God Is Here, But Isn’t Telling Me Something

I’m in so much freaking pain right now I don’t know if I want to throw up or cry. Preferably both would probably make me feel better. I don’t feel like this nearly as often as I used to, as my health is improving, but it still feels like it’s going to last forever. I can’t focus on anything else and just want the day to be over so I can have a clean start with refreshed muscles.

I always try to figure out why I’m in more pain than usual so it won’t happen again. Often, there isn’t a big cause — it’s just maybe the weather (I SWEAR I get bad headaches more often on rainy days) or the fact that I was standing too long in a day my POTS was acting up. There are other times, though, that I know I’ll feel bad the next day. Taking an airplane or sitting down for long periods of time, being much more active than usual, or staying out late are all things that can cause pain. Writing causes pain for me. I wrote a lot today. I didn’t focus on my ergonomics the way I should have. That might be a big reason I’m at an 8 and want to cry now.*

Some people might take this as a sign from God that writing may not be their thing. After all, my hands become stiff and my pain creeps up my arms and shoulders the longer I’m writing at a computer, so the writing does quite literally hurt me. It isn’t comfortable the way it used to be, and you’d think if it was my calling I wouldn’t have to take breaks to pace myself so much. Writers can sit down at a computer and churn out words for hours on end without taking so much as a bathroom break. This thought has crept into my mind before. Why can’t I do what I love and what my heart desires most as a full-time job? Why did my trajectory change so drastically? Is it because it isn’t my destiny to be a writer and I should look for something else to dig in deeply?

I am reading a book right now that talks a little about “signs” and Christianity. It talks about how sometimes things that happen are not as monumental as we want them to be — they’re just little blips in the grand scheme of things. Not everything in the world is a sign from God, even though He is always here with us. My pain that is linked to writing is not a sign from God that I need to stop. I know I am supposed to be here in this little space of the Internet, and it isn’t some big selfish desire my heart has. It’s just a deep-rooted yearning I have to connect with others, share my stories, and help each of us feel less alone in the world. The chronic pain I’ve dealt with might just be yet another way to connect with people, but it isn’t a sign that I need to stop writing. Sometimes people wait too much to try to listen to what God wants them to do, rather than just strapping on their boots and trying. I think we sometimes underestimate God and don’t realize that if we’re going in the totally wrong direction, He can find ways to pull us back on track. The most important thing is to get up, and go for what we think can change the world. If we’re wrong — which people often are — we can keep trying until we get things right. After all, that’s an enormous part of what it is to be human, right? Learning from our experiences and making ourselves better from them.

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Hopefully tomorrow I’ll be feeling all better. Like I said, I was a little alarmed to feel this bad because I’ve had so many good days lately. I am grateful for that, and I hope to continue getting better and better.


*Those of you in the chronic illness community know we often rate our pain on a scale from 1-10, 1 being pain-free, to 10 being unbearable. It gives doctors a better way of seeing improvement and knowing how bad — or not — it really is.

Strange Things I Miss

Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*

Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.

Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.

1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.

2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.

3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.

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4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.

5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.

I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.


*For any POTSies who are curious, I am doing the Levine protocol.

Insurance Is A Freaking Pain

My pain has been really bad lately. I can tell I’m really not feeling well when my nails look like crap — I love having painted fingers and toes, and always do them myself — and I begin forgetting things. Yesterday I had to turn around and drive home because I could’t remember if I shut the door — not locked it, but shut it — I fed Jax a second breakfast, and I can’t remember the third thing I forgot… It will come to me by the time I finish this.

I have decided that our next election I am going to really, really pay attention to healthcare and making it a top priority in how I vote. I’ve changed around insurance plans and being without physical therapy for the rest of the year sucks. The thing that frustrates the hell out of me is that I am in pain and trying to fix the problem by doing something that is good for me. I haven’t gone on medication to manage my POTS (Though I do think some people can absolutely not do without it and need to do anything that helps them have any semblance of a normal life), and I work hard to try to be as pain-free as possible. There are a few things that frustrate me. First, insurance doesn’t cover as much PT as I need in a year. I really have to figure it all out way in advance and go without it for periods of time to make ends meet. At some point my pain is going to go from a managed 3-5 with physical therapy to an 8-9 range without it*. Working out and getting hands-on work done is a key part of having me feel better than I do now. I never feel normal, but my pain is at least being managed. Second, PT is harder to get than medication and that makes absolutely no freaking sense to me. If there is a way to actually manage things without taking six different prescriptions I want to do it. Part of the complication of having a chronic illness is looking at your own symptoms versus what side effects medications will have on you, then picking the lesser of the two evils. You also have to weigh the pros and cons of being on something long-term. It makes absolutely no sense to me why doctors are able to prescribe something that I have to consume that will only temporarily put a bandaid over the problem, rather than trying to chip away at all the issues I have with the natural way of physical therapy. I am very dependent on going in for my visits, as I get terribly stiff and have a lot of pain when I miss more than a session, but I feel like I am making progress in a few small ways at a time. When I can’t go I start deteriorating and taking several steps backwards, even with the programs I do on my bedroom floor and at the gym down the street. I hate being dependent on anything, but having a chronic illness has really been humbling.

