What Do You Do When Your Doctor Gives Up

When most people get sick, they call their doctor and schedule an appointment, trusting that their doctor will be able to diagnose and treat whatever the ailment is.

That is not the case for me. And for thousands of others like me.

When I go to the doctor, there’s no guarantee that they’ll be able to help me. There’s no guarantee that they’ll be able to tell me what’s wrong or how to treat it.

I’ve been in pain my entire life. As a kid, I was told that the pain was just growing pains. I think I was in high school before I realized it wasn’t normal for people to be in pain all the time. But if it was normal for me and no one ever told me otherwise, how could I have known that it wasn’t normal for all people.

I wasn’t diagnosed with Ehlers-Danlos Syndrome until I was 25. Before that, I never even knew that EDS was a thing. That means that for 25 years, I went to doctors and explained my pain and my symptoms and no one could pinpoint the cause. I’ve been put on so many different medications that I’ve lost count. I’ve been a medical guinea pig.

But now, my doctors don’t have answers. Nor are they willing to take the time or energy to search for them. My neurologist, who has been the one doctor on my team who I’ve really liked, told me that there’s nothing more they can do except monitor and manage my symptoms. Symptoms that include declining memory and cognitive function, nausea, dizziness, and a ridiculous amount of pain.

I used to be active. I was a runner and a personal trainer. I was able to run and play with my kids. We could ride bikes. But now my vertigo/balance have gotten too bad and I’m physically unable to ride bikes with my kids anymore.

My brain is incredibly scattered these days. Sometimes I forget what I’m saying while I’m in the middle of talking.

I’ve started looking for medical care elsewhere. But the problem with looking for medical care elsewhere is that it’s not covered by insurance. I found a few different specialists who are willing to take on my case, but it costs money that we simply don’t have. I haven’t been able to work since October and am having a hard time getting approved for disability. I even started a GoFundMe campaign to try and raise the money.

Honestly, I’m getting desperate. I just want answers. I’m only 31 years old. God willing, I’m not even halfway through my life and my doctors have given up trying to give me a better quality of life.

But one thing I’m determined to do, no matter what, is not give up hope. There has to be hope for a better quality of life out there. I refuse to believe that this is it. I refuse to believe that I’ll never be able to ride bikes with my kids again.

My doctors may have given up on trying to help me. But I have been through too much and come too far to even consider giving up now. Just because the professionals have given up on trying to help me have a better quality of life doesn’t mean I have. I can’t accept that THIS is all there is left for me. I refuse to accept that.

There’s hope out there. I just need to find the right doctor who’s willing to take the time to look at the big picture.

This isn’t the end for me.

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Ten Years in the Making

Ten years ago, I stood up at the front of a church, in a beautiful dress, across from a handsome man in his military dress uniform and said, “I do.” I was a 21 year old kid who knew nothing about finances, marriage, or reality. But still, his steady hand convinced me that we would, somehow, be okay as we walked through this crazy life…together.

I grew up a child of divorce (I say this as just a simple statement of fact, not to insult or disrespect my mom), so I did not know what it looked like to be a wife. I never had a solid example of what married people did or how they interacted with one another. My husband’s parents are still married and have been (I think) for about 35 years. He’s seen married people fight and reconcile. He’s seen his dad care for his mom through health crises with love and grace. He’s watched their marriage unfold over the years and he learned how to be a husband.

We didn’t have a long engagement and, in fact, I was pregnant with our oldest daughter at our wedding. I was a 21 year old college student and Coast Guard reservist and he was a 22 year Private in the Army. Statistically speaking, we should’ve been divorced within the first two years. But somehow, we survived those years.

The first five years of our marriage brought a couple of kids, a handful of deployments, and a few dozen training missions ranging from a week to a couple months away at a time. It was a stressful time for both of us, but we “kept on keeping on.”

But during that time, I was “healthy”-ish. I hadn’t yet been diagnosed with Ehlers-Danlos. I had random injuries and miscellaneous illnesses and a couple hospitalizations; but overall, I considered myself to be in good health.

