunburnt
  • Chest and lungs felt heavy, ready to explode
  • Severe migraines
  • Nose bleeds to where it was filling my throat
  • Severe middle back pain (spinal area)
  • Rashes on face, hands, and feet
  • Change in vision
  • Nausea
  • Dizzy/feeling out of my body
  • Severe fatigue (besides my narcolepsy)
  • Leg pain/issues walking
  • Swollen/burning hot feet with numb toes
  • Sore throat/trouble swallowing and eating
  • Hand pain/stiffness/unable to use
  • Swollen lips/felt burnt and mouth sores
  • Stomach pain

Sometimes, you have so many symptoms during a flare; you start to think yourself your nuts. How can a person experience that all at once? But we do, and we're not nuts, and anyone who thinks that doesn't deserve to be a part of our good days.

This is just some of what myself and others go through. When I meet my new doctor at the end of this month, I hope that I can get a treatment that works for me and helps me become a better version of myself, not just for myself but my family.

It's always good to educate yourself, advocate for yourself, and listen to your body. If you ever have any of these symptoms, it doesn't hurt to get checked out, only to neglect yourself. Your health is one of THE most important things, don't take it for granted, because there are days, we really do wish the day away. We just want to sleep so we don't have to feel the pain if sleep even comes. My goal is not just to survive my days but live them the best I can, but if there is a day I can't, be patient with me, with us. It's a shitty feeling having your own body attack you; we don't need it from loved ones.

I believe in pushing yourself the best you can though, make it your bitch, don't become it’s bitch. There are over 80 Autoimmune Diseases out there, and boy, are they tough, but the people who fight them daily, well, we're tougher.

Though this is only a small look into the autoimmune world, I hope it brings some awareness and understanding to the loved ones of those who suffer.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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