To My Professor Who Encouraged Me to Take Care of My Health

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I am, admittedly, a person who overworks myself, simply because I want to explore many different things all at once and experience as much of life as possible. I was an honors roll university student, leader, mental health advocate, author, and blogger. My life was rich and full, I was happy, and on my way to receiving a double degree in nursing and social work with the dream of opening a shelter in the future.

That was until, in my second year of university, as I soaked up the beauty of life’s wonders, my body also soaked up a large handful of chronic illnesses.

At the time, I ignored the symptoms to keep pursing school. While my seizures, syncope episodes, irregular heartbeat, critically low blood pressure, abnormal blood glucose levels, fatigue, chest pain, severe iron deficiency requiring infusions, and easily breaking bones refused to relent, I refused to acknowledge that I had a problem.

“It’s just the flu,” I’d say. Or, “It’s just a bad virus, it will pass.” I was a train wreck awaiting combustion, and all I wanted was to keep getting A+ plusses and checkmarks on my degree requirements list.

Then one day, I had a seizure in my class. Humiliated that 300 students watched me violently convulse and scream, I apologized profusely to my professor who had to cancel the lecture.

He replied, “The only thing you need to apologize for is if you don’t take care of yourself.”

I stood there stunned for a moment.

I realized that I couldn’t “be the sick caring for the sick.”

If my dream was truly to take care of others, how much more important was it to take care of myself first? Ultimately, I made the decision to take a break from school. I knew that if I kept going down my current path and pushing myself far beyond reasonable limits, I would only continue to suffer. I’d rather graduate a year later and be healthy, than graduate on time and be sick and miserable.

Although I had to say goodbye to many amazing professors, aides, and peers, those goodbyes means many more bright hellos in the future.

I am about two months into my break from school, and already there has been a massive upswing in my health. Because I took the time to see a myriad of specialists and undergo testing, I have greater diagnostic clarity now. During school, I had no idea what was going on with my body and didn’t want to pause my life to figure it out.

Last week, I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS) and autonomic neuropathy, both of which essentially explain every symptom I’ve experienced this year. When I allowed neurology, cardiology, and internal medicine doctors to come into my life and take care of me, I found answers. With a very modified, strict diet, compression socks, as well as medication, my symptoms have subsided to an extent, and it’s only been a week! I can only imagine the improvement I will see over the next year as I dedicate it to my health and wellness.

Sometimes, the greatest lessons don’t come from a textbook.

So, to the professor who encouraged me to take a break from the books and take a look at my health, thank you.  I am rejuvenated, properly medicated, and on the road to even greater success now.

Oh, and I look forward to Acing your exam.

Next year.

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What It Means to Be 'Strong' as Someone With POTS

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Today I would like to dissect what it means to be “strong.” This has been a word used to describe me by so many people since I graduated college, got POTS and went through a number of difficult trials, but it still feels kind of funny when I hear someone throw this adjective next to my name.

Dictionary.com defines strong as “mentally powerful or vigorous,” but it doesn’t offer any tips on how to be strong or what kind of trials make you strong.

I was made strong. I didn’t choose to be strong and I am in no way admirably resilient. Before getting sick I was used to a fairly comfortable life, and never in a million years thought of myself as tough or as someone who would face trials well.

Almost four years later though, here I am. I had a choice to make when I got sick. I could take what the doctors said, admit defeat and recognize that my life would never be the same, or I could fight for the best life I could possibly have. I quickly chose the latter. This involves keeping an open and optimistic mindset, being incredibly diligent with my doctor appointments, physical therapy and diet, and finally — learning how to rest.

When I first got my diagnoses I asked through tears whether I’d ever get better. The nurse laughed and told me I wouldn’t and my mind immediately went into a dark abyss, thinking about a long life of dizzy spells, fainting and feeling miserable. I was incredibly lucky to have my encouraging mother with me, who followed me to the parking lot and said the nurse didn’t know what she was talking about. She said I needed to take each day as it came to me, and think positive thoughts. To this day I believe this is one reason I am slowly getting better and have been able to make peace with my new life.

