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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The Hope for Health Care

The Hope for Health Care

You may have heard about a little, low key health care bill that Republicans tried to pass in the Senate. And there’s a pretty good chance that if you have, you’ve heard some half-truths or blatant lies.

Right now you might be thinking, “Wow Mary-Faith, I thought you were a conservative! How could you be saying something like this about a Republican bill?”

To answer your shocked question, I consider myself to be a conservative-leaning independent. I am not tied down to any political party, and I do not particularly support one. But more than that, I have chronic illnesses. I am a walking, talking preexisting condition. Health care and insurance are big deals to me.

Politics. Isn’t. Everything. Yes, I of all people said that. Let it sink in. Our Founding Fathers didn’t really want politics (or pretty much anything) to happen this way, but that’s a story for another day.

I have emailed my senators. I received responses I was not satisfied with. To be honest, I’m not quite sure either of them even read what I had to say. My leaders that were elected to represent me did not listen to me. They chose their party. And that choice has weighed heavily on me ever since it came to light for me.

The Affordable Care Act (aka Obamacare) is messed up. But it is saving lives. It is providing Medicaid to those who desperately need health coverage. It is providing Medicare to the elderly. It is working for those with preexisting conditions. And this new bill will change that drastically, if not take it away completely.

That is not okay with me.

This is not about me. Yes, I am concerned about what could happen to my coverage. I am more concerned about people who have life-threatening diseases, who cannot work because of their illness, who could lose everything – including their lives.

So Republican senators, I am begging you to listen to us. I am begging you to consider your life on this new health care plan instead of on your over-the-top-with-protection government coverage plan. Picture yourself living like your constituents. Picture yourself living the lives of the “little people.” And if that doesn’t affect you, picture what could happen to your party at midterm elections. Think of the political repercussions passing a bad bill could have.

Think of people like me, who pay thousands of dollars in medical bills, even with insurance coverage. We are counting on you. We depend on you.

To Senators Rand Paul, Susan Collins, Mike Lee, and Jerry Moran, thank you for killing the Senate’s first attempt at this bill before there was even a vote. Thank you for taking step one. But now we need step two. We need the entire senate – not just Republicans – to come together and build and work and plan. We need bipartisan creation of a bill that will work for everyone. Because how can something work for everyone when half of the Senate is shut out? How can people’s actual lives be worth partisan wins and gloating? That should not even be a question that I have to ask.

So, senators, as you work to repeal and replace Obamacare, a plan that seemed to be failing completely until you actually introduced something just as bad if not worse, don’t think about your party or proving how much better you are than your colleagues on the other side of the aisle. Think about the people who put you in office – the same people whose support for you may be quickly waning.

Mental Health Awareness Month

Mental Health Awareness Month

“Write hard and clear about what hurts.”

– Ernest Hemingway

This is one of my favorite quotes. It is one that I try to live by. It is one that I believe can be therapeutic when followed. It is one that I now see I need to follow more closely.

May is Mental Health Awareness Month. Mental health is something that is close to my heart. Contributing to ending the stigma in some way is one of the greatest goals of my life. And because of that, I think there are some things that I need to say.

I have been dealing with depression and anxiety for about three years now. When I was first diagnosed, I was considered to be affected by what is known as “adjustment disorder” – which is essentially what occurs when something happens in your life that leads to mental health challenges. My adjustment disorder is thought to have come from my chronic physical health problems.

This is something that I do not talk about. Some of my family members and close friends do not know about this. But I think it’s something I need to talk about now. I often feel that staying silent is doing nothing but contributing to the stigma surrounding mental health. So who am I to not speak up?

If you have never experienced any mental health issues, let me do my best to explain this to you. Depression is not sadness. It is a deep hole of despair. It causes you to cry for no reason, to not want to leave the house, and to basically feel like doing nothing but sitting there staring into space. Anxiety is, in my opinion, just as bad. At its worst, it can be a constant feeling of panic. It causes you to second guess everything you say and do. You find yourself worrying to an irrational level about everything from final exams to what you are going to have for dinner. It causes panic attacks that can come out of nowhere. Although everyone experiences panic attacks differently, some common symptoms include shortness of breath, a racing heart rate, shaking, and an inability to think clearly.