I feel like I have more freedom when I am feeling better because I do. I can do more when I feel better, and even at my very best I’m not at a normal 28-year-old level. When I talk to all of my grandparents on the phone, I feel like we relate more than friends my own age when it comes to how we feel. We are all in pain in one way or another, and can’t do as much as we used to be able to. I am scared of getting older and having the normal wear and tear of aging, but maybe they’ll have a cure for POTS by then. I don’t think about that often because it doesn’t do me any good to worry about the future, and I continue to focus on making myself get stronger and managing my symptoms on a day-to-day basis. I figure I’ll just worry about problems as they come to me and try my best to be healthy and prevent anything from deteriorating further.

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Finally, I am frustrated because by asking to go to physical therapy I am not asking to do something excitingly fun. Sure my PT’s are all so incredibly nice and fun people I would totally be friends with outside the clinic (Shoutout to, Melissa, Hilary, and Jackie for being the absolute best!), but it’s work and it often hurts a lot when I have to get poked at while I am in pain. The benefits are feeling astronomically better, though, while I am going on a regular basis. So, my third and final annoyance is the fact that I can’t go to get help to have a shot at having even remotely close to a normal life. My quality of life when I am in pain is not goodI constantly feel like I need to throw up from the pain, but don’t. My usual level with treatment is a consistent “I just went on a long run” kind of pain, with a few sharp and gnawing pains here and there, but what I’ve been having lately is several times worse than that and blaring a lot louder. I often find myself having a hard time focusing on what people say to me because I can’t seem to get past thinking about the coat hanger pain that consumes me. I can never drive for more than about fifteen minutes at a time without feeling some sort of pain, but now driving makes me want to cry because of how much it hurts to be behind the wheel. I’m back to having a hard time figuring out how to be productive and what I can do every day because everything hurts.

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I still don’t remember what I forgot before, but maybe once I can get taken care of my brain can start focusing on normal little tasks instead of honing in on how much it hurts to do anything. Speaking of which, I can’t sit at this computer any longer or my shoulders won’t feel okay in time for Christmas. I’m going to go spend some quality time with my foam roller and hopefully be able to get some sleep tonight!


*I think this was obvious, but for anyone who doesn’t know, pain is often measured in a scale from 1-10 in the medical world because it’s a little easier to articulate how you are feeling that way.

Slow To Anger

Back to Corinthians to begin wrapping up my favorite Bible verse. Here is where we left off,

“[Love] is not easily angered, it keeps no record of wrongs.”

Anger is an umbrella term for a bunch of other emotions we might not think about being in that category. Frustration, disappointment, and crankiness are a few feelings that can all be categorized under “anger.”

“Love is not easily angered” is a beautiful sentiment. I think as humans we feel things so deeply and often let our emotions control us, instead of the other way around. The easiest thing to do when we feel angry is to react. Anger is one of the most detectable feelings because it is often intense, and humans don’t always hold back when they are upset about something because it’s difficult to keep anger brewing inside until we can really evaluate the situation. Other feelings — such as love — has many different levels and outlets. Although people have different ways of expressing anger, it is often a feeling that is easily showcased and makes people around the angry person have strong reactions, too.

Anger is one of the most important emotions to learn to control. It is one of the few feelings that can lead to lasting damage if used incorrectly, and needs to be used in conjunction with wisdom and patience.

One of my favorite quotes is,

“Be careful with your words. Once they are said, they can only be forgiven, not forgotten.”

Google doesn’t seem to know who said this, but it’s so powerful. Sadly, people often say things they don’t mean — or intentionally try to hurt a loved one — when tensions are high and they are angry. The interesting thing about anger is that we often react because we want to see a specific outcome of a situation, however reacting before thinking about it doesn’t allow us the time to come up with the smartest plan of getting where we want to be.

Do you notice how the verse doesn’t say, “Love doesn’t anger,” rather it says, “Love is not easily angered.” I am no expert in semantics or theology, but I do think each word used in the Bible is crafted with a purpose. God knows that as humans we are going to get angry (heck, Jesus got angry when He was on earth, and things got crazy when he was mad), but He wants us to learn how to control our feelings and to remain calm and patient with others while we try to sort things out. Holding back anger for when it’s really necessary is wise because it shows an element of self-control, and it makes your anger actually mean something. Since Jesus was known as someone who was peaceful and kind, you knew He meant business when He turned the tables in the temple. If He was a hothead, He wouldn’t have been taken as seriously the few times He really showcased anger throughout the Bible. We should use our anger only when it’s really justified and when we really need to be heard, so that others can take us seriously when something does mean a lot to us.

