Shoulder Update

  For those of you who are interested in a little background on my experiences with my right shoulder here it is in a nutshell. If you want to skip straight to the update on my left shoulder just scroll down to the bottom :)

  My sophomore year of high school (2010) I was playing my second year of tennis for Ogden High. One day while practicing I went to hit a low ball and I felt something pop. I immediately knew something was wrong. I looked down at my right shoulder and could see that my shoulder had dislocated. At first I didn't feel any pain. I felt numb. I wasn't processing what had happened, and then it hit me. Unimaginable pain. I went to the athletic trainer and had her take a look. It was definitely out of socket but it wouldn't go back in.
 
  I went to multiple shoulder specialists in the ogden and salt lake area. X rays and a MRI was done, but no doctor could figure out how to fix it. That's when I found Dr. Metcalf up in park city. He looked at my MRI and made a surgical plan.

  Now keep in mind this was before we knew I had EDS so we just thought this was a tennis injury.

  We scheduled surgery in Dec so I played the rest of the season with my shoulder out. Lots of KT tape for me. When I went in for my surgery he found that my Labrum was more than double the size, it had not torn like we thought but had shredded. He sutured it all together and closed.

  When I woke up I was told that I had a nerve block and that I would be numb for 24-28 hours. They made sure I was ready to go and sent me home. On our way home from park city I told my mom that I could feel my stitches, she said that was impossible because of the nerve block. By the time I got home I was screaming. To this day I have never screamed like that before.

  It was like an out of body experience. I couldn't handle the pain. I remember screaming to my mom "I hope I pass out"because I couldn't handle the pain. None of the pain meds were making any kind of difference. I ended up in the ER because I went into shock. This is when we found out that my body metabolizes medication too fast so I don't respond to it.

  Rehab was awful. The most painful physical therapy I had ever done. I was stuck in a brace for 8 weeks. I was frustrated and ready for the experience to be over.

  I finally was cleared to play tennis again in June. He told me that there was less than a 10% chance that this would require surgery again. I played tennis all summer and all junior year. One day I put my back pack on and felt my shoulder pop out. Again. Only this time the pain was worse. It had gone out the back this time.

  I went back to my surgeon and he told me I needed another surgery and that I was done playing tennis. I made the decision to hold off on the surgery and play tennis the summer before my senior year and my entire senior year. This was one of the most challenging things I have ever done. The pain was awful and I was frustrated that it was holding me back when I was playing tennis. BUT me and my doubles partner went undefeated the whole season and then got 2nd in region. We also had the chance to go to State.

  I went back in to get surgery in Dec (2012). This time they had to drill into the bone and put 6 anchors in. This surgery was much worse. I had to stay in the hospital over night to be monitored since I didn't react to any pain meds. This time around I was put in my brace for 14 weeks and didn't have a functional shoulder for almost a year.

 After my second shoulder surgery my surgeon went to compare the two shoulders and actually ended up popping out my left shoulder. This is when we realized it wasn't a tennis injury, it was something more.

 For the last 5 years my left shoulder has been dislocating. It was just something I dealt with because I told myself I would never have another shoulder surgery. I have had a hip and 3 hand surgeries and to this day my shoulder was by far the worst surgery.

LEFT SHOULDER UPDATE.

 The last year or so I have noticed that my shoulder was popping out more and becoming way more painful. I was so focused on recovering from my 3 hand surgeries that I just ignored it.

  About 6 months ago is when it was to the point where it wasn't functional. It popped out in my sleep, when I drove, when I put clothes on, when I did my hair and pretty much anything else that required movement from it. I asked two of my physical therapists about it and they both said it was very loose. I finally decided to make an appointment with my surgeon.

  Wednesday I went back up to park city after 5 years. I got instant anxiety walking in to that hospital again. They took x rays and then Metcalf came in to examine it.

  He was able to pop it out in all directions and it was as he called it a 'grade 3' on each direction meaning it was the most severe. We discussed our options. At this point we all agreed that physical therapy was not going to help at this point because it was too loose and there was no stability. And then my worst fear came a reality. There is no more options left except a surgery.

  Because of my previous issues with surgery we feel more confident going into this and fixing it in one surgery instead of two like my right shoulder. We know that I need to be in a brace for 14 weeks instead of 6-8. We know that when I go back to physical therapy after the surgery we won't need to do any kind of range of motion exercises because of my EDS. We know that I do not respond to pain meds so we will take it hour by hour and if I need to stay over to be watched I will.

  I am still recovering and doing rehab from my 3rd hand surgery so thinking about getting another surgery is hard to process. I am still processing the news and trying to figure out how to deal with it.

