Cynical

This week has kicked my butt. There is really no nice way of putting it. Monday was rough. It was one of the worst of those Monday’s I’ve had in a long time. Last summer I started a job that I was really enjoying but unfortunately thanks to EDS, I had to have shoulder surgery in September and January which meant time away from my job. After lots of conversations with my employer about me planning to come back and helping them find someone to fill in for me while I was unable to work, I was totally blind sighted when I received a text that said they wouldn’t be employing me anymore. This wasn’t even a text to let me know, it was in response to me asking what my schedule would be next fall. It was after I put off scheduling classes for almost a month because of being led on by an employer that I would still have a job. It was after hoping that the person I hooked up with a temporary job would have the decency to to say “hey, this isn’t right to do to Syd.” But none of that happened. People suck. They’re selfish, they lie and they don’t treat others the way they want to be treated.

Along came Tuesday. And if I’m being honest, Tuesday was pretty “Monday-ish” too. My back has been bothering me for months now and after waiting it out and doing stuff my physical therapist recommended to try and help with no relief,  I finally went to the doctor. My back and legs hurt so bad that I was in tears almost every time I drove in the recent weeks. I’d been sleeping on the floor because it’s the only way I can get somewhat comfortable. Those of you that don’t live with a chronic illness don’t fully understand the stress and anxiety that comes with a simple doctor’s appointment because when you have something like EDS, there’s rarely an easy fix for your problems. So I went to the doctor. She was concerned. She sent me for x-ray’s that day and started me on prednisone. Yay, now not only was I mad because of losing my job but now I was going to be full on crazy for a week thanks to the steroids. And I still didn’t have answers about my back. Or a job.

Hump day! I got a call first thing Wednesday morning from my doctor’s office that she was concerned about my x-ray’s. She was sending me to a pain management doctor to get shots in my back to hopefully help relieve my pain. I couldn’t get an appointment with them until mid-June. So I went to my next lines of defense and stopped by to talk with my physical therapist about what he think’s I should be doing and I called my orthopedic surgeon at VCU to hear his thoughts. Both were concerned that without an MRI we’d risk missing something that’s going on because we would’t have a full diagnosis. So I now had 3 different professional opinions. 1.) Treat the pain and hope it goes away. 2.) Treat the pain and rehab it. 3.) See surgeon because physical therapy is a 50/50 shot when you have EDS. I was at a loss. These are all medical professional’s I respect and trust. I was in tears after hearing different answers from all of them. Sometime’s life sucks. I didn’t deserve to be born with this ridiculous genetic condition that leaves me with so many problems and so few answers. But there’s not a damn thing I can do to change it.

The silver lining to Thursday is that VCU’s Sport’s Medicine department is amazing and they got me in for an appointment at the Short Pump clinic Thursday morning. The downside is I had to ride for almost 2 hours in the car and couldn’t sit down once we got there because it was causing so much pain after that car ride. I saw a great doctor who put me on some more medicine and wanted me to try physical therapy and said to call him ASAP if I’m still feeling bad in 2 weeks. So still no definite answers. My doctor at VCU had concerns of instability and all kinds of other issues EDS can cause and was praying that this is something that will go away with time. The car ride home was brutal.  I was hurting a lot and there’s nothing that really helps. This seemed to be just another day of hopeful doctor’s not having any real answers on how to help me. It was yet another shot in the dark with the trial and error process that is most of the treatment for EDS issues. Thursday felt like just another reminder that no matter how lovely your medical team may be, chronic illness sucks.

Throughout this week I’ve said so many time’s I’m going to become cynical. I’m done being a good person who helps other’s because it’s the right thing to do. I’m done doing anything that isn’t self serving. I’m tired of trying to be a kind person in a world where other people continue to be crappy. I’m tired of the harsh reality that not everyone would do for me what I would do for them. I’m tired of people being so self involved that they lack empathy for anyone. And unfortunately it’s all across our world today. We live in a very cynical society. We’ve all been so hurt and broken by others and by the harsh realities of life that we become callous and closed off. It’s easier to hurt others before they hurt you or just not let them in at all. It’s easiest to put yourself first, always.