I’ve had POTS for three and a half years now and haven’t had a week off from going to visit some sort of doctor. I typically have two physical therapy appointments and either acupuncture or a massage to work on managing my chronic pain, as well as regular visits to my cardiologist, neurologist and endocrinologist. I go to the gym five days a week — even when I am feeling awful — because one of the worst possible things for a POTSie to do is get de-conditioned. My gym routine involves a short 30-minute recumbent bike ride, as I could easily faint if I am in an upright position. I get B12 shots every other week since I am deficient in it and B12 seems to be a link to chronic pain. Then I have to take a lot of time to rest so that my body can settle down a bit. I get worn out incredibly easy, and a trip to the grocery store turns into a long ordeal because of the recovery time afterward.

Lots of POTS patients develop adult allergies, so I can’t eat many of my favorite foods anymore. I have given up nightshade vegetables (potatoes are my favorite food and I miss French fries dearly!), gluten and I really limit my dairy and sugar intake. I don’t drink coffee at all, partly because I can’t have caffeine and partly because I just can’t have coffee, period, and I don’t drink alcohol at all anymore. The coffee is definitely a million times more difficult.

woman typing on computer at coffee shop

Lastly, I have had to learn to listen to my body and rest. This is such a hard thing for me to do, as my mind is incredibly active. Anyone who knew me before I got sick knows I love to work and play, so sleeping and rest were never really a big part of my vocabulary. I joke to my friends that I’m just catching up on all the time I missed in my life before, but it really is a difficult thing for me to wrap my mind around. I always have a million and one things I want to do and write about; however, my body isn’t very kind to me. Writing hurts after 10 minutes, and the dictation software I have used is grueling. I can’t sit at a desk chair very long without having a lot of pain in my shoulders, and some days I can’t stand without feeling dizzy. Sometimes all I can do is rest, and I’ve learned that it’s OK to spend time listening to podcasts and watching HGTV when I really can’t do anything else. Yes, I would much rather be working and making a living for myself. I wish I could live in New York and write for a magazine, I wish I could have a paycheck to save for a new car or fun wardrobe, but that’s just not in the cards for me right now. Right now it’s my job to focus on getting better, keep taking care of myself, and trust that God will make something beautiful out of my struggle. 

The best advice I could possibly give anyone going through something tough is to take each day as it comes to you. Worrying about things in the future that you cannot control won’t help you change them, and looking back on the past won’t make your present any more satisfying. I know what it’s like to feel helpless and I know what it’s like to feel like life isn’t fair. I have found that the greatest feeling when my world is crumbling in on me is learning to give my problems to God and let Him take care of the things that are outside my control.

If I can be strong, you can too. I’ve always thought I am an incredibly average person in most regards, which should offer an incredible amount of encouragement to anyone reading this. If I can do it, so can you.

This post originally appeared on Single in the Suburbs.

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Thinkstock photo via kieferpix.

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14 Small Gestures I Appreciate as a Person With Chronic Illness

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It’s got to be incredibly difficult to watch someone you love struggle with something as consuming as chronic illness. I’ve spent a lot of time in the past getting upset (and, at times, downright angry) when people make insensitive comments that I think they honestly believe are helpful – things like “but you don’t look sick,” “you’re too young to have that,” “it could be worse,” “you just need to be more positive” and the list could go on and on. But I recently realized that the problem isn’t so much that people don’t care or that they deliberately want to hurt me; it’s more likely that they really just have no idea how to be helpful! Chronic illness doesn’t come with a handbook. It’s confusing enough at times for me and I’m the one who experiences it directly, so it’s no wonder why others truly just don’t have a clue what to do. So I’ve decided to make a list of some simple things that I’ve come to appreciate most that may hopefully help loved ones better understand how to meet the needs of someone with a chronic illness.

1. Be there.

It’s as simple as it sounds. Sometimes I feel overly needy when I ask for anything because I need help so often that I worry I’m a burden. It’s extremely helpful to be reminded (and reminded often!) that you’re there for me anytime and that I don’t burden you. I know it’s got to be difficult to deal with the constant fluctuation in my health, but I need someone who can prove to me that they mean it when they say they’ll always be there; I need that consistency in my life!

2. Ask how I’m really doing and be prepared for the answer.

Many of us with chronic illnesses are brilliant actors and actresses. We often assume that people don’t really want to hear how we’re doing when they ask – it’s just a social nicety. That’s not to say they don’t care, it’s just that people don’t usually have the time, it makes them uncomfortable or they just want to hear that you got better. Ask how we’re doing and we might immediately say “OK” or “I’m getting by,” when in reality we could be screaming in our heads, “I’m miserable!” or thinking about how we spent last night in the emergency room but are back at work smiling today. So be persistent and make it clear that you want the truth. I always appreciate this, as small a gesture as it may be.