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I’m not a huge Joel Olsteen fan, but he does have lots of nuggets of wisdom. When looking for a source of the quote above, I stumbled upon this, and had to add it to my post. Olsteen says,

“Be careful what you say. You can say something hurtful in ten seconds, but ten years later, the wounds are still there.”

This is so true. I don’t always remember every detail of my life, but something that seems to always stick is a hurtful word. Have you noticed that? This leads me to our next point. “Love keeps no record of wrongs.”

Forgiving is the easy part for me, forgetting is a whole new beast. I have gotten hundreds of kind and encouraging comments on my blog the past three years, however I remember the two negative ones the most clearly. Friends and family are typically the most uplifting people in life, but when they say something unkind out of anger, it often gets taken to heart — after all, if someone who loves you so much thinks something negative about you, it must be true, right?

Words are such an important thing to monitor. I have found that a harmful word can sometimes hurt even more than physical pain, and there’s a reason people use one of the most vital organs in the body to represent love and heartbreak. When your heart hurts, it can be so hard to fix it completely. For this exact reason, it is so important to take time to think before reacting to a situation. Something said in anger can never be taken back, even though it can be forgiven.

Today’s lesson: I never want to damage a relationship or a loved one over something said when emotions were running high. In the same way my mom always tells me I should not make a big decision when I am not feeling well, I don’t believe it’s wise to always speak with someone at the first sign of anger. It never hurts to take time to reflect, think about why you are really mad, and then have a gentle conversation about the reasons why you feel the way you do. Communication is one of the most important things in a relationship, and pure anger often does not bode well for either party. Being slow to anger and able to forgive ensures a happier life for everyone, and allows us to get our true feelings across to others, rather than spewing hurtful things that may or may not be true. In the same way we aspire to love like Jesus does, I think it’s important to try to be angry the way He is, too.

 

Love And Pain

Pain and sickness are really difficult things to write about. Trying to describe things you’re feeling but  many people have never dealt with before is essentially attempting to put pen to paper about the way butterflies feel in the beginning of a relationship to someone who still has yet to experience it. You can use the right words, but they won’t really connect until they have something to relate it to.

For example, think about the way some of your first crushes felt, versus how actually being in love feels. They both have the same warm and fuzzy feelings as a base, but feel drastically different. That’s how I would compare temporary short-term pain, such as an injury or a broken bone,  to chronic, long-lasting pain. I’ve experienced both, and before getting sick I wouldn’t have had anything to draw from to compare to the new exhaustion chronic pain brings. You don’t ever get a break from chronic pain. Even when you can kind of ignore some of your problems on your good days, the bad days are right around the corner. I do a great job of not thinking too much about that when I am well, and I’ve gotten really good at living in the present when I can. Then, the bright side is that on bad days I know a good one just has to be right around the corner. Chronic pain is a vicious cycle, though, and wears you out to your core. Not only does everything hurt, but you also are always so incredibly tired from not being able to sleep. Whether your body is annoyed from being tense and having your muscles screaming at you all day long or your brain keeps you up thinking about the pain you’re feeling, you don’t get good rest. I don’t remember the last time I got in bed and just fell right asleep. It’s been years.

I’m constantly sending articles and trying to pull up scientific findings about my conditions to people I love because I want them to understand how I feel. God, I want to be understood. I hate feeling cranky because of my pain or having days where I can’t stand it anymore and just break down and cry. Granted, the latter are few and far between, but sometimes my body just can’t take anything else and needs some sort of outlet. Talking isn’t my best one because I want to help other people feel happy and good, so I don’t like to complain — or maybe I don’t know how to complain properly; I haven’t quite figured that one out yet. I love to write, but I don’t always have the strength, and frankly I don’t want to leave behind troves of essays on how much my body hurts.

I just don’t feel like anyone I’m incredibly close to has been in a situation quite like mine, and it’s minorly heartbreaking knowing that yes, I always have a shoulder to cry on, but I don’t have anyone who really gets it and can tell me that they know how I feel. That’s why I am motivated to write about my struggles. 

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Don’t get me wrong; I don’t want anyone I love and care about to ever understand chronic pain or any other kind of difficulties in life. One thing I’ve always been thankful for is that I’m the one with this problem. I would gladly take every pain away from the people I care about if it meant they didn’t ever need to face it themselves. Not only do I feel like God gave me a strong heart and will to keep pushing forward, but I think He gave me a beautifully optimistic outlook on things, and I’m really grateful for that. I think I’m handling the hurdles I’ve been thrown the best I possibly can, and I actually think that despite being a painfully average twentysomething, I am exceptional in accepting the negative things in life as a reality and then figuring out how they can turn into a blessing — or at the very least, something that doesn’t consume me. I have always said that I may have POTS, but POTS doesn’t have me. The same goes for my chronic widespread pain; it’s a big part of my life, but there’s no way in hell that chronic pain is going to take my entire life from me. I will count my blessings until the day I die, and today those are my loved ones, dogs, chocolate, Taylor Swift, Brad Paisley, and each and every one of you. 

