Pushing Through...

It has been a while since I have posted...

The last few months have been a struggle. I am still recovering from my third shoulder surgery and am now currently having issues with my hand that has been operated on three times already and my jaw that keeps dislocating and jamming.

I try and push through all of the obstacles that get thrown my way, because that's what living with a chronic illness is. You take it day by day and stay as positive as possible.

Staying positive and not letting my EDS control my life is the one thing I have always focused on. But I am human. I have bad days. I have bad weeks. I get frustrated. I get overwhelmed. I get depressed. I try so hard to live a normal life and some days I am too exhausted to pretend and I shut down.

The last few months I have felt like a shell of a person. My energy is gone. My pain is everywhere. I feel like everything in my body is falling apart. I find myself getting more and more frustrated and angry because I know this pain will never go away.

I have days where I try to remember the last time I could walk without pain, sleep without pain, breathe without pain. I think of all of things I want to do with my life that I wont ever have the option of doing. I feel like the old me is quickly becoming a stranger.


I think a lot of people who have chronic pain try to hind their struggle and their pain. It's easier than expressing to people how terrifying and lonely it is to live in a constant pain that no one understands. 

I want people to know that it is okay to be human. It is okay to have days where you are so angry with the life that you were dealt. Its okay to break down and be sad, as long as you wake up the next day ready to fight.

My Newest Obstacle

Living with EDS is very scary and very frustrating. You really do have to live your life a day at a time because it becomes too overwhelming otherwise. I am currently recovering from my third shoulder surgery. If that wasn't enough stress I am now also dealing with a new problem EDS has caused. 

A little over a week ago I noticed that I couldn't hear very well. It felt like I was underwater. Everything was muffled and my ears felt like they needed to pop. I tried everything to get them to pop. I then started noticing that at night I would hear this really deep vibrating sound or buzzing sound. During the day I would get a high pitched ringing sound and ear pain that would cause me to stop and grab my head because it would hurt so bad. 

Along with the ear pain I also have TMJ so my jaw pops out. Lately it has gotten a lot worse. I had to go to physical therapy to get it popped in. My physical therapist had to put her hand in my mouth to be able to get it to go back in. Now every time I open my mouth it pops, making eating food extremely uncomfortable. 

I did my research and found out that TMJ can cause hearing loss. I was able to get into an ENT to get my ears looked at. They did a hearing test and that came back normal. He asked me to open my mouth and as soon as I did my jaw popped out. He then came to the conclusion that the hearing loss, pain, ringing and the feeling like my ears need to pop was because of my EDS. 

There is a muscle that attaches from your jaw to your ear drum. Because by jaw is so loose and is constantly popping and sliding around it is causing the issues with the hearing because it causes that muscle to spasm. I asked him if I would get the hearing back and if the plugged feeling would go away. He said unfortunately as long as my jaw is the way that it is my hearing will not improve. If my jaw gets worse there is a chance my ears will as well. 

This was a lot of information to take in. I have not fully processed it yet. This is definitely going to cause me to make a lot of changes in my life. I now have to be on a soft food diet. The change in pressure causes constant headaches, nausea and being around loud sounds causes pain and discomfort. 

I took this news really hard. Im not sure how to live with the constant feeling of being underwater. If anyone has any tips let me know! 

Count Down to Surgery

  My shoulder surgery is now in less than 2 weeks. The closer I come to the date the more nervous I feel. When I first found out I had to get surgery I didn't feel nervous. I am so used to getting this news from doctors, having them tell me that it's too far gone to be able to fix it any other way. Now that I have had time to process I keep thinking back about my last 2 shoulder surgeries and how difficult it was to get through. I don't think I am mentally prepared for the pain I am about to go through. Since I do not response to any medications I will be doing this surgery with nothing but an anti inflammatory. No matter how much I try to prepare, there's no way to prepare for the amount of stress my body is about to go through with no relief. Not only was shoulder surgery physically painful but it is also mentally draining. I am a very independent person, a very independent person that is going to be in a brace for 14 weeks. Which means I wont be able to dress, shower, do my hair, tie my shoes and many other things without help. I have a long road ahead of me.

 I want to thank everyone for their love support and help in getting me through these hard times. It truly means so much to me and I will never be able to put into words how appreciative I am. 

Lots of Love
-Maile 

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.