3. Listen.

Oftentimes acquaintances (and sometimes people close to us) think they know what’s going on in our bodies better than we do. I think they typically mean well, but the way people go about trying to help is often problematic. If you ask and want to know how we’re really doing and what’s really going on, we’ll tell you exactly what you need to know. The problem occurs when people assume they know what’s best and don’t actually listen to what we tell them, and frequently compare us to others and miss out on learning about our individual situations. No two people with a chronic illness are the same. Even if two people have the same disease, they have a different genetic make-up, they have a different psychological make-up, they’ve had a different childhood and they have completely different bodies with different reactions to the disease! My point is this: people often try to compare chronically ill people in the hopes that what helped one person may help the other, but to us it comes across as if you aren’t listening to our individual circumstances. You don’t even have to worry about trying to fix any problems we may discuss (see #4). Just having someone to listen is huge!

4. Don’t worry about fixing things.

I think loved ones often feel helpless when watching someone they love struggle, and they want to fix the problem causing the struggling (duh, right?). Unfortunately, with chronic illness there is no quick fix. Given that we don’t even know how to fix it ourselves, we would never expect you to fix it! Trust that your loved one is constantly trying new things and doing all they can to get better. I guarantee that is the case. So don’t worry about searching for “the cure.” The thought and effort is greatly appreciated, but in the end, I think it’s actually more helpful just to put more time and effort into the kinds of suggestions I’ve listed here than it is to keep searching for ways to fix an unfixable problem.

5. Ask questions.

I really appreciate it when people close to me ask questions about my illnesses. It shows that you respect me enough to listen and not assume that you know everything about what’s going on. It also shows that you care enough to want to learn more.

6. Believe me.

Please, please, please don’t doubt what I share with you! It is so difficult to be vulnerable and share such personal details of your life with someone and it’s soul-crushing to not be believed. Trust me, I know this from experience, be it with doctors, family, friends, significant others and so on. Many of us are probably hiding half our symptoms half of the time, often for the very reason that we’re afraid of being doubted, so if we choose to divulge something, know it’s really affecting us.

7. Try not to assume things about my mental state or pain level, even on days I’m out and about.

There are some (OK, lots of) days where I force myself out of bed and out of the house when I’m in pain, depressed and/or anxious. That’s quite simply because I am in pain every day and depressed and/or anxious more often than not, so if I didn’t force myself I would do absolutely nothing. So while I appreciate the thought behind saying I look like I’m feeling better, know that it’s all a carefully crafted illusion created by lipstick and lots and lots of caffeine! This is important because I think the thing that creates the most doubt in people’s minds about my illness is my appearance and my ability to do some things. I can do things, but know that I pay for everything I do later in added pain and symptoms. My symptoms can also vary not only day to day but hour to hour, which makes planning difficult and can be confusing when I can’t do what I just did this morning by the afternoon. I try to have as normal a life as I can because, well, who wants to be sick all the time? But that seems to be really confusing to people (which is completely understandable because it’s difficult for me and it’s my life!). So just try to remember that while I’m trying my hardest to have fun and appear normal, I still have my limitations and may still need some help – even on “good days” when I appear fine.

8. Express how you’re truly feeling.

It’s actually comforting to me when people have told me that they’re scared or worried about me, which may sound strange, but it makes me feel a lot less alone. If you’re scared or uncomfortable or don’t know what to say, please don’t be afraid to tell me so! One of the things I’ve been forced to learn from being sick is to be more vulnerable, and that being vulnerable, while still scary, isn’t a bad thing. I feel that actually saying exactly what I’m feeling – even when it’s something considered negative like fear or discomfort – makes my relationships a lot more honest and meaningful. Please share your feelings with me! I know that my illness affects you more than you show me (which I think is often because you’re trying to stay strong for me), but there’s nothing weak about expressing your feelings, and it actually helps me feel validated knowing you’re feeling similar things.