  Because I will be in a brace for a little over 3 months I have decided to wait until the end of April to get my surgery so that Zach and I can still enjoy our vacation in Seattle. My surgery is scheduled April 26th.

  Although I am terrified of going through this experience again I know I will get through it with my amazing family, friends and boyfriend behind me every step of the way. This is just another battle that I will fight because living with EDS is a constant battle.

EDS has put me in a dark place

  For the most part I try to stay positive about my pain and my life living with EDS. Don't get me wrong I know things could be a lot worse, however the last few months I have been silently struggling living with EDS and I am finally ready to talk about it. 

 Over the last few years I have tried to be so strong. Strong for me and strong for my family. I have been so focused on trying to be okay that I ignored myself when I felt myself slip into a dark place. I like to put a happy face on because I do not want people to pity me or worry about me. I always had the mind set of "it could always be worse, lots of people have worse things than you". And it is SO true. But the problem with that thinking is you are so focused on it could always be worse that you don't stop and take the time to realize it's okay. It's okay that you are feeling overwhelmed. It's okay that you are feeling the way that you feel. Just because people have it worse in the world doesn't mean you do not have the right to be mad about the life you were dealt. 
  
 It is hard to go throughout your life hiding how you really feel. Having EDS and POTS is absolutely terrifying. When I was first diagnosed I was in denial. I met and saw people who had EDS and I never thought I would be like those people. Over the years I have become like or worse than those people. Doctors look at me and say "I know people with EDS but its not this bad, I dont know how to help you at this point". I became the person I was terrified of when I was diagnosed. 

 There's been nights where my lungs suddenly feel like they cant expand and breathing becomes almost impossible to the point that I start to see black spots. There's been nights where my heart becomes irregular and I've passed out. There's been nights where I honestly thought something was so wrong that I was dying. And going through that and pretending like everything is okay is so damaging and exhausting emotionally. 

"What doesn't kill you makes you stronger". I hate this quote. I hate everything about this quote. I used to think about this when I first got diagnosed. I thought it was true. 5 years later I don't think any part of this is true. Yes getting through each day means that I am a strong person but that is because I have no choice. It doesn't always "make you stronger" and it doesn't "build character". Sometimes (most times) suffering is just suffering. 

 I do not feel proud or accomplished by the end of the day. 

  When I first was diagnosed I would say to myself at the end of the night "I am so proud of myself, I made it through another day". No part of me feels that way anymore. I am not proud that I made it another day. I am furious. I am mad that "making it through another day" is even a thing I have to worry about. 

  I do not feel accomplished making it through the day. I am embarrassed. I am embarrassed that it is hard for me to make it through the day. I am embarrassed that I can do absolutely nothing all day and at the end of the day I am still exhausted. 

  I do not feel like my EDS positively affected my character. I feel as though the pain and stress has caused me to disappear and become someone I do not recognize. 

  I am filled with anxiety, pain, frustration, anger, guilt and exhaustion. Its hard to be care free or fun when you feel like you are crumbling and fading away. 

  I have anxiety constantly. My body is unpredictable and I think to myself constantly throughout the day:
-Is this a normal symptom?
-Is this something that is normal or do I need to go to the ER?
-Could I afford to go to the ER?
-Will the doctors in the ER believe me?
-Will they even know what EDS is?
-Will they be able to help me or will they send me home not knowing how to treat me?
-Is this pain going to stop?
-What happens if it doesn't stop?
-What happens when I cant handle the pain anymore?
-How do I explain to loved ones that living is scary? 

  I am filled with frustration. I want to be able to do things that I am physically not able to do. I cant live the life I want to live. 

  I am angry. All of the time. I did not sign up for this. What did I do to deserve this? I am 22, this isn't the life I should be living. I shouldn't be drowning in medical bills constantly. I shouldn't be going to multiple appointments a week. I SHOULDN'T BE FEELING LIKE THIS.

  I am filled with guilt and worry. I am guilty that my family has to take care of me after surgeries and deal with the stress of having a sick kid. I am guilty that I have an amazing boyfriend that got stuck with the sick girl. I worry every second of every day that one day it will be too much and I will lose the love of my life over something I have no control over. 

  I am exhausted. Exhausted from being sick. From being in pain. From working 2 jobs and trying to pay my medical bills. I am exhausted trying to balance a normal life and all of my doctor appointments. 


  EDS has put me in a dark place, but I have no choice but to get up every morning and fight as hard as I can, because if I have learned anything it is you can keep going even when you are convinced that you cant. 