Well today is Friday and I’m choosing to not be cynical. Instead of looking at what sucks, I’m choosing to look at the blessings in my life no matter how awful this week has been. I’m thankful that even though I lost my job on Monday, I got a call within hours of applying for another one and will hopefully be starting that job soon. I’m thankful that on Tuesday even though my back pain was at it’s worst, I got to grab coffee with a friend that God placed in my life at just the right time. I’m thankful that on Wednesday I was reminded that I really do have a whole team of amazing people who are always willing to go above and beyond to try and provide me with the best medical care possible. Even when that means they have to collaborate and get creative with my treatment. I’m thankful that on Thursday when I told my mom I was going to start being a crappy person because it’s what everyone else does she literally laughed in my face and said “honey, you can try, but I know you don’t have it in your heart to do that.” And finally, today I am so very thankful for a God who has placed enough love in my heart to not allow me to have the ability to stay cynical for very long.

My prayer for everyone who reads this is that you don’t let life make you cynical. I pray that you choose love, tolerance and kindness in the face of the reality that our world is filled with so much hate and hurt. I pray that you walk so closely with Jesus that any negativity you carry with you is overpowered by the daily blessings that are overflowing in your life.

Intelligence Is Sexy Quotes

Overwhelmed

Have you ever looked up the definition of overwhelm? According to Dictionary.com it means these two things:

  1. To overcome completely in mind or feeling
  2. To overpower or overcome, especially with superior forces; destroy; crush

Clearing up just exactly what the word overwhelm means helps me explain just how I’ve been feeling lately. This is the word I have been using relentlessly for a few months now to describe how I feel. I’m mentally and physically exhausted and overwhelmed. And if I’m being completely honest, shoulder surgery #8 isn’t a drop in the bucket compared to the anxiety that has overwhelmed my life lately. The anxiety that has crushed my life lately. Anxiety isn’t just something that you can turn on and off. It isn’t just a choice to “not worry about things anymore.” If it was that simple, believe me, I’d of saved myself the trouble. 

I do a really good job at being very quiet about my anxiety. I can put on a happy face and be social and act like everything is fine when in reality my mind is going in a million directions about everything that seems to be going wrong in my life all at the same time. I’ve had 3 major surgeries within 12 months. I had 8 shoulder surgeries before I could even legally have my first sip of alcohol. I’ve spent more hours in physical therapy than any other patient at my PT clinic ever has. (I’m not exaggerating, they’ve literally told me I’ve set the record for most times in PT at their office.) I face a life with a chronic illness that has been anything but kind to me lately and that absoutley terrifies me. Ehlers-Danlos Syndrome is chronic. It’s not going away. Doctors can’t even tell me if there is a chance that it might get better. How is that not going to mess with your head? I’ve spent more nights than I can count crying myself to sleep because I’m so exhausted from fighting every day. There are days when I’m just completely done fighting. I’m tired of being strong. I’m tired of people telling me I’m strong. I want to get mad. I want to grieve the life that I don’t get to have because of this stupid genetic monster that I didn’t ask for. 

So that’s what I’ve done. I’ve been mad. It’s consumed me. I’m pissed that I’m not allowed to go to the gym right now. I’m pissed that I haven’t been able to go for a run since September. I’m pissed that I spent my 21st birthday in a sling. I’m pissed that I can’t drive. I’m pissed that I’m off a semester from school. I’m pissed that my shoulder scars aren’t symmetrical. If you can name it, I’ve been pissed about it. I’m over being all rainbows and sunshine about my chronic illness because not only am I physically fighting every day because of EDS, I’m fighting an even harder mental battle. And unfortunately, I’m most definitely losing that one. 

It’s been much easier for me to be mad about it that to actually admit how scared I really am about the unknown. I have been so mad at God lately that I just quit talking to Him. In my mind it felt like I don’t know what I did to deserve everything I’ve had to deal with and it was easier to say “it’s God’s fault” and just quit talking. And as that happened, my anxiety overwhelmed and consumed me. 

