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.

b l a c k o u t.

Vrrrroosh.

My pulse is racing and I feel the floor beneath my bare feet become colder, harder.


Have you ever fainted before? It’s scary.

I’ve become kind of a pro at passing out, mainly because I have had a lot of close calls, rather than eating the floor on a regular basis. Ever since I got sick with POTS three-and-a-half years ago I’ve learned what it’s like to faint.


My heart can’t stop. It keeps speeding up and feels like I’m going downhill in a car and my brakes just failed. Instead of being able to pull an emergency brake or slow the car’s roll, it speeds up at a terrifyingly alarming speed.

Thudthudthudthud.

Shit. I crouch to the ground as soon as my brain catches up to the rest of my body and realizes that I am going down, whether I want to or not.

This is what I’ve trained for.

My body has been trained for fainting. I have done it so many times that I know how to respond. Everything always happens so fast. Racing. Dizzy. Blackout. Nausea. Sweating. Falling. Ground — always in that order.

Ground.

As soon as I am down on the ground I feel the cold tile behind me. I’m cold and wet, but don’t really notice until my hand slips. The bath was a bad idea. It helps with the pain, but my heart can’t handle the heat. I feel around behind me, blind, just to be sure my head won’t hit the hard floor when I lie down in my postural position. I close my eyes and brace myself. There’s no change in my vision yet, but I hope it comes back soon, as my spatial awareness isn’t so great. This can pose for a dangerous problem when I’m on hard ground. Usually I black out on the plush carpet when I get out of bed too fast, but sometimes it happens in places that are a lot scarier than that.

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This is what blacking out looks like. It starts off looking like a crackly television, then turns to this.

My hands slide slowly behind my body as I sit on the floor and ease the rest of myself to the ground. I close my eyes, praying I won’t vomit and reminding myself to take deep breaths until it’s all over. I don’t know if one ever really throws up when they’re about to faint, as it’s never happened to me, but it always feels like I will.

Ten seconds go by. Twenty. An hour?

It feels like my time on the ground before my vision finally starts turning slightly colorful and blurry again is lasting a lifetime, though I know it couldn’t be more than thirty seconds. First it’s as if I’m wearing high prescription glasses that my 20/20 vision isn’t used to. Then everything gradually comes in to focus. I can finally see again and the blood rushes back to my brain.

Stupid, stupid, I think to myself as I realize what I had done. The water in the bathtub was too warm for a POTS patient, and I stood up way too quickly when I made my move to get a razor. I had hurt myself on accident by taking a high risk for a minimal reward. I hate not being able to shave my legs in the shower (because of the postural change that occurs when I do), and all I wanted was to have a smooth finish after my bath. I should have known better than to stand up quickly from a warm bath, but I want so badly to be normal again and not to think about every little move I make and how it’s going to affect me for the rest of the week.


Sleep.

Any time I have a close call with my heart acting up it makes me incredibly tired.

As soon as I gather the right amount of energy to safely stand up, I shut my eyes tightly and push lightly with my hands to lift the rest of my body up. I throw on a robe — not bothering to dry off — and walk with a blank mind and body into my bedroom and ease into my warm, soft bed.

Soon I am out again, but this time the darkness isn’t scary — it’s peaceful. My brain feels like it can’t function again because it needs rest, but that’s okay. I’m finally safe; I’m in the least likely place for my body to attack itself again.

 

A Rocky Start To Boxing

Oof, I mutter as I get hit in the head with a black boxing glove and fall to the ground.

Thud, thud, thud. My head is pounding. I can’t focus.

Boof. I get hit again as I try to stand.

My eyes attempt to focus on the bright dangling light, but my vision blurs. My head is throbbing. I can’t think.

The Everlast glove comes at me again, hitting the back of my head and knocking me down before I can stand. I feel a goose egg begin to form. Everything in the room is amplified. The crowd is cheering. The sound is making me nauseous.

Thud, thud, thud. The fluorescent lights make me feel ill. I wonder why they suddenly changed to strobe lights. Is this some kind of joke? Still can’t think.

It feels like I’m in a dream and I am struggling to wake up; every time I try to stand, though, I get hit in the back of the head. My opponent isn’t losing any sort of momentum as he hits me hard, again and again. His powerful blows are dancing to the rhythm of my heartbeat.

The announcer’s voice blares into the speakers. I cry and hold my ears in pain at the deafening volume. Why isn’t the sound bothering anyone else?

He hits me from a different angle and my head continues to throb. I wince in pain at the sharpness of the new blow. My eyes dart frantically around the room to find a way out.

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There’s an enormous red EXIT sign I rush to as quickly as possible. It’s my only hope.

I lie down in bed and hope this will relieve my pain. I drift off to sleep, and finally escape. Migraines are physically painful, and the only way to break free from their firm grasp is living life in a dream until they pass away.

I don’t really know how to end this post; I can’t think.

Guarded

My last relationship left me with dust and rubbish. It was as if a storm came in and demolished everything beautiful I had taken so long to build. How could someone else completely ruin me like that? When did I give him that kind of power?

I spent months sitting in the middle of the wreckage. I was paralyzed from the shock of it all and couldn’t move — until I saw a little flower peeking out from the middle of the place my comfortable home used to be. I cautiously walked over to it and took note of the beauty that was before me in such a gray space.

Finally after gaining my strength and seeking help from others, we rebuilt a new, stronger foundation. I had been naive last time, failing to build walls on my home and trusting the man I loved not to destroy it. This time I put up giant concrete walls. No one would even think about trying to break them down; they were my fortress and protection. Nobody could come in, but I couldn’t get out.

Then I met someone new. He tore down my hard, concrete walls and rebuilt a home with windows so the sun could shine through.

Now there’s a garden with flowers and I can come and go as I please. He can come inside and sit with me. I notice the clouds when they’re looming outside, but more days are sunny than not. I go outside and dance in the rain, and I have realized that a life filled with love is completely worth risking another storm. I now know that I can make it through any kind of weather that comes my way and that there is always going to be beauty in my life — even if it’s just a single flower in the middle of a bunch of ruins.

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This picture was taken by my beautiful friend Audrey, who also did my hair and makeup for our shoot. Check her out if you need a photographer in the DMV!