I received the EDS diagnosis is 2014. All the random injuries, miscellaneous illnesses, and constantly increasing pain I’d had throughout my entire life finally made sense.

I went home and told my husband. I pulled up the educational material on EDS. And as he always has been (maybe a result of being in the Army or maybe just because of his personality), he had very little emotional reaction (which, if I’m totally honest, is one of the biggest things that has always driven me crazy about him). While I was a basket case of emotion and uncertainty, he was calm and unmoved. He wrapped me in his arms, told me to take a deep breath, and reminded me that we were in this together.

The next few years were a whirlwind of doctor’s appointments, injuries, surgeries, and hospitalizations. It was as if one issue sparked another, which caused something else, and so on and so forth… It was never ending. Some of those medical incidents were emergent and/or life-threatening, while others were more routine. But the one thing that has never changed, through everything, was the constant support of the man who promised to stand by side through sickness and health.

Now, here we are in 2019. In the last two months I have been admitted to the Neuro ICU twice. I have a much longer list of medical issues now and nearly all of them can be traced back to EDS as the initiating catalyst. In the last two months, there have been several times where the pain was so intense and so severe that I wondered if I was actually going to die this time. Would my husband become a widower and be left alone to raise our children? Would my children’s last memories be of me in a hospital bed?

I’ve cried a lot of tears over the last couple of months, but one thing has not changed…the stoic man next to me, holding my hand. Ten years ago, his lack of emotion drove me crazy. Why couldn’t he just give me some indication of how he felt? But today, I’ve come to realize that, that lack of emotion is what balances out my excess of emotion. As I shake with an overwhelming amount of emotions that I don’t know how to deal with in my malfunctioning brain, his steady arms around me are a reminder that we will get through this one too.

My husband’s love language is “acts of service.” He’s a doer. He does laundry and dishes. He keeps our vehicles running with as needed maintenance and preventative maintenance. He bathes the dogs and vacuums the floors.

Ten years ago, when we said “I do”, I loved this man with all my heart. I loved this man as much as I was capable of loving him at that time. But in retrospect, I loved him for shallow reasons.

Today, I love him differently. I love him more deeply. I love him more purposefully. I love him for his steadiness. I love him for his persistence. I love him for the way he loves so fiercely and without condition. I love him for the way he is protective of me (both physically and emotionally). I love him for the way he loves our children. But not only do I love him for all these reasons, I respect him. I respect him for all of this and so much more.

He’s not a perfect man, but he’s perfectly imperfect for me.

Ten years ago we were 21 and 22 year old kids who thought we knew everything. Turns out, we knew very little about the real world. And ten years from now, we’ll probably look back and realize that we still don’t know as much about the real world now as we’ll know by then.

This life may be crazy and overwhelming at times, but I couldn’t be more thankful for the man that God gave me to do life with.

The Chronic Pain Cycle

Chronic pain is an intensely difficult for people to understand if they’ve never been through it first hand. And sometimes, even when you’re the one living with it every day, it’s still hard to understand.

The last few months, I’ve had pain that has just gotten worse and worse with very little relief. When you’re in excruciating pain every day, your brain chemistry changes and your personality changes. There are good days and there are bad days. Some days, I can go to the gym and lift heavy weights and ride my bike. Other days, I can barely get out of bed because the pain is so bad.

But with chronic pain comes a never-ending cycle of coping. This cycle is pretty similar to the stages of grief, but it’s not something you just go through once, it’s a continuous method of coping.

After diagnosis, there’s the initial grief…as anyone would grieve after receiving any life altering news. How did this happen? Did I do something to cause this? Will life be like this forever? Will the pain ever go away? How much longer will I be able to keep working? How will this effect my ability to be a mom as I age?

Getting a diagnosis hit me like a ton of bricks. My whole life, I had always felt like something was wrong, but when I got the diagnosis of Ehlers-Danlos Syndrome, it was like I had punched in stomach. I wasn’t ready for it. I wasn’t prepared to hear the words “daily pain” and “no cure”. After the diagnosis, there’s an initial grieving process that we must go though. I had to grieve the loss of the life that I had dreamed of for myself. I had to accept that this would be my life, for the rest of my life.

