My Chronic Illness Story

My Chronic Illness Story

I did not write this for pity. I don’t want anyone’s pity. The purpose of this post is two-fold. First, it explains why I’ve been MIA recently. Second, it explains things that I often briefly reference in other posts in full detail. I have written and re-written and struggled with this post, but it is important to me to share this story, my story, with you.

Lao Tzu said, “The journey of a thousand miles begins with one step.” My journey began when I was three. And, because it began with a swollen ankle, I suppose it did begin with one step.

Yes, it was at the tender age of three that the first of my chronic illnesses was discovered. It took seeing multiple doctors and undergoing multiple tests, but I was finally diagnosed with juvenile rheumatoid arthritis. Since my initial diagnosis, the name has been changed to juvenile idiopathic arthritis (JIA), “idiopathic” meaning that the cause is unknown. I was a toddler living with an illness commonly associated with the elderly. My ankles and knees would swell to huge sizes, feel painful and stiff, and sometimes require drainages and steroid injections. At the time, there was no pediatric rheumatologist anywhere near me, so my family had to travel nearly three hours, and later four hours, to see my physician. I don’t remember much from this time, and I’m glad.

During my childhood, I also dealt with asthma, though not on a very extreme scale. I did have some wheezing issues, and used an inhaler and a nebulizer, but I did not ever have severe attacks, nor was I ever really in danger of having one. It was more of a nuisance. A nuisance that got worse when the winter came and I got sick, which was fairly frequent considering the medication I took for my arthritis was immune-suppressing.

This might sound bad. It might make you frown and say, “Aw, poor Mary-Faith.” But to me it was not all that terrible. I was proud to tell my classmates that I was not afraid of needles because I got weekly shots and frequent blood tests. I went to school just like every other kid, and I was at the age and stage in school when if you missed a lot of time, you just made up your work and everybody missed you and got excited when you were back. It was normal for me, and it did not bother me. I was happy. I did not see myself as disabled or disadvantaged.

Then things changed.

It was the beginning of the sixth grade, the start of middle school; I was already freaked out enough. But just a few weeks into the school year, I noticed that I had hives. I had had hives before when I had gotten sick, so it didn’t seem like an incredibly big deal at first, all things considered. But then the hives got worse. I was covered (literally covered) head-to-toe. (I actually had hives in my scalp. They were so bad that I had to put anti-itch cream in my hair.) Not long after the hives appeared, I noticed a startling new symptom: violent stomach pain. It soon became clear that this was no run-of-the-mill stomach virus. My diet was reduced to only the blandest food options, and even those would cause me pain. We stayed in touch with my pediatrician, and it became clear to all of us that something was wrong with me. We just didn’t know what, or how to treat it. So I suffered through my enigmatic stomach pain for a bit longer.

All that itching and gut-wrenching (literally) pain came to a head one day. I do not remember much. I just remember that I had gotten to the point that I could not stay home by myself. I was sitting in the recliner, my father next to me. I was nauseated and cramping and itching and basically falling apart. Through contorting my body to try to find some comfort and trying to ignore the pain, I remember my father giving me a priesthood blessing. That, and the fact that he was voluntarily watching Say Yes to the Dress with me, is how I knew he was very, very worried. Sometime after my mother got home from work that day, I tried to eat a piece of toast with nothing on it. That piece of toast caused some of the most brutal pain I have ever experienced in my life. That was when we knew I needed to be admitted to the hospital.

Thankfully, my pediatrician was on call and was able to set everything up so I wouldn’t have to go through the emergency room (which was full of H1N1-infected patients at the time). At first, the group of residents treating me didn’t believe me. In fact, the head resident thought I was trying to get attention and tried to bribe me with Chick-Fil-A. But after much testing, it was discovered that I had helicobacter pylori (h. pylori), a bacterial infection of the stomach. My allergist said that I was only the third case she had seen with both h. pylori and hives simultaneously.