9. Try to be patient with me.

Getting frustrated with me is understandable at times, but please remember that I’m even more frustrated with myself. Try to be patient when I need extra help or can’t go out again. Think about how I must feel: like a burden, like a let-down, like a bad friend, significant other or family member…so it makes it a lot easier to deal with the guilt that comes as an inherent part of chronic illness when the people around me are as patient as possible.

10. Continue inviting me to things even when I often can’t attend.

Like I said above, please trust me when I say that I absolutely hate having to miss out on things, and I feel extremely guilty and frustrated when I can’t go or have to cancel plans. I love it so much when people don’t forget about me and continue inviting me even though they know I likely won’t be able to go. I still desire to feel included and remembered.

11. Encourage me.

It is incredibly difficult to have hopes and dreams as someone who is chronically ill. Chronic pain truly alters your brain both chemically and structurally; it literally rewrites your brain to make you more depressed and anxious. Which, when you think about how pain makes you feel mentally, this shouldn’t come as much of a surprise. But being constantly in pain wears you down so much that it makes you feel as though you’ll never escape and that there’s no point in trying to accomplish anything. It makes you feel that you’re a failure before you even begin. It’s also extremely discouraging to spend years hoping different doctors will help you, hoping different medications will help you, hoping different therapies will help you…only to have your hopes crushed almost every single time. You kind of learn not to get your hopes up anymore, as sad as that is. These things make it very hard to continue looking forward to the future and to follow your hopes and dreams. It even makes it hard to make new hopes and dreams, which are essential parts of creating motivation to stay alive! What I’m getting at is that many of us crave encouragement. Whether it’s something as simple as encouraging us to keep going to doctors, to keep up with our hobbies as best we can or just to make sure we keep getting out of bed each day and take care of ourselves, that feeling of being cared about and believed in is huge.

12. Acknowledge my victories (both big and small).

Another thing I absolutely love is when people tell me they’re proud of me. I know I sound like a 5-year-old, right? But for many of us, getting out of bed truly is a much bigger accomplishment than you’ll ever know, and it’s hard to know that nobody understands what it takes just to do the most basic things that make up a life. To understand what life is like for people with some chronic illnesses, here are a few comparisons that may help put things in perspective: People with postural orthostatic tachycardia syndrome (POTS) have symptoms such as chest pain, trouble breathing, fluctuation in blood pressure, tachycardia and heart palpitations. Many people with costochondritis (inflammation of the cartilage of the ribs, occurring as a symptom of many chronic illnesses) fear they may be having a heart attack before it’s diagnosed because the pain is so severe. Doctors have said that the average, healthy person would have to stay up for three days straight and then try to function to understand the level of fatigue typical of someone with fibromyalgia.

And folks, one of my favorite chronic illness jokes is that chronic illnesses are like Pokemon – you gotta catch ‘em all! Most people have many comorbid chronic conditions, so imagine living with all of the above problems and trying to function. I don’t want pity, I just want awareness and acknowledgment. Really, all it takes is something as simple as saying, “I’m proud of you for making it through another day. I know it was hard for you.” What I see as accomplishments may seem silly to you, but to me it feels like I conquered Mount Everest by getting out of bed! I’m painfully aware that I don’t have as many big life achievements to celebrate, so I’ve had to shift my perspective a bit and I’d love it if you’d take part in celebrating my tiny victories with me!

13. Take care of yourself.

I think this is something a lot of caretakers and loved ones forget or don’t think about (I’m especially thinking of my parents who are incredibly selfless). As the saying goes, you can’t pour from an empty cup. You can’t help me if you aren’t taking care of yourself properly. Taking care of yourself is a necessity and is not selfish in any way.

14. Remember that a relationship is a two-way street.

This is a good time to point out that my relationship with you is still a relationship regardless of me being sick, which means I’m here to help you, too! It feels great to help out others. When you need some time to take care of yourself, let me help in any way I can! When you are going through something tough, don’t downplay it or feel bad complaining because you think that my situation is somehow worse. Everyone’s pain is equally valid and difficult. When you have something to celebrate, I want to express how proud I am of you! Our lives may differ vastly, but a relationship is about supporting each other. Chronic illness changes a relationship, but that doesn’t mean I don’t still want to take care of you in whatever ways I can.

family of five posing at disneyland in front of the castle

These may seem like small, simple suggestions, but it’s these little gestures that have meant the most to me. It can be difficult to maintain a relationship with someone who has a chronic illness, but I think the struggles that are faced make these relationships stronger and more essential. It’s by no means easy, but I hope that the unique challenges brought on by chronic illness may help you come to appreciate your loved ones and your life even more, as they have for me.