I’m At An 8

This month I’ve had a very rude awakening about just how much physical therapy helps me. As someone with POTS and EDS, I have lots of chronic pain, particularly in my upper body and limbs. Whenever you go to the doctor or physical therapist, they ask if you can rate your pain scale from 1-10, 10 being completely unbearable. I’ve had very wide ranges, but the more I am able to go into the office and have hands-on work done, as well as doing my monitored strength and mobility exercises, the better I typically feel.

This article about exercising and living with EDS is well written and super-relatable. My insured PT visits ran out this month and I’ve only been a little over a week without care, but my pain levels have quickly shot up to an 8. I can’t focus on anything entirely because of how much everything hurts, and I can’t do the activities I’ve worked up to because of how much it hurts my shoulders and arms. Sleep is the only thing that relieves my pain right now, and I need to get back to my therapy sessions as soon as possible so that I don’t lose the progress I’ve worked so hard to get. It’s so frustrating living in a body that depends so heavily on doctors and working out the right way, but the thing that is the most difficult isn’t the time or effort put into all of this; rather, it’s the expense and toll this unwanted illness takes on myself and my family. I’ve always tried to remain positive and focus on the good in my life without allowing myself to dwell on the fact that it’s not fair for a young twentysomething to be sick, however it’s a lot more difficult when I feel like everything in the healthcare world is working against me. I don’t want to debate politics on this blog — ever — but one thing I do want to touch on is that I very strongly believe that people with disabilities should be cared for and given as much help as necessary to have as much of a chance at normalcy as possible. “Normal” hasn’t been attainable to me yet, but I feel blessed enough to not constantly have sharp, intense pain that I am grateful for the help I do get through physical therapy.

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In the meantime, I’m going to continue to do the best I can by doing my gentle stretches, mobility exercises, and managing the pain the best I can until January comes when I can get back in a normal routine. I have a pretty big doctor’s appointment today, and am hoping to get some relief from my pain tomorrow, so if you could say a little prayer for me that would be amazing. I’ll be back on this little corner of the Internet soon, but wanted to write a quick update about what’s been going on lately since I haven’t been great at keeping y’all updated. Love and hugs to you all.

A Very Special Someone

I am going to end up with someone very special.

Do you want to know why I think this? Because I have a chronic illness, which makes dating me worlds more complicated than the average person.

I have been dumped because of things I can’t control — like my skewy autonomic nervous system, which often makes me feel sick or unable to do normal twentysomething activities. People don’t always sympathize with the struggles I go through every day, and I know it is incredibly difficult to see someone you love hurting.

My guy doesn’t just have to be a physical supporter for me, but he also has to serve as an emotional rock when I get frustrated with life. Some days are more painful and exhausting than others, and sometimes I just can’t think straight through the dizziness and brain fog. I need someone who will be patient with me and remember that I have a good heart.

Some days I will be cranky, but I don’t mean anything by it — I’m just not feeling well. So the last thing I need in a partner is someone who can remember how much I love him, even on the hard days. I need someone who will keep in mind that I’m still the same person, even when I’m incredibly sick and some of my best traits might be hidden behind pain. He will need to be able to remember that I still love him with all my heart, I’m just sometimes too darn tired to show it.

People like this aren’t a dime a dozen. Unconditional love is really difficult to find, and meeting someone who is willing to start a relationship with someone who already has complications isn’t always easy. The people I have met, though, who have been willing to go through the hard stuff in the beginning of our relationship are so incredibly special. These are the people who will be there for better and worse, and this is the kind of guy I eventually want to end up with. I guess in some ways I am lucky that I’m not always the easiest person to love since I have no choice but to weed out people who won’t stick around through tough times. I will end up with a 1 Corinthians 13 man.

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Today’s lesson: Take whatever it is that makes you feel different or unlovable, and realize that you are beautifully unique and you are stronger because of the struggles you have gone through. Realize that not everybody will love you with them, but the right person will absolutely love the entire package you have to offer. Just because you have a disability, baggage from your past, or struggle with something today does not mean you will never find love. It just means you need to wait for someone really, incredibly special to be a good fit for you. People like us kind of lucked out in that regard, I guess, because we can’t settle for an ordinary love. We have to be patient and wait on one that will hold the test of time and make it through the crazy curveballs life throws at us.