Recently, I was having a somewhat good day (as much as my anxiety would allow me) and then randomly it was like a punch to the gut. I was back in that angry, scared place. For no reason. I broke. I hit rock bottom. I laid in bed, bawling by myself and finally realized I wasn’t going to get a grip on any of this if I wasn’t going to get my relationship with God back on track. So, I reluctantly flipped open my bible and stumbled across Psalm 61:2. 

“From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I.”

There was that word I had been using constantly to describe how I was feeling right there in front of me. “When my heart is overwhelmed” WOW. No subtlety this time, God. My tears that were first from an overwhelming anxiety became tears from an overwhelming love and sense of calm. God works in a lot of mysterious ways, but there’s no mystery that He was talking to me this time. 

I’m far from perfect and I’m not going to ever pretend that I am anywhere close to perfection. I’m a broken mess. But I’m God’s broken mess and I couldn’t be more thankful that He continues to remind me even when I’m at my worst, He is in control. I may not always realize it, but He is carrying me through those tough times. Some days it’s hard to remember, but I’m the daughter of a king and I am so loved by Him and for that I’m so undeservingly blessed. 

I still struggle with my anxiety daily, but it’s not a battle I’m trying to fight alone anymore. So, please remember when you start to become overwhelmed by anything big or small, give it to God because we can’t fight our battles in life alone.

Did you know I’m a drug addict!?

So first off, I need to clear up my title. I am most definitely NOT a drug addict. At least not by my own standards, by the standards of my pain management team, by the standards of really anyone who knows what it’s like to live with chronic pain or by anyone who knows me. Unfortunately, to ER doctors who rarely know very much about Ehlers-Danlos Syndrome, I am nothing more than a druggie who enjoys dislocating her shoulder in the middle of the night just to come in and get IV pain meds. This couldn’t be further from the truth. My close friends and family members know how hard it was for me to finally accept that some days I am going to need more than Tylenol to fight back against my EDS. I’m stubborn as hell and I take a lot of pride in the “suck it up” route I choose a lot of days when I’m in pain. It’s just been within the last 6 months that I’ve finally agreed to talk to my primary care physician and rheumatologist about a real pain management program. My PCP has been pushing me to do this for quite some time, but I’m stubborn and to me admitting to needing a pain management plan felt like I’d been defeated by my disability. I was losing the fight. I’m very thankful that I have such a diligent PCP who has researched and gone above and beyond to learn as much as possible about EDS to be the best physician she can for me. She is a true blessing in my life. 

While I have a pretty solid pain management plan in place that 99% of the time is enough, this past week I have had the worst flare up I have ever experienced in my life. I literally haven’t done much other than lay in bed with a heating pad on my back, ice on my shoulders and knees and lidocaine patches on my neck. I’ve been feeling pretty rough to say the least. On top of having a nasty flare up, my shoulder decided it couldn’t wait one more week for me to have surgery, it needed to dislocate just one more time! So, in the middle of the night we were headed to one of the worst ER experiences I’ve ever had. We get there and I told them about my shoulder but I kept trying to explain that not only did my shoulder hurt (obviously, dislocations hurt!) but my neck and back hurt almost equally as bad. I tried to explain my flare up but my nurse wasn’t listening to me and literally walked out of the room while I was in the middle of explaining it to her. Then there was my doctor who was skeptical from before he even walked in my room and he wouldn’t order the X-ray I told him they’d need to be able to see it because it’s a posterior dislocation (which he said is too uncommon to have happened to me) and he told me I was fine but if I want he’d be willing to give me a shot of Valium and pull on it a little. Which is really weird that he claimed I was fine because doctors don’t generally do manipulation unless there’s something wrong because that can cause more problems if you’re tugging on something that isn’t messed up. I politely declined his offer as he refused to give me any pain medication (not to take home, just a little right then so I could tolerate him reducing my shoulder) and he lectured me on the “bad habit” I was developing of coming to the ER. I’m sorry, am I just supposed to leave my shoulder dislocated!? I was so over this guy before he even got in the room (I have seen him in the past and he doesn’t have a clue about EDS.) 