I am not exaggerating. And I am not checking Google for definitions and symptoms. I am speaking from personal experience. This is all real. This is not in my head, or your head, or anyone’s head.

Over the past three years, I have come to better understand and cope with my mental illness to a certain degree. But I have not been “cured.” Every day is a battle, and a giant question mark. But I have come to know the ebb and flow of my brain’s strange impulses and deficiencies.

Perhaps that is why I am sitting here writing this. To tell you that there is hope, but it does not come if you don’t seek help. Without help, there is not hope. “Help” looks different for everyone who needs it. Maybe you need medicine. Maybe you need counseling. Maybe you need holistic treatment. But whatever it may be, please, please seek it and get it. This is nothing to be ashamed of. There is no shame in going to the doctor when you break your arm or have the flu. This is no different.

“Broken minds can be healed just the way broken bones and broken hearts are healed.”

– Jeffrey R. Holland

The brain is an organ, and a very complex one at that. Just as one may experience a problem with their heart, or lungs, or liver, so can one experience problems with their brain. One of the biggest problems with that is that the brain controls a lot. So if there is a problem with your brain, you may feel fatigued, and achy, and even have some problems with those other organs of yours. But this is a medical problem. You must understand that, whether you are going through this or not.

“Depression is a flaw in chemistry, not character.”

– Unknown

So, now that you know that having a problem with your brain is perfectly normal and that you should always seek help for it, please understand one more thing: A problem with your mental health has absolutely nothing to do with your spirituality. Even if what you are going through makes it hard to feel the Holy Ghost, or pray, or read the scriptures, or go to church. Some of the times that I have felt the pure love and understanding of Heavenly Father and Jesus Christ the most occurred when I first began dealing with depression and anxiety. They know what you are going through. When you cry, so do They. When you have a bad day, They hurt with you. They don’t want you to feel this way. But because of their perfect knowledge, They know that for whatever reason, it is necessary. They do not feel that your testimony is diminished, or that your level of spirituality has decreased. Neither should you.

“He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face.”

– Thomas S. Monson

Now, I would like to address those of you who have never dealt with any sort of mental health challenge. There is a second part to the above quote by Elder Jeffrey R. Holland:

“While God is at work making those repairs, the rest of us can help by being merciful, nonjudgmental, and kind.”

I know it is hard to understand something that you have not experienced, but please try. Ending the stigma will not just come from the willingness of those suffering to be more open. There must be a twofold solution. You are the second part. If you know someone who is going through something difficult with their mental health, please be kind. Please love them. And if you think you don’t know anyone in this situation, I can almost promise you that you do. You just don’t know it because that is the way they want it. That is why it is essential that we choose compassion in every situation, no matter what.

“Be kind, for everyone you meet is fighting a hard battle.”

– Plato

To all my mental health warriors out there, you are slaying the game. Getting up and living every day is a big deal. And I wish I could give you all big hugs and medals for it. But since I can’t, here are some things that have helped me through my own personal struggle:

Songs:

“Magnify” by We Are Messengers

“Trust in You” by Lauren Daigle

“Steady My Heart” by Kari Jobe

“Red Sea Road” by Ellie Holcomb

“Fight Song” by Rachel Platten

“Hills and Valleys” by Tauren Wells

“Bloom” by Grayson Reed

“Prince of Peace” by Hillsong United

“He Knows” by Jeremy Camp

“Hope in Front of Me” by Danny Gokey

“Warrior” by Demi Lovato

“Storms” by V. Rose

“Thy Will” by Hillary Scott

“Storyteller” by Morgan Harper Nichols and Jamie Grace

“I Have this Hope” by Tenth Avenue North (and basically every TAN song ever…trust me)

Qoutes:

“Be gentle with yourself. You’re doing the best you can” – Unknown

“The Lord doesn’t put us through this test just to give us a grade; He does it because the process will change us.” – Henry B. Eyring

“Don’t believe everything you think.” – Unknown

“In order to love who you are, you cannot hate the experiences that shaped you.” – Andrea Dykstra

“Do not fear. Fear is not of God.” – Al Carraway

“We cannot truly grasp the depth of our light, until we are shown our darkness.” – Danielle Doby

 

Also, this talk by Elder Holland is seriously the greatest thing ever. This video produced by the LDS Church, also featuring Elder Holland, is great as well.