When it comes to EDS pain is unavoidable. It comes with the diagnosis. Every day the pain is different. Some days it's tolerable, some days (most days) it's unimaginable. For me personally I have a lot of nerve, muscle and of course joint pain.

My pain is going to be different from someone else with EDS because not every zebra has the same stripes. Our symptoms are all different and our pain is all different.

I wanted to know what other people with EDS felt daily because if you ask any of us how the pain is, odds are we are going to say "Fine".

I asked them "in one word, describe your pain".

The answers I received...

• Torturous
• Constant 
• Electric 
• Excruciating 
• Relentless 
• Unforgiving 
• Lurking 
• Endless
• Always 
• Permanent 
• Hell
• Overwhelming 
• Cruel 
• Debilitating 
• Continuous 
• Depressing
• Fear
• Expensive 
• Unbearable 

My one word to describe my pain? Terrifying.
It's terrifying knowing your pain will never end.
It's terrifying knowing it is only going to get worse.
It's terrifying having no control over your body.
It's terrifying not knowing what days you'll be able to walk and what days your joints and bones will be crushing each other making it impossible to walk.
It's terrifying asking for help.
It's terrifying to need help.
It's terrifying watching yourself slowly losing function.
It's terrifying when your joints give out.
It's terrifying being in so much pain you don't know how to live one more day.
Everything about this pain in terrifying.

Dating With A Chronic Illness

Something I've wanted to write but have been too afraid to.

I always see articles on Facebook "What it's like to date someone with a chronic illness", "What it's like to date someone with an incurable illness", "What it's like to date someone with chronic pain".

I haven't seen an article saying "What it's like being in a relationship for someone with an incurable illness". So here it is.

I was in my previous relationship when I got diagnosed. We were happy and in love. He dealt with it just fine. Partially I think because we were already in a serious relationship and he felt as though he had no choice. He never complained. He never blamed me. He didn't love me less.

When things didn't work out I worried that I would not find someone that would be understanding and choose to be with me. There's a difference in already being in a committed relationship when getting diagnosed and having to tell a new guy you are dating that you are sick.

My heart hurt. I really didn't think I would ever find someone that would be willing to date me knowing what I had, because why would you? Why would anyone walk into a relationship knowing the other person was sick?

Those were the thoughts going through my head. Iv'e always struggled with my self worth. I don't think I am pretty. I don't think I have a nice body. I am not what guys want. So to put all of those things together and then add EDS and POTS to it, no one should want me.

I met Zach last April. We texted for a while and then he asked to take me to dinner. I really liked him but I was so nervous to start dating again. We went to dinner and the whole time in the back of my mind I was thinking "Act normal. Don't move too fast or something will pop. Don't stand up fast and pass out". Every move I made was carefully thought out. I wanted to appear normal. I even took all of my braces and tape off.

I didn't know what to expect after that. Again, I don't think that highly of myself so part of me wasn't even worried about telling him because I didn't think he would be interested in seeing me again. But he was.

I went over to his house the next night and we watched a movie. I thought I was being as "normal" as possible, until he asked "how are you comfortable sitting like that". BUSTED.

I decided it wasn't fair to keep it from us. So I told him. I definitely down played it. Just told him I had something called EDS that made me really flexible and that sometimes I would pass out. But anyone who knows my boyfriend knows the first thing he did when I left was research the crap out of it.

He took the news like a champ.

I thought the hardest part would be to tell him. Turns out the hardest part is throughout your relationship dealing with all of the guilt and emotions.

He asked me to be his girlfriend. I kept saying no. Part of me wasn't ready for a serious relationship but mostly I felt like if I said yes it would make me a selfish person. I didn't want him to take on the burden of dating me. I didn't want to ruin his life or make it difficult.

I remember being SO nervous to meet his family. In my mind I thought when they found out what I had they would think that there son deserved way better than me. To this day I still think that he does deserve someone so much better.

We have been dating for over a year now and I still struggle daily with feelings of guilt and worry. Since we have started dating I have had 3 surgeries, 1 ER visit and probably 10,000 doctor appointments. There has been multiple times where I have passed out in front of him, dislocated things, cried because I was in so much pain, cancelled plans and even snap at him because I am tired and in pain. Even after all of that he still stayed. He never even thought about walking away. He rubs my muscles when Im sore, he helps me put my joints back in, he goes to doctor appointments, physical therapy and surgeries with me. He lets me be angry. He lets me be frustrated. He holds me when Im scared. He holds me when I cry. He holds me when I can't handle the pain anymore. He takes care of me after surgery. He is constantly asking me how I am feeling. And not once has he ever acted like it was inconvenient to have me in his life.

He gives me no reason to feel the way that I do. I think it is just part of the diagnosis.