This post originally appeared on What It’s Really Like to Be Sick.

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When My POTS Anxiety Prevents Me From Responding to Messages

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My phone buzzes once. Twice. Three times. My heart beats quickly as I wait for the buzzing to stop. I look down- four missed calls, two voicemails, five emails, and seven Facebook notifications. A wave of anxiety rolls over me looking at all the things I have missed, and I feel overwhelmed. What if the missed call was a doctor with bad news? What if my Facebook messages are friends who need advice I can’t give? What if I forgot something I was supposed to do? I haven’t checked my messages in days, what if I missed something, what if someone is upset I didn’t answer their call? What if, what if, what if. The stress takes over, and even though I know none of those things are likely, I put my phone away.

Over 40 million American adults are affected by anxiety, and it can be caused by a multitude of things. People see counselors, practice meditation, take antidepressants or anxiety medication or do whatever they can to help manage the symptoms. I struggle with the general anxiety and depression that often comes along with being chronically ill, but I also have another type of anxiety.

I have a condition called Ehlers-Danlos syndrome, which can come with many different comorbid conditions. One of those conditions is called dysautonomia. I have a type of dysautonomia called hyperadrenergic postural orthostatic tachycardia syndrome (or hyper-POTS). This syndrome causes many symptoms: nausea, dizziness, fainting, fatigue, migraines, brain fog, palpitations…and severe anxiety. Many people with POTS are in fact misdiagnosed with anxiety disorders first, as the symptoms are so similar.

Hyper-POTS can cause something called adrenal fatigue. This condition can cause your body to not produce enough of certain hormones, which we rely on to physically handle stress. These hormones also control your fight-flight-or-freeze response, so when it is out of balance, it makes you feel on edge all the time.

It is so hard to manage the symptoms of anxiety when you have these conditions, as traditional medications often don’t help, and talk therapy does little when the problem is a physical response in your body. When you couple the POTS anxiety with the problems faced by many with chronic illnesses – isolation, depression, anger, frustration, disappointment, physical pain, coping with the “sick” feeling all the time, managing doctors, medications, treatments, the constant uncertainty of how each day will go and trying to participate in “real life” – it can all be overwhelming. Overwhelming to the point you are frozen. I feel so frustrated with myself when I am overcome with anxiety, and guilty when I ignore and shut out the ones I love. And each day I ignore the things that are causing anxiety, they build up and the anxiety worsens. Sometimes it can take a week or more to come out of an episode. To start to function. To feel OK again. To breathe.

So, I am sorry I didn’t answer my phone. It isn’t because I don’t love you or don’t care. It isn’t because I am mad or upset. I’m sorry I ignored your Facebook message – it does matter. It doesn’t mean you aren’t important to me. I hope you can understand that every day I am doing the best I can. It’s just that some days, pushing through is easier than others, and I am learning new ways of coping all the time.

So on my bad days, please love me and be patient. I just need some time and space. Know that good days are coming, and know I love you.

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Why I Like Seeing Doctors Who Are Unfamiliar With POTS

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I know this sounds strange, because so often it is frustrating when medical professionals are unfamiliar with a condition. I recently saw a doctor who had never heard of POTS (postural orthostatic tachycardia syndrome).  Whenever this happens I start by explaining my condition simply as “my autonomic nervous system is faulty.” I then add in the symptoms I have and how they can become more dangerous or severe. I then usually talk about what medications I am currently using. Once the facts are out there I will usually take one symptom first and ask if that doctor has any ideas to treat that specific symptom.

Here is where the magic happens. Doctors who are unfamiliar don’t automatically revert to “well, these three medications are the basics and that’s all there is so learn to deal with it.” For instance, I asked my newest doctor about my extreme fatigue. His first suggestion was, of course, something that elevates heart rate, so I had to remind him we needed to avoid that. He then had ideas of some different medications, as well as natural herbs and supplements that can help. He suggested Ashwagandha root, which is an adaptogenic herb, meaning it will work more over time.  The dose he put me on was three times the dose recommended on the bottle, and honestly it did raise my stamina for standing and activities by at least 10-15 minutes. Any additional elevated time is golden for someone on full disability.