But there’s a whole other coping process going on as well. When the pain never ends, neither does the cycle of grieving. Once I grieved through the initial shock of the diagnosis, I picked myself and carried on with my life. But the thing is, there’s only so long that a person can stay strong for.

When it comes to chronic pain, sometimes it just breaks you. You can handle the pain and the other symptoms over and over, every day. You push through and enjoy your life. Until you just can’t take it anymore. You break down. You have to cry and let it out. The pain just builds up so much and you break. Your spirit gives in and it can’t endure anymore suffering and you panic at the thought of, “will I feel like this forever?”

One of the most terrifying feelings I’ve ever experienced is the fear of not knowing if the intensity of pain I was feeling at that exact moment would ever cease.

The fear then leads way to anger. Anger that I have to deal with this. Anger that there’s nothing I can do to make it go away. Anger that doctor’s don’t listen. Anger that there are medications and therapies out there that would help me, but I’m not allowed access to them because of the way our laws are set up. Anger that the people who make the laws have never actually had to deal with severe chronic pain.

Now, when I reach this point I’m the cycle, I’ve learned that I have to let myself feel the emotions. I have to remind myself that this is NOT permanent and I have to ride it out. If let myself forget, even for a moment, that “this too shall pass” (it may pass like a kidney stone, but it’ll pass), I get caught in a spiral of inconsolable grief and the desperation will consume me. And once I go down that rabbit hole, it’s much harder to claw my way back out.

There have been times that I’ve tried to just stuff my emotional response to the pain. If I pretend it’s not there, maybe it will go away. But let me explain why that doesn’t work…when I ignore it, it builds up inside of me. My anxiety spikes and (in the moment) it’s hard for me to figure out why. If I try to push through when my body is, very obviously, telling me to rest, I will end up deeper into that spiral of inconsolable grief.

Once you find the right doctor and you’re able to find the right treatments and therapies, you’re able to process much quicker to the ‘hope’ stage. This part of the cycle is tricky though because, sometimes, it could take weeks or months to find something that helps relieve the pain. Sometimes, you encounter doctors who are just plain unwilling to help.

The best doctors are the ones who take the time to listen and respect what you have to say. They’re the ones who understand that they don’t know what it’s like to live inside the torture chamber that is your body. Those doctors are the ones who give you hope.

And once you reach the hopeful part of the cycle, you don’t know how long it will last. Because, remember, you can only be strong and “just deal with it” for so long until the cycle starts all over again.

Chronic illnesses are unpredictable. You never know when a flare is going to strike or how hard it is going to hit you. But you have to be prepared, at all times, for your body to break out a sudden and powerful assault against itself. And sometimes that fear can be more crippling than anything. There’s a fine line (a VERY fine line) between listening to your body and resting and taking it easy versus proclaiming that you will not allow this illness to control your life.

If you’ve been fortunate enough to never feel the agony and despair that is chronic pain, count yourself incredibly lucky. But take a moment to imagine…imagine the pain you felt last time you were in a car accident or had the flu, now imagine feeling that pain all day, every day, for the rest of your life. That doesn’t sound very encouraging, does it?

You may be in more pain than you ever thought humanly possible, but you’re also a lot stronger than you’ll ever realize.

Happy New Year, fellow spoonies. May this new year bring you rest and comfort and relief.

The Curse of Being a Medical Anomaly

I never dreamed that one day I would wake up sick and I’d never get better.

My life wasn’t always this way. I used to be *relatively* healthy. But I’ve always had pain. As a kid, doctors always said that I just had growing pains. But as I got older, the pain got worse and worse.

Every time I would go to the doctor and explain what was going on, they would do lab work and run tests. And every time, it would all come back within normal range. But when you’re a medical anomaly, normal isn’t necessarily your normal.