We left and went to UVA where I was treated by the triage nurse with compassion and understanding that having a flare up and having EDS in general is just a tough thing to deal with and they got me back to a bed right away. They took X-rays and guess what, my shoulder did need to be reduced (that’s medical talk for popping back that sucker back in place!) I was right! The attending physician came in to question me about why I had been in another ER and ask a billion questions about my pain management plan and lecture me on why I shouldn’t be getting prescriptions from multiple doctors. (Apparently HIPAA just isn’t a thing if someone thinks you’re a junkie and someone called them and told them *cough cough, the doctor from the other hospital* that we might be coming there.) And just so this is clear, I haven’t ever asked an ER doctor to send me home with a prescription. I’m very specific that I leave that up to my PCP or orthopedic surgeon. The same doc that was lecturing me just a few minutes earlier had to come back in and say “oh, the radiologist definitely saw something on your X-rays, we’re calling ortho right now and we’ll get you an IV and some medicine.” So another doctor who had rudely assumed I just wanted drugs had been proven wrong. 

Apparently chronic illness means you must be a junkie which couldn’t be further from the truth. On a good day my pain is at a 4 or 5, so when I’m at a 9 or 10 I can handle it a little better than those of you that have the luxury of living your life at a zero most of the time. Luckily, the ortho resident that was there was one I knew from my shoulder surgeon’s office. He knew what’s up. He knew I wasn’t pain med seeking and that I just wanted my shoulder back in place. He came in, ordered me some meds and had my shoulder reduced in under 5 minutes. 

All of this could have been done at the other hospital if the doctor would have actually listened to his patient and admitted he didn’t know much about EDS, but instead he made very obvious and unfair accusations that I was drug seeking. I even offered to pee in a cup for him, but that wasn’t good enough. Once you’re a druggie, you’re not a person anymore. You’re a parasite that they just want to get rid of. Accusations like these are going to cost people their lives and cause people like me with chronic illnesses to live in pain because they’re scared of the judgment a doctor is going to make on them. So, physicians, nurses, anyone in the medical field and really anyone in general, don’t assume because someone has chronic pain that they just want drugs. It’s unfair, and it’s wrong. I don’t want drugs, I want more than anything to not need to take pain medication but that’s not a reality for me. So please don’t label me as a junkie because I have pain and I use pain medications sometimes. Because I use them responsibly, I only take them when I absolutely need them and I take the amount that I’m told to take. Don’t label me if you don’t understand what I’m living through. Because I’m NOT a drug addict. 

Post-reduction! Please disregard how crazy I look, I was going on 2 hours of sleep, 7 hours with a dislocation and a whole lot of crying. I was a hot mess by this point. But a happy hot mess at least because my shoulder was finally back where it’s supposed to be!

Dear Doctor That Listened

Dear Doctor That Listened,

First off, I’d like to thank you. Unfortunately when you have an invisible illness, especially one that’s not well known, it’s easy for physicians to assume your patient in the ER is dramatic or lying to you. But you were different than the dozens of other physicians that I’ve encountered. You were genuinely concerned. You took the time to ask me what works for me and what you can do to help me get better. You didn’t pretend to have all the answers. You didn’t pretend to know much about Ehlers-Danlos Syndrome. You didn’t pretend that the dislocation I had was a common thing for normal people (because FYI, a posterior shoulder dislocation is super uncommon.) You believed me. You gave me the medications I told you I knew would work. You made me a part of the plan to get me better. You were an advocate for me. You asked for help from other physicians to make sure you were giving me the best care possible. You were kind and compassionate. When I told you I don’t need a prescription for pain medication because I don’t like to take it, your answer was “I am giving you one just in case.” And most importantly, you actually listened to me. So again, I thank you. 

