The Isolation That Never Ends

The Isolation That Never Ends

You can’t leave the house unless you absolutely have to. You’re worried about your health. You feel cut off from the outside world and from other people. You struggle to work or complete school work from home. You look for things to do to stay occupied. You feel frustrated and like your mental health is suffering the consequences.

Is that how quarantine has been for you? It seems to be a general consensus among many.

That’s how every day is for me.

It is strange to know that the whole world is experiencing just a taste of what my life has been like for over two decades with multiple chronic illnesses. Part of me thinks this will make people more empathetic. Part of me feels heartbroken that anyone else would have to go through this.

For years, I have rarely left the house unless it was for a medical appointment. If I went out for something else, it was carefully planned and something I desperately wanted to do. I have completed school from home with various methods (primarily online) since sixth grade. I can go weeks, sometimes months, without seeing someone who is not a family member or healthcare professional.

You feel alone right now. I feel alone all the time.

I didn’t write this to guilt anyone or get lots of nice messages. I wrote this because I wanted you to just think a little bit more. This is going to end for you. Your life will go back to normal (or whatever normal looks like from now on). For me and so, so many other people, that will not happen. We will continue living in an isolation we did not choose. So please, don’t forget about us.

Get Well Someday

Get Well Someday

hospital

“This won’t go back to normal / If it ever was”

– “Soon You’ll Get Better” by Taylor Swift ft. Dixie Chicks

 

As of today, when I am now writing this, it has been ten weeks and four days since I was discharged from the hospital following treatment for an intense migraine. I feel very strongly that I should write about this – that I want to write about this – but I almost don’t know how to. The bruises on my arms from the IVs and the blood draws are gone now, but I still feel bruised. Parts of my time in the hospital, and the time that led up to it, seem black to me now, but thinking about the entire experience conjures an anxious feeling in me that is almost akin to a fight-or-flight response. I still haven’t decided between fight and flight. I suppose my body automatically chose fight for me, but my brain is still leaning towards flight. I don’t think I will ever be able to truly convey what this time was like for me. If you did not live it, or at least live it with me, I don’t think you will ever be able to understand. Unless my life mirrors yours. To my fellow migraine sufferers, my fellow spoonies, I salute you. We’re pretty tough, if you ask me.

This all began in September, perhaps the second week or so. Exact details are completely lost to me now. I got a migraine. This is not exactly something to write home about, seeing as I live with chronic migraine and deal with a constant headache that fluctuates to a full-blown migraine multiple times a week. This particular migraine did not go away, which isn’t out of the ordinary for me either. Several times a year, I will have a migraine that lasts for about a week, at which point I contact my neurologist and I go in for an IV infusion of multiple medications to break what I have come to call the “migraine cycle.”

There was a hitch in this plan this time. I had recently begun seeing a new neurologist. It wasn’t that I didn’t like my old neurologist, or that I thought he wasn’t doing enough. It was just that nothing was changing and I was frustrated and I wanted someone else to look at the situation. Initially, I had been satisfied with the care I was receiving from the new office. I had gone into the office for an infusion over the summer to break a migraine cycle. These positive feelings changed rather quickly when the new office basically did nothing to help me. For weeks, I lived with this migraine. I endured this pain. They did not return phone calls. They were slow to set up an infusion. It was awful.

At this point, it was October. Yes, October. It had been a month. And there was something different about this migraine. It was an ever-present companion. The pain level ebbed and flowed. At times it was better and at times it worse, but it never left me. I started to feel desperate. I felt like I was going crazy. I rested in dark rooms. I did yoga. I used ice packs and cold cloths. I even went to urgent care for an injection of Toradol, an anti-inflammatory medication commonly given for migraine pain-relief. The next day I took my Shakespeare midterm because I felt slightly better and I didn’t want to have to deal with putting it off and thinking about it later. The day after that, my new neurologist’s office finally got in touch with us and said I could come in for an infusion that day. I was given a combination of medications that I had taken before and gotten relief from.