I know not every guy is as patient and caring as my boyfriend. It takes a real man to walk into a relationship ready for what the future has in store for me. Not all guys would be able to stay in a relationship like this. I am one of the lucky ones and I wake up every morning SO SO SO grateful that I found him.

Bad Days

Another sleepless night. Another night of tossing and turning, desperately trying to find a comfortable position. Everything hurts. All the way from my toes to my head. Even my skin hurts.

The wrinkles from my bed sheets hurt me when I lay on them. My skin feels bruised. The pillows on my bed aren't strong enough to support my joints.

My body won't regulate temperature. I get cold so I turn my heated blanket on. My feet are like ice. I change into sweats. Then I get too hot. I change into shorts. Now my body is cold again.

I continue to toss around hoping I will find relief. I keep telling to myself "It's just a bad night". Ive said this to myself three nights in a row. "Its just a bad night, tomorrow will be better".

I wake up. Everything hurts. I move. Everything pops and shifts. I close my eyes and take a deep breath, yelling at myself "You have to stand up". "Get up". I stand up. I stay there, waiting for my vision to come back as my heart regulates the change of position. Im tired. I hurt. I want to go back to bed. "It's just a bad day".

I spend my day wishing I was in bed. Wishing I wasn't using all of my energy pretending to be okay. Wishing for a day where I wake up and am excited for the day ahead of me.

I get home after a long day and prepare myself for another long night.

This is my everyday when I have a flare up.

Living with Ehlers Danlos Syndrome is Like...

 One of the hardest things about having EDS is trying to explain your symptoms and the way that your body feels. EDS patients are typically not listened to, believed, diagnosed correctly or treated correctly. Not everyone's symptoms are the same, which is why it makes it so hard to diagnose. 

 One of the best things I have gained from my diagnosis is the amazing people on the online support groups, people from all around the world can help support and educate each other. 

 Personally, for me, EDS feels like I am constantly drowning. It's like when you are in the ocean and a wave knocks you down and before you can get up and catch your breath another wave is already there to knock you back down. 

 It's terrifying knowing that your pain will never go away and it will never get better. You can't trust your own body. It's a constant battle of what I want to do and what I am able to do. It's not just living with the pain. It's living with the shame, the guilt, the depression, the hopelessness, the misunderstanding, the judgement, the embarrassment, the betrayal of your body, and the self hatred. 

I had some of those people write about how EDS feels to them.

Here is how other people describe their EDS...

Tony Michelle Adams "It feels like shredded muscle after I used to do a heavy lift day at boot camp... Only now that pain and weakness is daily, the muscles never seem to heal and I have hundreds of trigger points the size of marbles throughout my body"

Deborah Searle "I watch my husband recovering from the anesthetic he had from a major op the other day and I realized that is what I'm like on a really bad fatigue day. Not able to stay awake can't think forgetting my words etc!"

Susan Newcomb "My daughter describes her full body pain like the throb you feel after you stub your toe."

Jocelyn Joy "After listening to my friends describe being pregnant, I realize I feel pregnant every day."

Lindsey Bertagna "Whoever has the voodoo doll of me is running out of places to stick their pins!"

Brandi Fickling "It feels like I stayed at the club all night drinking and dancing til 4am every night, but I didn't. I watched Netflix and fell asleep at 10."

Holly Sayers "It feels like the day after a marathon you ran and completed, but never trained for.....indefinitely"

Suvi Andersson  "When I lie down it feels like my pelvis breaks down into small particles and spread over the bed. When I need to get up I must first collect all those fragments and ask them to please hold together before I can rise. After a while I hear the distinct pop from my shoulder, dropping into place. I have to sleep on my side which means my shoulders collapse and fall in on eachother, pressing on my throat. Going to bed is not that restful when you need to plan your every position and prop your limbs up. And every time you need to move you have to wake up and rearrange your body. It can take a while to find a position that will work for most body parts. Many nights I can't fall asleep at all."

Stacie Lou "Yesterday is always better than today. My doctor has told me I have the body of a 70 year old...I'm only 21!!"

Jocelyn Joy "It feels like I have miniature lead balls hanging from each individual muscle. It feels like my body is a ball in a pinball machine because I bounce off surfaces all day long. I feel like a social outcast because I cant do things that others can like running and skiing competitive sports or having a drink at a bar in the evening. I feel like an overachiever because I have to work twice as hard to show people I'm not lazy. I feel like a sensitive flower because I have to be so careful that the environment I'm in isn't too loud, or bight, or cold and I have to avoid all kinds of food to not exacerbate my symptoms. No gluten, dairy, sugar, coffee, alcohol, or grains. Pretty soon I'll be living off air and water and Himalayan salt crystals."