During my h. pylori stint, I had to stop many of my medications, including what I took for JIA. This led to joint swelling like I had never seen. It took multiple joint drainages and injections to get things back to normal. But “normal” was a relative term for what I was about to experience.

On the heels of my hospital stay, I got a bad viral respiratory infection. During this infection, I got one of the worst headaches of my life (that I thankfully have no memory of). My doctor assured me that it was a result of the infection, and it would subside. But the headaches kept coming, over and over again, to the point that I had to see a neurologist. My dear pediatric neurologist (who I swear is one of the best in his field and I absolutely adore) treated me for my new migraines. But he noticed something else. My heart rate was abnormal. It would spike upon standing by over thirty beats per minute. This is when he introduced the idea of dysautonomia to me. This is when my life changed.

The autonomic nervous system is a pretty important part of your body, in the sense that it controls many of your organs and all of the functions that you don’t have to think about, like breathing. But sometimes it doesn’t work right. Sometimes it causes your blood to not flow quickly enough to your head when you stand. In other words, sometimes it causes you to pass out.

I took this whole dysautonomia thing in stride. It wasn’t really a problem for me, at least in my mind. I was more focused on my chronic migraines – that is, until I almost lost consciousness when I was a high school freshman. Thankfully, I was at home. My father was able to half-carry me to a chair. That was when things became real to me. I had a problem (well, another one).

My official form of dysautonomia is called Postural Orthostatic Tachycardia Syndrome, or POTS. It’s not a common disease, and rarely diagnosed properly. It is characterized by a heart rate that jumps more than thirty beats per minute upon standing. It causes shortness of breath, chest pain, dizziness, and severe fatigue. It is treated in a multitude of ways, none of which are very effective. Today I am on two different medications for POTS. Without these two pills, I would probably be unable to remain upright for more than .02 seconds. I now also receive twice weekly IV infusions of sodium chloride, which I have found helpful. In addition to medical treatments, I also have to drink insane amounts of water to stay hydrated, as well as eat a high sodium diet to help with fluid retention. This is my life now. This is my normal. But it’s not normal. All of this keeps me from needing to go to the emergency room. But I still spend most of my time at home (or, more accurately, in bed), I still have low energy and high fatigue, I still have severe heat intolerance, and I still have chronic migraines.

Chronic illness has plagued my life since my early years, but nothing has compared to POTS. It is like a prison warden standing over me, watching my every move. It has taken away my life and given me a new one.

blooming

{ Image via Pinterest }

Recently, my rheumatologist confirmed something I had suspected for some time now: I have Ehlers-Danlos Syndrome (EDS). EDS is commonly seen in POTS patients. In my case, I have Type 3, which is the hypermobility type. This means that I am insanely flexible and can actually turn my arm three hundred sixty degrees. (Maybe I should go on America’s Got Talent with that.) My joints pop, and I feel strange twinges of pain that are different from what I feel from arthritis. I will be seeing a geneticist soon for further testing to ensure that my EDS is not more serious.

And in all of this I am grateful. I am grateful for the tender mercies of the Lord. I am grateful for the beautiful souls I have met on this journey. Above all, I am grateful that my Heavenly Father has allowed me to live with this long- (perhaps life-) lasting trial. I see Him teach me through it every day. I see Him lead me to greater compassion and understanding, for myself and for others. And I hear Him remind me of the words of 2 Corinthians 12:9-10:

“And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake:  for when I am weak, then am I strong.”

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2 thoughts on “My Chronic Illness Story

  1. Dear Mary-Faith,
    Thank you very much for sharing your story, I cannot help thinking of you as an inspiration of bravery and strength! Your faith is admirable and I will keep you in my prayers from now on.
    I was reading your post next to me brother (who is a doctor-to-be) and he was explaining me some things as well hehe

    I couldn’t help smiling when you mentioned “Say yes to the dress” haha I love it, specially when I’m low in my moods and my little brother watch it along with me sometimes- that’s how I know he loves me haha
    Keep strong and writing -this was so good!

    Alessandra | In My Fearless Twenties 🌸

    Liked by 1 person

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