 

“And here you are living / despite it all.”

– Rupi Kaur

My Vanderbilt Visit

My Vanderbilt Visit

vanderbilt

What do you do when you have all of your hopes riding on one person? I guess that’s really not fair, is it? To put your dependence on an imperfect human being who is just trying to do their job. But we do it every day. Some times more than others.

Last week I went to Nashville, Tennessee. It was great. I loved it. I was a total tourist. I saw every country music-related site in existence. I had the best time. But I did not go there to sight-see, or to take a picture with Taylor Swift’s exhibit at the Country Music Hall of Fame. I never would have gone to Nashville were it not for the Autonomic Dysfunction Center at the Vanderbilt University Medical Center.

As I have mentioned before, I have a chronic illness known as POTS (short for Postural Orthostatic Tachycardia Syndrome). POTS is a form of dysautonomia (or autonomic dysfunction). Dysautonomia refers to a group of diseases that cause your autonomic nervous system to function improperly. Your autonomic nervous system is responsible for all of the bodily functions you don’t have to think about, like breathing and your heart beating. It causes symptoms that include an increase in heart rate (especially upon standing), severe fatigue, shortness of breath, chest pain, confusion (or, as many refer to it, “brain fog”), dizziness, nausea, and migraines. This is not the only chronic illness I have, but it is by far the most intense and pervasive. These past few years since I first began dealing with POTS have been life-changing.

My dear cardiologist, who is absolutely amazing and by far the most knowledgeable physician on POTS in the area, has tried everything she can to help me. She has put me on every treatment, from prescription medicine to exercise regimens to compression hose to IV infusions. She recently told me that I have reached the maximum treatment level and that there is really nothing additional she can do for me. She suggested I give Vanderbilt a try, as several of her POTS patients have had success there and it is really the best place to go for any sort of autonomic issue in the southeast.

I was not excited to go to Vanderbilt, even though it meant a trip to Nashville and the possibility of more answers and treatment options. Perhaps I was experiencing a bit of foreshadowing.

Before my actual appointment with one of the Vanderbilt physicians, I would be doing testing to confirm my diagnosis and make sure that there was nothing else going on. For this testing to be accurate, I had to be off of most of my medications for three days prior to the appointment. I also had to skip an IV infusion. I was, to be quite honest, terrified of what this might bring, but I had no idea. For three days I had the full experience of POTS – untreated and unbridled. It was miserable. I could not stand for more than a few minutes without feeling extremely dizzy. I experienced intense nausea and fatigue. I was a mess. But I was a hopeful mess.

It became pretty clear after arriving at Vanderbilt that this would be an interesting visit. After signing in and taking a seat in the waiting room, we waited. And waited. Then I was registered at one of the desks in the waiting room. And then we waited some more. Finally, a nurse came to get me for my testing. Before the testing began, I was hooked up to two blood pressure monitors, an oxygen monitor, and an EKG (heart monitor) machine. After being told to relax (what great advice), I underwent the first test. My heart rate and blood pressure were monitored while I breathed in deeply for five seconds, then out for five seconds, over the course of one minute. This probably doesn’t sound like much, but for someone who lives with dizziness and shortness of breath on a daily basis, it was definitely uncomfortable. (Who knew a minute could last for so long?)

The next stage of testing, known as the Valsalva, consisted of me blowing continuously into a syringe for around 20 seconds. (Yes, this is just as bizarre as it sounds.) I was dreading this part of the testing. I have done similar, less intensive, testing at my allergist’s office multiple times before – and I usually fail. The nurse had told me that I would only do the Valsalva twice, unless my first two attempts were, for lack of a better term, not good enough. I was not surprised when she asked me to repeat the test a third time.