Caitlin Bignold "I wake up feeling like I've just walked a marathon"

Joey Killian-Major "It feels like being an invisible hurricane!"

Amanda Kate Forsythe "It feels like trying to wake up after a restless sleep, only to realize that someone has been taking a sledgehammer to your shoulders and hips the entire night."

Lindsay Prososki Lee "I hate the fatigue more than I hate the pain. I feel like I'm only half alive."

Aubrie Williams "You know that tired feeling you have when you wake up at 2AM with the groggy eyes and headache? It's kinda like that all the time. You know the sore muscles you get when you haven't exercised in a long time and you hit it hard at the gym? It's kinda like that all the time. You know when you're sick with the flu and you've been in bed for a week and you feel weak and hot and dizzy when you stand up? It's kinda like that all the time. You know that tired sore feeling after a car accident when all your muscles are screaming from the trauma of being jerked around and you ache all over? It's kinda like that all the time. You know how you feel when you wanted so badly to do something with your friends and something comes up and you hate that you have to cancel? It's kinda like that....all the time."

Michelle Wilkinson "The worst pain EDS causes, is when a loved one doesn't believe you."

Linda Alcock "EDS means our bodies constantly battle themselves so because of the level of pain our bodies fight our energy levels suffer the less energy the more fatigue the more fatigue and pain the harder it is to function or have a good sleep it's a vicious cycle"

Tammy Wild "Like when you go to the gym, and do a stretch and hold it for 30, and feel it burn and pull and psych yourself into keeping going, until you just can't stand the muscle pain anymore, and release. Except you can't ever release."

Meshell Lynn Bergeron "I feel as if I'm drowning in a pool without being saved or suffocating. Just a never ending struggle to survive."

Chloe Downes "Your joints are so fragile it's like walking on noodles,one wrong move can cause lasting damage."

Marianne McNally "feels like I have lost my liberty" 

Johanna Hinch "Like walking through quicksand. The you move, the more you get sucked in."

Emily Rose "Ignorance is almost worse than the pain, for me. When someone is just so cruel to you because it's an invisible illness it really makes you feel much worse about yourself."

Jessica DeLuna "It feels like trying to stand on the sandy ocean floor with waves crashing down on you."

Kim McDougall "I think one of the hardest parts about EDS is that is an invisible illness. People, even family, don't really believe that I can be in pain or exhausted all the time. It must be my fault somehow. Like I don't get enough exercise or I don't eat properly. So I stop complaining about it and that leaves me feeling isolated"

Rebekah Bears "It feels like I'm dying, even though I know I'm not. I'm alive, but I'm no longer living."

Sonja D Simmons Long "Just like the stretch marks from pregnancy and those scars my internal organs are pulling apart. I can feel it happening daily."

The Truth

Everyone who knows me knows that I am a workaholic. The last few months I have felt my health decline. I thought it was just a flare up, I am now accepting the fact that this is my new reality. 

This month is a new change for me. I made the decision, after months of going back and forth, to go part time at Wayfair. This is never something I wanted to do, but I am not physically able to keep up with my "normal" routine anymore. 

Although I know it is the right decision for me, I feel myself becoming the person I told myself I would never be. 

For the longest time I have been too afraid to be honest about how EDS has changed me. But here it goes. 

I am scared to be honest when people ask me how I am doing. I am scared to say "It's getting worse" or "My health is scaring me". People always ask "Are you feeling better?", my automatic response is "Yeah I'm fine"or "Nothing I can't handle". Or sometimes I'll even make jokes to hide my pain. Truth is, no. No, i'm not feeling better. No, i'm not fine. No, taking a day off work did not help me feel better. No, the pain is not something I can always handle. 

Truth is, I am exhausted. I am so tired of fighting the pain. I am tired of feeling and hearing my body pop and shift out of place every time I move. I am tired of putting a brave face on to make those around me feel better. I am tired of all of the doctor appointments. I am tired of limiting myself. I am tired of all of the tape, braces, physical therapy, x rays, MRI's, blood work, EKG's, and surgeries. I am tired of hearing "You are too young to be having this many health issues". I am tired.

I can feel myself breaking. Piece by piece. One body part after another.

I don't get a break. I don't get good days. I don't get relief from the pain. I don't remember what if feels like to walk without pain. I don't remember what it feels like to sleep without difficulty. I don't remember what it feels like to dance without pain. I don't remember what if feels like to be well rested. All I know now is pain.

All I can do at this point is take it one day at a time and hope that in the future someone will find a way to stop this painful illness.