That was Wednesday. Everything changed Thursday. I woke up at four o’clock in the morning confused. I wasn’t really sure why I was awake, and then I realized it was because of my head. The pain had woken me up. I tried to fall back asleep but I couldn’t. I couldn’t do anything really, other than wake my mom up and tell her that something was wrong. I tried to lay back down again, but I couldn’t stay still. My father gave me a priesthood blessing. I took Tylenol. I kept grabbing my head. At some point I sat up in bed and started rocking back in forth. I always try to avoid crying for any reason when I have a migraine because it makes the pain worse, but for the first time in my life the pain was so bad that I was involuntarily shedding tears. The words of a Taylor Swift song, the same one I quoted at the beginning of this post, kept running through my head. When I have a migraine, the pain is always concentrated in my forehead but this time the entire right side of my head was hurting.

And then suddenly the pain subsided, just a little. Enough to make me think that instead of rushing to the emergency room, we could start by going to urgent care. The same doctor who saw me a few days before when I got the Toradol injection was there, and she wasn’t wasting any time. She noticed the entire right side of my head, where the pain was so bad, was red – from my cheek to the skin behind my ear. She called the emergency room and sent me there immediately with papers explaining what she had seen.

My experience at the ER was not a pleasant one. Despite the severity of my symptoms and how they differed from what I was used to, my nurse was disinterested at best. The attending physician wrote me off as just another migraine patient and ordered the typical “migraine cocktail” they give in the ER. The only person who seemed particularly concerned was a medical student working with the attending. By the time I had received the medication they had ordered, I didn’t feel “cured” by any means, but my pain level had decreased. Combine that with the fact that I was so sedated I could barely walk and I was ready to go home. It wasn’t perfect but I hoped it would be enough.

My struggle with my new neurologist continued. I was given new medication to try, but I was told that if that didn’t work, there was basically nothing else they could do. It was at that point that I made an appointment with my old neurologist. While waiting for that appointment, I continued to be in extreme pain. I was barely able to work on assignments for school. I was barely able to do anything, really. There were multiple times that I debated returning to the ER. One day, when things were particularly bad and I was back in I-think-I’m-losing-my-mind-mode, my dad gave me another priesthood blessing. I am not exaggerating when I say I experienced a miracle that day. My pain decreased more than it had in weeks. I was able to rest that night. I was able to keep going. I know this was a tender mercy from my Heavenly Father.

Finally, on October 29th, I saw my old neurologist. I think he could tell something was wrong, aside from the fact that I had told him a very long (and, to me, traumatizing) story. I always brush off what is wrong. I always say I am okay when I am not. But that day I looked in his eyes and told him he had to do something because I could not continue in that state. He submitted orders for me to be admitted to the hospital the next day.

And so, after waiting half of the next day for the hospital to call and say that they had a bed ready, I was admitted. I was, somewhat shockingly, happy to be there. I knew that this was the first step to me feeling better, and I was willing to accept being in the hospital if that’s what it took. By the time I was admitted it was rather late, so only one thing happened of note that day: my port was accessed. I had my port implanted because I get IV infusions regularly and I have horrible veins. However, when you’re in the hospital, you can’t just simply have the nurse access your port, as one would expect. First the attending physician has to put in an order for your port to be accessed instead of just a regular old IV. Then you wait several hours. Then the “IV Team” comes to see you. They are not just regular nurses – they are IV professionals, and, by extension, port professionals. The two members of the IV Team who came to see me, Bob and Dave, quite honestly deserve their own reality show on TLC. Bob was training Dave, who was new to the hospital, and Bob had quite obviously missed his true calling as a stand-up comedian. He kept up a running commentary while preparing to stick a needle in my chest. At one point he almost fell on top of the chair my dad was sitting in. It was an experience, and it was the exact hilarity that I needed after having just been admitted to the hospital for the worst pain of my life.