I was actually somewhat excited for the third and final portion of my testing – the tilt table. The tilt table is a bit infamous amongst dysautonomia patients, but its effects can be easily mimicked without using an actual tilt table. This was not this first time I had undergone this type of test, but it was the first time I got to do it with an actual tilt table. I was strapped onto a table-bed hybrid and then titled into the upright position. This is about ten times more disconcerting than it sounds. I have heard horror stories about tilt tables. Even if you survive being tilted upward, many patients cannot remain that way for the required length of time. I was to do everything within my power to remain upright (while still strapped to the table, just in case I passed out) for ten minutes. Perhaps not lasting the full ten minutes would have helped my case and showed how sick I really am. But I was determined. I was going to get through those ten minutes if it killed me. And I did (no death involved).

At the conclusion of my testing, I was sent back to the waiting room, where my parents and I waited for a while before I was taken back to an examination room. Before seeing the doctor, we saw a fellow (a step up from a medical resident – basically a medical student on the cusp of graduation) who went through my history with me. He questioned me very thoroughly about my past history of passing out to make sure there was nothing else going awry neurologically. He then performed my physical examination, which I have experienced so many times in my neurologist’s office that I could probably do it without instruction by now – walk in a straight line, touch my finger and then my nose, hold my arms out and don’t let him push them down. There were a few interesting new inclusions, such as having to remember the phrase “bad baby blue” over a period of several minutes and being poked with a safety pin to test my nerves. The fellow also informed us that my Valsalva testing was abnormal and that my heart rate increased by nearly fifty points during my tilt table testing (a POTS diagnosis typically requires an increase of thirty).

At this point, the brunt of my appointment was over. All that was left was the doctor coming in and confirming what I somehow knew all along: there is nothing else she can do. My local doctors are doing a fantastic job treating me. Maybe someday my POTS will get better, and maybe it won’t. She did have some interesting thoughts regarding whether POTS could potentially be an autoimmune disease (or at least related to the autoimmune system). But there were no answers. No magic pills. Just a confirmation of my diagnosis and that my treatment plan is the best that there is.

So I smiled at the doctor and the fellow. I thanked them. I said goodbye. And I walked down the hallway in tears. I drove almost six hours to find nothing new. Why did I even try?

Perhaps the better question could be why did I put all of my faith in this single individual? Why did I let my hope rest in an imperfect human? Why did I trust that my deepest and most desperately searched for answers could come from anyone other than my Heavenly Father?

“Trust in the Lord with all thine heart; and lean not unto thine own understanding.”

– Proverbs 3:5

Throughout the trials I have experienced from my health in my life, I have often felt that my answer is that there is not one. That He wants me here, in the midst of this pain, for a reason. I do not understand that reason, and perhaps I never will until I see Him again. But that is okay. As long as I trust Him and not my imperfect, hopelessly human self, I will be fine.

I cannot count the tender mercies He has given me. I see them every day. And I saw them after what I felt was a failed appointment. In that moment of bitter disappointment, Heavenly Father sent me four angels in the form of two sweet older couples waiting to check out along with us. All of them wished me well and told me I was too young to be sick. All of them put a smile on a face that had just seconds before felt tears.

He knows what we need, when we need it.

“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…for when I am weak, then am I strong”

– 2 Corinthians 12:9-10

No, I did not get the answer I wanted (or really any answer for that matter). But I heard a specialist tell me that I am not crazy. That there are a lot of people experiencing the exact same thing that I am, even if I don’t see them. Even if I feel alone. I gained new confidence in my team of doctors treating me locally. And I learned to trust just a little bit more.

“When fear comes knocking, there You’ll be my guard / When day breeds trouble, there You’ll hold my heart / Come storm or battle, God I know Your peace will meet me there”

– “Prince of Peace” by Hillsong United