One of the most difficult things in living with EDS is that a lot of doctors have trouble with their ego so when they come across someone with a condition that they “haven’t heard of since medical school” (an actual quote from one of my doctors) it’s difficult for some to set aside their pride and ask for help. They forget that one of the most important things as a physician is to listen to your patient. We know our bodies. And when it comes to having EDS, I can promise you we really know our bodies because we have to. We are more in tune with them then your average person. We only come into the ER when we absolutely have to. Telling me “well if you’re shoulder dislocated so easily, why won’t it go back in that easily” isn’t helping. Assuming that I’m not in pain because I’ve had this happen so many times that I now can generally keep my composure isn’t helping. Telling me I’m wrong after not taking the specific x-ray that I told you was necessary to see it isn’t helping. Taking all the extra time to take even more x-rays to then come in my room and sheepishly say, “oh you are right” isn’t helping. As sad as it is, I’d say at least 50% of the ER doctors I’ve encountered act this way. Their pride is more important than their patient. 

So again, doctor that listened, I thank you. I thank you for being the best physican you possibly can even when that means asking for help. I thank you for swallowing your pride and admitting you don’t know everything. I thank you for remembering that just because you hear hoofs doesn’t mean it’s a horse, sometimes it’s a zebra.  And lastly, I thank you for not downplaying my invisible illness and treating me with the kindness and compassion that every one of your patients deserves. You have impacted me far more than just reducing my shoulder dislocation, you’ve helped me remember that there are still good physicians out there who will always do whatever they have to in order to help their patients. 

Take a walk in my hooves…

So I’m kicking off this blog with a little pet peeve of mine. As someone who has had lots of surgery and things not going right with my body pretty much my whole life, a lot of people have felt like it’s okay to joke about it as if it’s a light issue. For example, all through high school and still pretty frequently (but it was definitely worse in high school) I got jokes constantly about my shoulder problems. “Hey Syd, don’t throw a shoulder out!” or “Hey high five me, oh wait you can’t!” or just simply “Are you seriously having surgery again?” followed by an eye roll. I just want to know what exactly is so funny about that? Is someone being in an insane amount of pain and having to go to the Emergency Room for a dislocation funny because I don’t see the humor. You wouldn’t dare go up to a cancer patient and say “really, you’re going for chemo again!?” Living with Ehlers-Danlos is no different than any other chronic illness except unfortunately it falls into the category of an invisible illness so basically I look like I’m fine while I literally have to fight my body every single day just to function like a normal person. Oh and did I mention that there’s no cure, most doctors don’t even know how to treat it properly AND it gets worse as I get older? Those jokes don’t seem quite as funny once you step back and see that I live with chronic pain (literally almost every single day I have some type of pain that I have to suck up to live a normal life,) chronic dislocations and subluxations of multiple joints, bones that break easily, chronic headaches, a much higher risk for aneurysms and heart problems and not all pain medications or sedations work properly on me all thanks to the little genetic monster that is EDS. So to sum it up my body just simply does not do what it is supposed to. So fellow #ZebraWarriors out there, keep fighting and don’t continue to let people make jokes about what you’re going through, educate them. And those of you that think small jokes like that are harmless, you have no idea what kinds of battles someone may be fighting so live by this: if you can’t say anything nice, don’t say anything at all. 
PS. here’s a link to explain the zebra references 🙂 

Why the Zebra?

My Mom is the real warrior 

It’s hard to wrap my head around the fact that almost 2 weeks ago I went in for my seventh, I repeat, SEVENTH shoulder surgery. I’m 20. I shouldn’t have had seven surgeries in my lifetime, nonetheless, seven just on my shoulders (2 on my left and 5 on my right.) With that being said, I’m very thankful through all of this (especially today) for my mom. It’s easy to forget how much my having EDS impacts those that I love. For my mom it is just as painful for her to watch me live with EDS and not be able to fix or help me,  but she does it flawlessly without ever showing me that she’s scared or worried. She calls doctors and physical therapists and specialists tirelessly just to simply see if there are other answers. She goes momma bear on ER doctors that don’t take EDS or my pain seriously. She still gets in bed with me when I’m crying and not feeling good because I’m just tired of everything and she gives me a shoulder to cry on. She tells me everything is going to be okay. She prays for me and with me. She is the strongest person I know and has the most beautiful heart that she shares with everyone. She’s sassy and gives me a laugh when I need one the most. I’m so incredibly blessed to have her as a momma and a best friend. So thank you so much, Mom, for holding my hand through another crazy adventure. I love you to the moon and back!