My neurologist was a bit concerned that there could be another cause for the severity of my pain, so he ordered several tests. The problem was that if I had something like a ruptured blood vessel, the migraine medication he would give me would worsen that. Therefore, everything had to be ruled out. This was how I ended up getting a dose of Ativan at six o’clock in the morning on my second day in the hospital because I have slight claustrophobia that could bother me during the MRV (a form of MRI that looks specifically at the vessels in the brain). (To be clear, I have had more MRIs in my life than I can count, and I have not needed any medication to assist me since I was, like, six. The doctor was worried about me.) Before my MRV, I was taken to get a CT scan where I met a super-nice, super-gregarious nurse who, upon hearing what I was there for, told me, “Well, you’re just falling apart, aren’t you?!” (Yes, yes I am.) I was supposed to go to the MRV immediately afterwards, but they weren’t ready for me. In fact, they weren’t ready for me for hours. Meaning the Ativan I had taken was pointless. To top it off, they gave me another dose of Ativan. So I was feeling nice and calm for that MRV, which was actually a highlight of my time in the hospital. Those of you who have had any form of MRI done before know that it is very loud. I think somehow I ended up in the pediatric unit, and the very-nice technician asked me if I wanted headphones during the test, or if I wanted to listen to music, asking, “You like pop music, right?” I was ready to sob right there on the spot. That day, Selena Gomez, Halsey, and the Jonas Brothers got me through my ordeal.

By the time I got back to my hospital room, the attending physician (who just happened to my own neurologist on this day) had determined that my test results were okay and I could proceed with the planned course of treatment. This treatment was DHE, a fairly extreme migraine treatment that is typically given via IV. DHE can be given in outpatient infusion centers, but getting it in the hospital is preferable because of the extreme side effects it can cause. I was feeling very optimistic when I began the DHE even though I knew it could be intense. However, it was only a few hours before I started noticing those dreaded side effects everyone talked about. I was hit with extreme nausea that was almost unbearable. My nurse brought me crackers and soda and hesitantly informed me that sometimes the nausea can be so bad that patients cannot continue the treatment. Eventually, I had to take a dose of Phenergan, the anti-nausea medication that had been prescribed for me. I’ve taken Phenergan in the past and I’ve had some mild issues with restlessness because of it. But what happened that night was unlike anything I have ever experienced. I was up all night with severe muscle spasms that would not stop. What made it even better was that Phenergan is a very sedating medication…as is Ativan, which I had had an extra dose of. So, when I tried to get up and move around, I was quite literally flopping back in my hospital bed because I didn’t have the strength to get up. This seems really funny to me now, but at the time I thought I had reached my breaking point. At some point I managed to get a few hours of sleep. I woke up that morning feeling horrible, vomited, and went back to sleep. Later that day, my mom mentioned something that the doctor said when he made his rounds that day and I had absolutely no memory of it. Thankfully, they switched my Phenergan to Zofran, which I have no problems with.

At some point during all of this madness, I got another visit from Bob and Dave. My neurologist wanted to give me some additional medication to attack the migraine that was not “compatible” with DHE, meaning it could not also be run into my port. I needed another IV, but since I am such a hard stick, they sent in the IV team with their fancy ultrasound machine to find a vein. And find one they did, although it was quite deep and a bit difficult to get to. This IV worked fine for approximately twenty-four hours, at which point it began to hurt. My nurse checked it and ensured and that it was still in the vein, but sent the IV team to look for another possible spot. This time I was visited by another, less entertaining member, who found another, much less painful spot for my IV. Getting stuck twice was worth it when the first IV began to hurt more than my head.

I can’t quite accurately describe everything that happened in the hospital. Everything has bled together in my memory. I also feel like a part of me has blocked some of it out because it was a very painful time, not just physically, but emotionally as well. I can remember bits and pieces, like when I went for another MRI and said I could walk instead of using a wheelchair and almost fell over. I remember that the food was basically inedible and my parents had to keep going to get me pound cakes and brownies from Starbucks. I remember my favorite daytime nurse who made me laugh so hard at one point that everything felt okay for a second. I remember my favorite nighttime nurse who tried her best to let me get as much rest as possible even though they have to come check my vitals every few hours. I remember getting my blood drawn in the middle of the night so the results would be ready for the doctor in the morning. I remember most of the side effects of the DHE fading, except for the leg cramps which only bothered me when I stood up (which wasn’t very often). I remember my mom reading texts and Facebook messages from family and friends to me. I remember attempting to watch Live PD but falling asleep.