This doctor was also interested in genetic testing to check and see how quickly I metabolize medications, which proved to be very informative and useful. None of my other specialists had ever suggested that type of testing.

I explained that it was unknown what caused POTS to activate in my body, and that it could be any number of things. He decided to order a 24-hour urine test to rule out heavy metal poisoning as well. The results of this test did nothing other than rule out heavy metal poisoning, but isn’t that still useful? If the test had shown anything we may have been able to make some big changes in my health.

I like seeing doctors who are unfamiliar with my condition because they often use their knowledge of symptom treatments and occasionally suggest something that another doctor might not think of since they already know the protocol thus far for treatment.

However, I always have to remember to check my medications through a drug interaction checker online before trying anything new, especially since the new doctor may not be looking at my current medication list when prescribing another medication.

It shouldn’t be scary to see a doctor who is not familiar with your condition. If a medical professional has a heart to help, they may suggest something useful or helpful that another doctor missed. I believe that it’s worth a try. There’s always the chance I might gain some pain relief, get help with sleep or even find something that can treat the condition itself.

Follow this journey on POTS: Finding Smiles in the Trials.

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Thinkstock photo via utah778.

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What Hiking the Grand Canyon Taught Me About Living With Illness

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Mountains to Climb

A Facebook memory popped up this week with a picture of me smiling and hiking down a mountain with a pack on my back. This was me seven years ago, embarking on a four-day hike down the Grand Canyon. My first thought as I looked at the picture, as with many of my previous memories, was envy of my former self – a longing for days gone by when I could wear a pack and hike a mountain. These days, with my autoimmune issues and POTS (postural orthostatic tachycardia syndrome), just climbing a set of stairs about does me in. (Stairs are my nemesis!)

woman backpacking in grand canyon

However, there’s much more to this picture than meets the eye. I had no idea of the grueling ordeal that was soon to come in the days after this picture was taken.

I have always had a love for history – there’s a lot of lessons to be learned and parallels that can be made by examining the past, and this particular story is no exception. This Grand Canyon trip ranks among the toughest physical challenges I’ve had. Although I could summarize in much less detail, I think it’s a story worth re-telling to the full effect, so here it goes.

Hiking the Grand Canyon

To set the stage, let me just say that I have never been super outdoorsy. Yes, I loved to ride my bike on the groomed trails around the lake, or go for day hikes in the mountains, but camping (and going multiple days in the dirt without showering) has never had much appeal to me. So agreeing to go on a four-day backpacking trip through the Grand Canyon was kind of a stretch out of my comfort zone. Also, I had just had a third laparoscopic surgery a couple months earlier (trying to cauterize my painful endometriosis, once again). So going into this trip, I hadn’t been able train as much as I would’ve liked post-surgery and probably wasn’t as prepared as I should have been.

man and woman backpacking in grand canyon

Things started out fine, but a few miles into our descent I stepped on a baseball-sized rock that rolled underneath me. My ankle went one way and my knee went the other. Surprisingly, my ankle was fine, but my knee was tweaked a bit. I rested for a few minutes to “shake it off” before continuing on. In all honesty, it seemed pretty minor, and had I not hiked another five miles at a very steep decline with a 40-pound pack on my back, I probably would’ve been fine. But by the time I reached the bottom I was cringing with each step. (A trip to the doctor after arriving home confirmed a pretty bad knee ligament sprain.)

Day two at the bottom of the Grand Canyon was beautiful. Although it had been cold and snowy at the top of the canyon, it was 65 degrees and blue skies at the bottom. Our party took a day hike out to a waterfall, but I opted to stay close to camp and let my knee rest. With the beautiful weather, I enjoyed the day and thought, “I can totally do this camping thing.”

woman standing at the bottom of the grand canyon

My dad returned from the waterfall hike not feeling well and shortly after started vomiting – whether from a stomach flu or severe dehydration we weren’t sure, but he continued to get sicker, weaker and more dehydrated throughout evening. I was worried. He’d had a heart attack several years earlier; I was terrified that all the exertion and the sickness would bring on similar problems. He was still sick when night fell and had to stay close to the bathrooms (amazingly, and thankfully, there are flush toilets at the bottom of the Grand Canyon), but they were not very near to our camp. I was worried about letting him stay there by himself. What if he had a heart attack and no one was around? Not that my limited CPR skills would be much good if needed, but, nonetheless, I sat on the cold ground outside the bathroom with my dad for the better part of the night.

