Kate Bryant

@kate-bryant | contributor
Kate Bryant is mom to a spunky 5-year-old in Upstate NY. She has SLE (lupus) and her son has PFAPA (a periodic fever syndrome). She writes on her site itsnotjustavirus.com about autoimmune and auto-inflammatory disorders, and healthy tips for those with chronic health issues. She has an MSEd & BS in Health Education.
Kate Bryant

What Autoimmune Disease and Lupus Feels Like

Nobody ever really asks this — but what’s it like being autoimmune? Nobody asks because most of the time our struggles are invisible. The rest of the world may be afraid of attacks in their cities or villages by criminals or terrorists. We may have those fears as well, but our greatest enemy is our own body. Our body that fights so hard to demolish itself. Autoimmunity in lupus is fatigue. It’s fatigue that only we know. It’s not “being tired,” and it’s not even exhaustion like after you have a newborn baby (I have been there, done that with a “non-sleeper”). It’s so far beyond all those things it’s hard to share with someone. Autoimmunity in lupus is malaise. The skin-crawling, low fever, flu-like feelings that last for extended periods of time. Autoimmunity in lupus is pain. Joint pain that makes me feel like I am 100 years old. It’s mouth and nasal sores that are painful and difficult to heal. It’s urine that you look at in the toilet and wonder if it’s your kidneys taking a turn. It’s the severe pain in your bladder from inflammation. What about those pains every breath you take? Pleurisy — inflammation in the lung lining. That’s only the physical. Autoimmunity in lupus can be wondering when you will die. You think it will (probably) be slow and painful. You know you are different, but nobody else knows (unless you tell them). You know you will likely die before everyone around you. You feel the loss of control in your body. Your body is attacking itself. We do our best with medications, diet and supplements to control it. However, at the end of the day your body is out of control. You are just along for the ride. You will always be a “mystery” or “rare” case of something or other in the medical world. It goes from your first symptoms before diagnosis all the way through your changing disease. Your reactions to treatment and even standard appointments become an “unusual” experience. Every doctor I have been to (including my rheumatologist) has told me how “rare” I am. I have experienced “rare” side effects from a lupus drug. Those effects have led me to be “rare” with my eye doctors and specialists. I have been rare for some time now (supposedly). But really I am not rare because these are the same things that many others who are autoimmune go through. I have had active lupus symptoms since I was 15 years old. I didn’t get a diagnosis until I was 21. I am now 36 years old. I have had a child as well, which created a whole new lupus for me. It’s been 21 years of autoimmunity. All of the years have been in relative silence. I do share my feelings with my husband and some family members. Most are just as “afraid” of the disease as I am. Will these symptoms subside or turn into something that is the end? It’s everyone’s fear. It’s truly “the unknown.” Kate and her son Parker Of course, there are good days and good months for that matter. But you would never know the difference unless I were to tell you. I write about my experience and (hopefully) provide others with tips and tricks to live better with autoimmunity. It’s how I speak. Autoimmunity is a silent reaction. We feel it, but it doesn’t yell on the outside of most of us. Because of its silence we may feel we, too, should be silent. It’s nothing to be silent about. It’s real. Just as real as something that can be seen on the outside of the body. We are strong and we are resilient. We fear like everyone else, but we fight the good fight, too. Stay strong and show your strength. You don’t have to be silent. *Sign up for our Chronic Illness Newsletter*

Kate Bryant

Receiving a PFAPA Diagnosis for Your Child

  Kate’s son. The thermometer beeped as my husband and I waited in sickened anticipation. Beep beep. Two beeps are bad. Two beeps mean his temperature is above 101. We looked together… 104. Panic. What do we do? This was our third month in a row with periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis (PFAPA). It was our first Thanksgiving with our son. He was only 10 months old and he had an autoimmune disorder — a periodic fever syndrome (PFS). He didn’t have a diagnosis then, and we were still searching for an answer. You may have a child with a PFAPA, or maybe a child suffering from a different disorder. Either way, you are familiar with some version of this story. The sick feeling in the pit of your stomach because you truly know there is something wrong with your child. You know it isn’t normal. No doctors have been able to give you an answer. At that point, we were new to fevers — especially high ones. We did some pretty naive things. We filled the tub with lukewarm water and put our screaming child in it hoping to cool him down. It makes no difference whatsoever. We dosed him with ibuprofen and acetaminophen (in rotation) for a two-degree drop in temperature that lasted four hours. What do you do? You take your child to the pediatrician repeatedly, right? You keep asking why the child doesn’t seem to have signs of illness but is clearly not normal or OK. They check your child over. They send you away without a diagnosis — other than “it’s just a virus.” After awhile you feel like giving up. But it continues. We powered through 10 more months on our own without a diagnosis. Nothing was getting better. When he started walking we realized he had joint pain with his PFAPA fevers. His fevers were up to 105 during some episodes. They lasted for five days and were relentless. They returned every 23 days. We needed an answer. If you are searching for answers to an undiagnosed condition I am sure you feel the same. We tracked Parker’s symptoms and episodes with a thorough system. We provided a health journal containing his history and a symptom tracker to get answers. We were able to get the doctor to listen to us and see what we saw. We got our answer. We were able to know what was wrong with our child and knew ways to comfort and ease episodes. What’s the difference between a PFAPA fever and an “illness” fever? Children with viruses will have lower grade fevers for less than three days. Generally, those fevers are 102 or under. If there is an underlying bacterial infection the fever might last a few days more. With antibiotic treatment, this will go away. Children also show signs of a cold like a runny nose, cough or upset stomach. PFAPA children do not. A PFAPA fever ranges from 100-105 and is relentless for four to six days and is non-responsive to medication. So what’s the big deal with a fever? That’s it? That’s the type of response we got from many people at first. We started skipping functions and altering our schedule around his episodes. Why? His tonsils are so swollen it’s hard to understand him when he talks. He has at least three mouth sores plus sores on his tonsils. He has lower leg and hip pain, so severe he doesn’t want to walk. There are times when he has to be carried to the bathroom (he is 5 years old). He has night terrors before and after an episode. He can’t eat and the medications upset his stomach sometimes causing vomiting. This happens for five days plus a few days recovery. He is awake most of the night for two to three nights of the episode. And his mood and behavior are altered. He’s miserable and angry. Wouldn’t you be? Think of how your child is with a standard illness, then imagine it 200 times worse. What can be done? Occasionally a dose of prednisone can end an episode. But it has to be given a day before the episode begins. If used too frequently, it can actually increase the episodes. If you don’t give it the day before the episode begins, it won’t work. There is nothing more you can do. You do your best with comfort during each episode. My tips for parents with kids with chronic illness: 1) Take help when it’s offered. It’s not selfish to take a break. It will clear your mind and help you take better care of your child. 2) Take shifts with your spouse or partner in caring for your child. Leaving it all to one parent 24-hours a day is overwhelming. If you are a single parent, you should try and ask for help. Medication mistakes and more can happen. Having another person to help with caregiving is better than one running on an hour of sleep for the week. 3) Still feeling overwhelmed? Take a break and step away. Let your child watch some TV, or rest in their bed and step away. It helps to clear your mind to continue care. It’s often necessary. What do you do that helps with care? What condition does your child have? Follow this journey on Its Not Just a Virus The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.