Most of all, I remember thinking I would go home one day. But then my pain increased again. And the attending came back and said he had talked to my neurologist on the phone and he had said I had to stay another day. The second he left the room, I dissolved into tears because part of my mind thought those twenty-four hours meant everything. And then I remember finally being discharged the next day. I was not completely well. On that magical scale of one to ten, my pain level had decreased to about a four. That was good enough for the new attending. And at that point, it was good enough for me too.

I cannot fully explain the ways in which this has changed me. My migraines are mostly back to normal now. My pain is no longer unbearable. They have returned to their natural rhythm. But nothing else has. The only thing I have done since I have left the hospital is go to see two movies and go the store a few times. All of these excursions have left me in bed for two days following. I spent some time with my extended family recently and it was a true highlight for me after all that I’ve been through. It knocked me out for three days. I can barely leave the house for medical appointments. I went through a long period of time when I couldn’t even read. If you know me, you know this was like a death sentence. I have very little physical strength. And to be honest, I have very little emotional strength left at this point.

I had a very profound thought during all of this. I would go so far as to call it a revelation. It happened shortly before I was admitted to the hospital. I was praying, pleading with Heavenly Father not so much for relief, but for comfort. And it was then that I realized that He had always been with me – that Jesus had always been with me. They were with me in my room on that Thursday morning when the pain was so bad that I genuinely thought I might be dying. They were there with me in the emergency room. They would be there with me in the hospital. They would be with afterwards. Even if I felt alone, I would not be. Even if I felt like I couldn’t keep going, I would. They would make sure of that.

“When You don’t move the mountains I’m needing You to move / When You don’t part the waters I wish I could walk through / When You don’t give me answers as I cry out to You / I will trust in You”

– “Trust in You” by Lauren Daigle

My Migraine Madness

My Migraine Madness

“I remember when your head caught flame…”

– “Buzzcut Season” by Lorde

migraine pic edited

This is not a pretty picture – quite literally. But it is an honest one; perhaps the most honest one I have ever shared. It was taken after one of three infusions my neurologist ordered for me to have done, not at my regular infusion center, but at the hospital. It was every bit as fun as it looks.

This was after the first infusion, to be specific; after the second two even looking at my phone was out of the question.  I have no idea how long I went without looking at my phone. All of the days ran together. All I remember was pain. I experienced some of the most intense migraines I have ever had. I fell behind in my summer class (because it’s a bit difficult to work on your school work when you’re in this state, and even harder when the class is online). I only wore pajamas. Getting out of bed was an achievement, and being able to watch TV was exciting. A whole movie? I was living.

There is no way to truly explain what it is like to have a migraine every single day for at least a month (maybe more; like I said, I lost track of time). It’s happened to me before, but it hasn’t been this painful. I was begging for my neurologist to admit me to the hospital. But he is the best in the area for a reason. The treatment that I would be admitted to the hospital for was not exactly standard…it had some extreme potential side effects, side effects that would terrify me if I was in a normal mental state. Going to the emergency room was out of the question for me. Even when I was in tears from pain, even when I was asking my father for another priesthood blessing, I would not go sit in a lobby for three hours, only to be taken to a little curtained-off corner, given pain medicine that would no doubt make me ill, and be sent on my not-so-merry way.

The second and third infusions were my last option. It was the same infusion, administered over two days, and it was a medicine I had never been given before. It made me feel awful (apparently it could get worse). But it worked. Slowly. Maybe.

It still hurts some. Maybe it always will.

The only thing I can trace this horrific cycle to is a  new medicine I had just started. Its name began with the letter “p.” I will tell anyone who will listen that the “p” stands for poison.