By day three our beautiful weather had disappeared, and a cold wet drizzle descended upon us. Although we were supposed to be starting our hike out that day, our group decided it was best to wait one more day and let dad rest and recover. We sought out some park rangers and asked if there were any other options to get dad out of the Canyon – mule, helicopter, etc. We were told that unless he actually did have a heart attack, in which case the cost to be air-lifted out would be an astronomical amount that we’d be paying off the rest of our lives, the only way out was to hike.

woman smiling in a tent at the bottom of the grand canyon

I was dead tired after my night of no sleep. I went back to my tent to take a nap. When I woke up, I was completely soaked! The tent had leaked. Not only were my sleeping bag and pack wet, but my shoes had filled with water too.  I burst into tears!  I was so tired and cold.  My knee still throbbed, and now everything I owned was soaked through and there was little chance of being warm or dry for at least few more days.

That evening the park rangers sought us out to tell us that a huge storm was heading in and they wanted everyone out of the camp as soon as possible. Due to the steepness of the trail, we had planned to take a longer, somewhat less steep, trail out of the canyon and to split that hike up into two days. However, with the storm, we decided that it’d be best to make the two-day trip all in one day, leaving the following morning.

The rain continued to worsen throughout the night. We had to double up like sardines in the remaining “less wet” tents and, needless to say, it was another long, sleepless night.

Morning finally came and we packed up our muddy tents in the rain, put on our sopping gear, and started our trudge up the mountain. The trails had turned into little streams, with the water carving them down into a V-shape with steep sides. We had to hike with our feet awkwardly sloshing and slipping at odd angles through the mud on either side of the V-shaped trail.  You can imagine how great that was on my sprained knee. At times we had to wade through calf-deep streams that had completely washed over the trail.  Sometimes my foot would sink so far into the mud, I had to physically use my hands to help pull my leg up out of the mud.  More than once, my foot emerged, but my boot stayed firmly rooted in the sludge. (I won’t even go into detail about the blisters and lost toe nails from that day…)

woman backpacking on a trail in the grand canyon

About halfway up, we stopped to eat soggy granola bars for lunch. After resting for those 15 minutes, I tried to walk again, but my injured knee had locked up. It refused to go any further and every step on the muddy trail was torture. I burst into tears once again. How the (insert expletives) was I going to get up this mountain? I was so tired, so wet and muddy and cold, and my knee hurt so bad!

After letting myself cry for a few minutes with my husband standing by trying to be reassure me, but with little he could actually do to help (he’d already taken much of the weight from my pack for me), I finally had to pull it together and remind myself that there was no way out except to hike (trudge, trod, slog). So I finally took a deep breath, told myself, “I can do this,” turned on my iPod, and started back up the trail.

Not much further up the rains turned to heavy snow and ice – a blizzard. As everything we owned and wore was already soaking wet, we pretty much turned to ice as well. The mud mixed with slush and patches of slick ice. As we hit the last few miles with endless steep, icy switchbacks, I tried to keep my eyes on the prize. “I just have to make it to that next bend, then I can take a little break.” And at the next bend, I’d look to the next bend and repeat the same thing. Most of the time when I looked up, I couldn’t see the top – just more endless rows of switchbacks. How much further did this mountain go?! Would it ever end?

At one point my iPod shuffled to the Matchbox 20 song, “Let’s See How Far We’ve Come.” I stood at a bend in a switchback. While I couldn’t see how far I had left to go, I looked down the mountain and could see how far I’d come – miles of trail unwound below me. Wow! Had we really come all that way? I took courage and strength in that sight while my own personal soundtrack was playing. Instead of focusing on what we had left, I kept repeating over and over again, “See how far we’ve come!”

trail of switchbacks on mountainside in the grand canyon

As we hiked I thought a lot about the pioneers. I suddenly had a much greater empathy for them. This was just a four-day trek. I couldn’t imagine the feats they had been through over weeks/months. Additionally, I knew that I had a restaurant and a hotel room waiting for me at the top of the mountain with a juicy burger and a warm shower. The pioneers had arrived to an empty valley where they still had to build their own homes and grow their food. If they could do that, I could certainly do this!

