Happy national rare disease day zebras and everyone alike. I spent my day at school with a massive migraine and nausea. Clearly not the way I wanted to spend my day but I feel like there is a little bit of irony. Like how else would you spend a day where you are a zebra?
I even ended my day with the heating pad and chamomile tea!
How did you celebrate?
But sometimes I feel like I am. Like when people want to know me they might regret asking what’s wrong.
What’s wrong?
Everything.
I complain about my joints hurting like I am 50 years old. My knees, feet, hip, wrist, back,and neck. My depression and anxiety. Although that’s any age.
Wellyou asked what’s wrong.
People are what’s wrong. I recently had a group of college people I was friends with. Well not close. But like we hung out. Texted and the wanted to know me. Then rather than tell me they don’t want to be my friend. They get me alone and start telling me that because I’m introverted I am insecure. That they talked about me and came to the conclusion i am unhappy with my life. That I am apparently jealous of their boyfriends/significant other because they took me not joining in on their conversation as well me being jealous. Even though all I was doing was sitting on my phone relaxing. They told me I am not confident. The guy made an insinuation that I am a slut. That I need a boyfriend.
I ended up going to the bathroom crying for 10 minutes. It felt like forever.
Of course those people are no longer my friends for obvious reasons above.
You wanted to be my friend but rather than saying I’m too much you bully me and act like we are in middle school. You wanted to know me. The only regret on my part was thinking you deserved to know me.
Sidenote: I am doing better now. I still have classes with them. But I am not there to be friends or baby anyone. I am there to get my associates degree in early Childhood education to help kiddos.
To anyone else who is being bullied or has trouble making friends due to chronic pain. I am here. I will talk. You are not alone in this fight. We are ehlers danlos warriors.
Sometimes I feel like I am looking through a magnifying glass searching for strength to keep going. As of right now I am on break from college. I don’t start back until the 16th but I can already feel the dread of the cold and commuting weighing on my mind.
For me though finding strength to be what the world wants to see is often a battle of whether I can bear to be fake for the sake of others. Oftentimes when making friends in college I find myself being fake or distant towards others as to avoid pity or any of the cliche advice or sayings that come along with admitting that I was born with a genetic condition that won’t ever “get better soon”.
So a solution then? Well I have found that while using my magnifying glass I am able to see there are few people that can see right through me and know something is wrong. Like i am in pain or my hip hurts because of the pressure changes and rain coming in. I realized it is possible to be real and be understood by those who do not deal with such ailments as mine.
I made a friend this year that suffers from a genetic bone disease. Her and I discussed our pains, injuries, and everything. It’s an incredible feeling when you find someone who..well, gets it! She helped me learned to be more trusting of others with my problems. While this is not a guarantee for every person you meet or make friends with. Sometimes people will surprise you when you give them the chance to prove it.
What no one told me about having Ehlers-Danlos Syndrome is that sometimes it’s easier to smile through your pain rather than try explaining what hurts or what’s bothering you.
No one told me that was going to wake up feeling like old person every day. No one told me that pain was going to be a part of my life for the rest of my life everyday.
No one told me I would have to lie about how I feel on a day to day basis because trying to explain how you’re feeling or why you’re feeling a way seems to come back and bite me in the ass.
No one told me that because I am young people who are older than me would pass judgement on me and my issues.
No one told me that I would have to constantly be on the lookout for places to sit because my joints can’t handle standing for longer than a certain period of time.
So story to time and rant time. I am apart of this group on Facebook and lately I’ve been realizing people are really just dragging everyone down. It’s an Ehlers-Danlos support group and at first I got support then people started going at each other for petty things. And then began the “who’s left-handed and has HEDS?” and I can’t quite begin to explain my anger and frustration of this post. Because simple things like being left-handed doesn’t make your EDS more real than someone who’s right-handed or ambidextrous. So why does this frustrate me? I guess it’s because while no one knows what gene specifically is the reason we all have EDS but I don’t think it has anything to do with what hand you write with or what color your eyes are or what your favorite ice cream is.
And then this happened I got surgery on 2/8/17 and last night I realized my splint looks like a butterfly cocoon. So I created this picture and posted it to the group and said how the resemblance is uncanny. And someone was like “that’s funny but your picture will be deleted because it doesn’t follow the rules”. And so at this point I am thinking are they suggesting my splint is too graphic and I go comment back well it’s not graphic or bloody so I can’t see why. Well they said all pictures must be posted in comment section it’s the rule. Well let me tell you I have been apart oft his group not for a long while but when I joined it was never a rule. The only rule we had been if it is a graphic picture like rash or blood or something post it in comment section. So then this morning I see someone had posted a picture and everyone on there was commenting something good and nice and not saying it will be deleted etc.
I just feel that we all have EDS and a lot of other health issues too. So I don’t fit into society already but suggesting that I have to further fit into a mold of what EDS is because of my handedness and also by not posting a picture except in comments I feel that It’s really petty and almost like me having EDS isn’t fitting into this mold of this support group.
We are all in this fight together why make it harder than it has to be to fit into a diagnoses you already have and affects your day-to-day life.
There are certain times or events in your life that you must be like I am putting myself first and that’s it. While I know it’s easier said than done. When it comes to dealing with selfish people in my life who take what is happening to me and turn it into “woe me” for them well let’s just say I tend to lose my temper even with all that deep breathing.
Not everyone understands that you don’t want to sit there and listen to all about them while you’re dealing with say a looming future surgery. For me anytime I say I feel nervous or anxious about my future surgery I get the typical response of them twisting it into something else like “oh she misses me so much” or “I’m so upset about it too” which believe me I might miss you and believe me I know you might also be upset too but that’s not the point of me saying “I’m nervous.”The point of me saying
“I’m nervous about my surgery”, is that I am not sure how to handle my bad nervous energy and I need emotional support. Not the other way around where yes “I’m nervous” but that doesn’t mean I have the mental ability to help support you emotionally. While I know that I am strong because I’ve had six other surgeries that doesn’t mean I want to hear you complain about how you feel about my surgery and make it about yourself.