This is where I’ve disappeared to. This is why I couldn’t celebrate the Fourth of July (and Captain America’s 100th birthday, of course), one of my favorite holidays. This is why when family came to visit I couldn’t see them. This is why I couldn’t even email my professor; my mom had to do it.

the birds

{ Image via Buzzfeed }

I’m a big fan of Alfred Hitchcock. The first movie of his that I ever watched (which remains my favorite to this day) was The Birds. No, it is not scary. The “special effects” are so basic that they are not even worthy of that term. But there is one scene towards the end when they are trying to escape – you guessed it – the birds after Tippi Hedren’s character has just been attacked by them. When she steps outside and sees them all around, she hysterically half-yells, “No, no, NO.” Perhaps I am Tippi Hedren now. Maybe whenever I feel a twinge in my forehead, I will see the birds. Or maybe I won’t. Maybe that’s just the way it is, and I have accepted it.

Who knows? Alfred isn’t here anymore, although he certainly could’ve written my horror story.

20 Facts for 20 Years

20 Facts for 20 Years

In honor of officially entering my twenties recently (what???), I thought I would share twenty random facts about myself with you all – one for each year. I hope you all enjoy getting to know my strange self better. 😉

20.jpg

  1. My favorite celebrity couples are Tom Hanks & Rita Wilson and Ryan Reynolds & Blake Lively.
  2. My favorite Taylor Swift song from each album of hers (in chronological order) is “Stay Beautiful,” “White Horse,” “Mine,” “All Too Well,” “Out of the Woods,” and “New Years Day.”
  3. I am somewhat of a quote collector and have a ton of favorites, but one that I always remember is: “The question isn’t who is going to let me; it’s who is going to stop me.” – Ayn Rand
  4. I’ve been interested in politics for several years now, but I’ve become very passionate about several social issues within the past year.
  5. My dream job is writing about politics for The Washington Post while doing some political commentary for NBC.
  6. Sometimes I get freaked out watching Gilmore Girls because I literally am Rory Gilmore, so it feels a little bit like I’m watching a TV show about my life.
  7. I read. Every genre (especially fantasy). All the time.
  8. My favorite colors are pink, gold, and mauve.
  9. I might have a slight make-up buying problem. And I strongly believe that you should do your make-up the way that you want and not let anyone else’s thoughts bother you! Wear the bold lip color! (At least that’s what I do.)
  10. My favorite scripture is Romans 1:16: “For I am not ashamed of the gospel of Christ: for it is the power of God unto salvation to every one that believeth; to the Jew first, and also to the Greek.”
  11. I’d rather write five English essays than do one science lab.
  12. Ronald Reagan is one of my heroes, and is absolutely one of the reasons I have come to love politics and conservatism so much.
  13. I am so grateful that I have such a close relationship with both of my parents, especially my mom (#besties).
  14. I was pretty much born in the wrong era. I love old music (Frank Sinatra is my favorite) and movies. Audrey Hepburn is flawless and I will never not love Sabrina.
  15. I love true crime shows, especially Dateline. Not to brag, but one of their correspondents, Josh Mankiewicz, has replied to my tweets multiple times. And I would like for one of their other correspondents, Keith Morrison, to follow me around and narrate my life.
  16. I was diagnosed with my first chronic illness when I was three years old.
  17. My all-time favorite albums are Rivers in the Wasteland by Needtobreathe, Where I Find You by Kari Jobe, and Red by Taylor Swift.
  18. I love going to concerts. Some of my favorites that I’ve been to are Needtobreathe, Luke Bryan, and Ben Rector. My concert bucketlist includes Rachel Platten, Carrie Underwood, Keith Urban, and U2 (you gotta aim high).
  19. The first job that I was seriously interested in was being a defense attorney. I think it’s because I used to watch way too many Matlock episodes. I also thought that this would be a very dangerous job, because of those same Matlock episodes.
  20. Although I love politics, I truly believe that art can change more than legislation ever could. We look to music, film, and books for inspiration, not Washington.
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.”