As long as this blog post is now becoming, it is not nearly as long as that 10-hour hike up the canyon. But, as I’m sure you’ve guessed, I did eventually make it out alive (and, in case you are wondering, so did my dad, who later confessed to me that he was, indeed, having chest pain for most of the trip. Thank heavens nothing major happened!).

Lessons Learned

For the sake of brevity (oops, sorry, too late for that!), I’ll just point out a few of the lessons I’ve been reflecting on as I’ve revisited my Grand Canyon memories.

1. Rose-Colored Glasses

So back to the present day, as I mentioned, when my Grand Canyon Facebook photo popped up, my initial thoughts were of envy with the reminder that I once had the ability to hike, walk, climb, run, etc. – something I can no longer do (at least not without constant fear of passing out). Yet in reality, that was a harrowing experience and not a challenge I would ever like to face again.

woman backpacking in the grand canyon

Sometimes when looking at the past, I find myself looking through rose-colored glasses. Because I’m still grieving for all the things I can’t do now, I often only see the “grass is greener” things from my past. I forget about the struggles I dealt with then. At the time of this hike I had actually been dealing with a lot of other trials. I have already mentioned my multiple surgeries for the debilitating endometriosis I dealt with. I had also been struggling from years of infertility and failed treatments, and some intermittent depression as a result as well.

My life in the past wasn’t as perfect as I sometimes remember. Yes, I had more physical abilities than I do now, but I also have some things now that I didn’t have then (perspective, stronger faith, deeper friendships, greater awareness of others, time to write really long blog posts…). I can learn from the past, but it doesn’t do me any good to dwell on the things I can’t bring back or change. I have to keep moving forward.

2. If They Can Do It…

As I thought a lot about the early pioneers on my hike, I similarly gain strength today by knowing that “others have done it.” Maybe they don’t have the same problems I have, but since my illness, I have become so much more aware of the trials that those around me have. I am in awe of the strength I see in my friends that are battling cancer, other health problems, financial struggles, or loss of loved ones. Their fortitude and courage in the problems they face help me in mine…if they can do that, then surely I can do this

3. I am Stronger Than I Think I Am

From that hike, I found strength in myself that I didn’t know was there. It was one of the hardest things I had done, and I survived. It was a testament that I really could do hard things. Additionally, in remembering the dozens of silent prayers I sent up with each step of my journey, I would be foolish to not recognize that it wasn’t just my own strength I was relying on, but the strength of my Lord to help me through that ordeal as well.

Doing hard things is not just about physical strength, but mental and spiritual stamina as well. One of my favorite talks of the same title, “Mountains to Climb,” by Henry B. Eyring, reminds me that “if we have faith in Jesus Christ, the hardest as well as the easiest times in life can be a blessing. In all conditions, we can choose the right with the guidance of the Spirit. We have the gospel of Jesus Christ to shape and guide our lives if we choose it… We can live with perfect hope and a feeling of peace… The Savior has promised angels on our left and on our right to bear us up. And He always keeps His word.”

I have felt those angels, both heavenly and earthly.

trail of stairs in grand canyon

4. Let’s See How Far We’ve Come

Today I still climb mountains – my mountains are just different. My mountains are making it through a painful and lousy day/week/month while trying to hold on to a positive outlook and not lose hope or faith. There are days when I break down and cry, “How the (many expletives) am I going to make it through this?” But just like on the trail of the Grand Canyon, I realize I don’t have many options. I can sit down and wallow in the mud, or I can keep trudging, keep trying, keep seeking out something that is going to help as I continue to work on my faith and endurance.

And some days, I can only look as far as the next bend and tell myself “I just have to make it through today!”

Although I can’t see the top of the mountain or the end of this journey, I can look back at the path I’ve come and gain strength and hope from seeing the trail I’ve traveled. It’s been a rocky road, but I’ve come a long way. Although there have been a lot of ups and downs, I have seen improvement since my first diagnosis (when I couldn’t even walk from my bed to the bathroom without collapsing, and I certainly wouldn’t have had the cognitive ability to write this ever-increasing lengthy post). I have also made progress on the road to acceptance and emotional healing. Although there may not be a true summit and complete physical healing for my condition in this lifetime, I can keep climbing, have faith and try to take heart in the plateaus and vistas along the way.

This post originally appeared on Mommy Can’t Dance.

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