When someone like me who is on to their seventh surgery I want emotional support from people and not me giving you emotional support.
More importantly the lesson with having a chronic illness is that you have to be okay with putting yourself first emotionally and physically. It’s hard because I’m constantly seeing other’s around me need me but I can’t even really support myself emotionally right now so supporting someone else is such a far fetch idea sometimes. While there is no easy way to put yourself first without risking losing other people in the process if those people are good they will be willing to try to understand your situation and try to stick around and help you.
Only when you feel that yes you can help your friend or family member without hurting yourself is when you know you’re okay. Helping someone can be good but if it stresses you out it can hurt you more than help the other person in the long run.
Helping yourself isn’t being selfish it’s putting your priories in order and realizing that if you help someone else with an issue they are having you may be risking your own health both physically and mentally when really all you can offer that person is just being there for them.
Because sometimes all a person truly needs is to know that you’re there for them and willing to stick around for a long time.
The difference this time I won’t be on crutches! Which is sort of a positive way for me to look at this not so fun situation. I am getting surgery on my wrist because I have a TFCC tear which is the tendon that stabilizes the wrist together. Which means I can’t write for 4 to 6 weeks and typing will be limited. Which is why right now I haven’t really been on posting because my pain is so bad.
Although good news to those who are following me I have this new typing thing that I can speak and it types what I say. So I may still be able to post more often and keep you guys updated as I go through the procedure and then physical therapy.
It isn’t so much hard to tell everyone as much as it is hard to walk into the same place I got some of my other surgeries before. I hate hospitals but I hate the feeling and smells of them.
I thought I got over my last thing where I used to get extremely nauseous from the smell of hand sanitizer except that didn’t last long as it’s back now.
I don’t even know what else to say at this point. So have a good day!
I was supposed to get an EMG but I got a call 49 minutes before the appointment saying the doctor isn’t coming in. So now I’m going into my New Years with like stress, anger, and lack of sleep. I also have more questions than answers about my carpal tunnel and while I’ve waited longer to get answers on things like surgery. I find that having my dominant hand be kind of useless and also going to CCAC and taking some general education classes seems so far away in my reach.
I try not to lose hope but when you’ve already decided not to go away to college due to overwhelming stress, pain, and distance from all my doctors and any hospital. The idea that even commuting to CCAC seems so daunting. Granted I can walk my worry isn’t that my worry is that I won’t be able to write and even do simple tasks that are necessary to pass a college math class seems impossible.
I’m not going to sit here and say yeah I expected 2017 to be my year but I thought I wasn’t going to be struggling this badly. But I won’t give up hope to soon but see there’s yet again a 50/50 chance of getting surgery that’s daunting in and of itself.
So how do I hold my stress from exploding on others? More than often I don’t. I’m no good with stress or depression. While they are always there for me when I don’t want them to be they seem to just show up regardless. But I’ve tried to find outlets like exercising with having a new treadmill and also this blog has been kind of a godsend. Also my dog is really amazing. But even all those together I sometimes still go off on those I love but they understand what I’m feeling and going through.
It’s already hard enough telling people I’ve had 6 orthopedic surgeries consisting of three knees, both feet, and my hip. Let alone the possibility of a new 7th surgery. Ugh 😞😒.
But anyway happy new year!!!
I have this one person in my life while I know they mean well and say they’re joking. When they say she’s just “hangry” I use to be like okay ya maybe i am. But then I got diagnosed with carpal tunnel and I’m under a whole lotta stress with looming unknown for me as far as whether I need surgery to fix it or not. I mean I find myself saying I’m tired because I have nerve pain constantly despite being on gabopentin. I just find that when I am explaining myself I go why do I even have to. 🤔🙄
You aren’t anything that others label you as you are what you want to be. You are in control of that. And while at first I did let it bother me. I soon saw I am what I what to be not what others label me as.
I wish instead of people assuming what I am they’d ask me if I’m okay. Even if I didn’t have carpal tunnel I have Ehlers-Danlos Syndrome and I’ve had six surgeries I am not “hangry” I am not a label. I am Emme survivor of EDS. 🤘🏻💪🏻💪🏻💪🏻
I went to a general orthopedic doctor. She came in and said I know you went to a surgeon already but I also know you’re here for a second opinion so that’s why I’m starting from scratch not off of his notes. I then explain my pain and symptoms and how thy came to be from opening a pill bottle causing a crack and likely what became carpal tunnel syndrome. She tapped my wrist asking if this increases my symptoms of tingling and it did. She tapped on my wrist again a little over and it caused tingling again. She goes “you definitely have carpal tunnel syndrome due to traumatic injury”.
She then gave me a game plan of giving me a better brace,getting an MRI,and getting an EMG. Then go back for a followup visit and come to some sort of decision of whether I need surgery to release pressure on the median nerve.
Having answers and having someone listening to you is the most amazing feeling. Because after having a surgeon tell me I’m not loose in my joints and my pain is obviously just that of a sprain You begin to feel like maybe I am crazy and maybe my pain isn’t real. But then I kept waking up at 1 am leading up to my new appointment. I was sleep deprived and exhausted and in pain.
Now I am on gabopentin/neurotin to help with nerve pain from carpal tunnel syndrome. Good news is it lasts 24 hours. Bad news it makes me hella tired. I mean I sleep through the night but during the day I’m also super tired and drowsy.
Just need to hang in there a little longer.
My Life with Ehlers-Danlos 