At the age of 26, I finally had a doctor who listened. I had a doctor who sat down with me long enough to go over my ENTIRE medical history…something that no doctor had ever done before. She was the first and only doctor I’ve ever had who was willing to actually take the time to consider that what was going on with me could’ve been something more than the typical or common ailments. She was the one who diagnosed my Ehlers-Danlos Syndrome.

It’s almost like, when they can’t figure out exactly what’s wrong, instead of admitting they may not know what the issue, most doctors will accuse you of faking it or being dramatic instead of investigating further.

Now, I recognize that it is difficult to connect things like joint hypermobility, clumsiness, chronic nausea/stomach pain, and tinnitus. However, I do think that many doctors have become complacent. Doctors are taught in medical school, “when you hear hoofbeats, think horses not zebras.” But what happens when you’re a zebra, not a horse? Doctors are encouraged to NOT take the effort if they don’t easily know what the issue is.

It’s like doctors don’t realize, understand, and/or care that their actions or inactions directly impact my quality of life. They don’t realize that their negligence to treat my symptoms may cause me to be unable to go to work, which results in lost wages, which results in financial stress, which causes anxiety, which causes a worsening of the original symptoms…it’s a cycle that is the direct result of a doctors decision.

Sometimes, when the symptoms get too severe, I physically cannot play with my children…which is something I will never get back. My children will never be little again. I only get one shot at making childhood memories with them. The physical pain and other symptoms aside, this is most painful thing about being dismissed by doctors. My kids will never be little again and I will never get this time back.

Going to the doctor, for any reason, when you have a chronic illness is weird.

It’s like, imagine everything in your house is on fire…you’re standing there and the fire department pulls up. They ask you to describe the fire to them and MAYBE, if they can figure out what caused it, they can put it out.

You start to explain that some areas are more enflamed than others, but that there’s fire everywhere. They stare at you dumbfounded, as if they don’t understand the words you are saying. So you try to elaborate. You explain the fire in the curtains is the biggest, but the fire in the photo albums might be doing the most damage. But also, the fire in the couch is incredibly inconvenient.

The fireman takes a look around and notices that your TV is on fire and suggests the cause to be electronic-fireitus, but if that were the cause, there would also be some fire in the DVD player. You try to hide your irritation as you sigh and explain to him how the DVD player has actually been on fire for years. You didn’t mention it because it’s always been a relatively small fire, compared to the rest of the fire. You point out to him that the DVD player fire is right next to the bookshelf, which has much more fire.

He glances over at the bookshelf and shrugs. He tells you not to worry about bookshelf fires, those just happen sometimes.

He begins to notice your frustration rising and suggests that the fires would probably all go away if you stopped being so negative about them. He advises that if you’d lose weight, they’d probably just go away on their own. He tells you that you should try doing yoga to help your relax and stop being so dramatic about the fires.

We spend our lives being told that doctors are here to help. They say they want to help make people’s lives better. But when it comes down to it, they don’t see their patients as anymore than a name on a piece of paper. They’ve taken away the humanity of it.

There are treatments and medications that can improve my quality of life and alleviate some of my pain, but I am at the mercy of doctors to determine whether or not I am allowed access to them.

We’re supposed to trust doctors to help. To listen to us and treat us. But what about when the majority of the medical community fails you? Then what do you do? What are my options when I run out of options?

Now, I’m not saying that ALL doctors are like this. Some doctors still care. Some doctors recognize you as an actual person. Some doctors won’t give up until they’ve found the root cause of the issue. But I haven’t found that here. Before we moved to Georgia, we lived in Texas. The doctors I had in Texas were some of the best doctors I’ve ever had. But here in Georgia, it’s a whole different story and it’s a shame.

It’s a shame the patients have to be dying (and sometimes not even then) to be taken seriously. My heart breaks for the number of people who live in agonizing pain because of doctors who won’t listen.

I’ve heard doctors say, “don’t confuse your Google search with my medical degree.” To which my response is…don’t confuse your medical degree with the crap I’ve had to live with.

To all the people out there being ignored by doctors…you are your best advocate. Keep pushing and don’t give up until you find someone who will listen.

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