I try not to be too much…

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.

We are all in this fight together

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.

You Have to Learn to Be Okay with Putting Yourself First

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. 

I have to get surgery…again

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!

 

Dealing with Carpal Tunnel Due to Traumatic Injury

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.

How to Prepare for Any Appointment But Especially Ones with Surgeons

Not every doctor is the same. Surgeons are a special breed of people most of them have horrible bedside manners but not all. I learned regardless of their bedside manner they don’t want to be your friend they want to treat you make you better and challenge you at every turn.

My knee surgeon was like that. He wanted to help me but he wanted to challenge me at every turn. I think he did like me by my second knee surgery but he wasn’t the type to show any emotion. I think he knew or I like to think he knew that after he let me go at least my knees would be in their best position possible. If he wasn’t pleased with how I was progressing he’d say do better, try harder, push yourself more. I credit my thick skin from him. I felt even on my own I could continue to challenge myself.

My foot surgeon on the other hand was more of the guy who was like a giant teddy bear except he too wanted make me better. He was like the nicest surgeon I’ve had so far very talkative and would even talk about  his own personal life with me.  One funny story when I was getting my foot surgery he went to go tell my mom that it went well and it’s done. So my sister comes over and he nearly has a heart attack because he thought “wait didn’t I just operate on you??” My sister and I look similar but like I didn’t think it was enough to cause my surgeon to panick.

My last surgeon was my hip one. He was the soft spoken but thoughtful and methodical kind of guy. He would often sit in the room and think and come to some sort of conclusion or plan for what’s next for me. I realized due to my EDS I confused him a lot of the time. I mean he went in to my procedure expecting a labrum tear and realize my hip was actually really unstable and essentially coming apart which was causing my instability and pain.

Basically each surgeon taught me how to handle any doctor to help me. You have to go in expecting they don’t care and have your weapons ready have your questions ready, your concerns ready, your worries ready. You are your best advocate. You ink your body so well that you went to a doctor because you knew you couldn’t fix it and something is obviously very wrong. Just be calm, cool, and collected.

 

 

Sometimes You Need to Treat Yourself

Dealing with thumb pain and wearing a brace 24/7 especially on your dominant hand. For me I enjoy painting my nails and with not being able to grasp anything with your thumb then painting your nails is out of the question.

Go get a manicure!! I mean I would have naturally chose to save money and ask my sister to do them but she isn’t home so next best thing is going to a salon. I even got gel done so that It’d last longer due to my constant and immense amount of pain and tingling in my thumb and now pain in my wrist.

But what I mean that when having an invisible illness that tires you and affects your joints it can be hard to tell yourself you deserve anything when you feel like crap. Even if it’s not getting a manicure, buy yourself a new shirt, fuzzy socks, sweater, Christmas decoration, or anything that you feel makes you happy. And if you don’t really want to spend on yourself and if you have an amazing mom who does literally everything for her buy her something.

And if not then watch movies you wanna and get a pizza and some ice cream. And get your heated blanket and chill out and treat not only yourself but your joints.

Wait I paid $40 for what…

Having your hopes up only for a doctor to not validate your pain and worries. Well that’s the absolute worse. Now I see that not every doctor is understanding  of what Ehlers-Danlos really means. I mean I got an x-ray. Nothing wrong there which is good. But the doctor spent a whole 2 minutes with me. To basically say I’m not lax in my thumb. Even though I’m like I am because I have Ehlers-Danlos. Not everyone is able to push their thumb down to their wrist believe me I’ve proved to people by doing that and seeing them try and then fail.

So now I’m apparently not lax in my hand joints except I am. And it’s “just a sprain” and I should ice it and wear a brace and come back in a month if it’s not better. Even though I’ve been doing just that icing and wearing a brace already so like now what????

 

I’m like a kid the night before Christmas except it’s the night before seeing a new doctor for a new pain

Believe me when I say I hate having injuries and there isn’t anything exciting about having a bummed thumb on your dominant hand. For me It began with me doing  one of my unusual habits of stretching my thumbs backwards. And after that is when pain began and to be honest I basically convinced myself it was a sprain because I saw the swelling. So I go out that weekend and get myself one of those braces out of boxes. Then I go to open something with the brace on of course and something cracks. And it wasn’t one of those pressure relieving cracks it was more of those horrible cracks that are clearly no good. So then the pain has been at a constant 10 since then. Nothing helps. Pain medicine? Tried that. Nope. Icing it? Tried that too and nope. Then when just when I think things can’t get any worse I get the tingling in the tip of my thumb in addition to extreme pain and some swelling. It seems to me that when I hurt myself I do an amazingly good job of it.

So on this website that’s like a blog for people with rare and common illnesses can  post with their issues and questions. So I post how I have tingling in the tip of my thumb and I’m kinda freaked. Someone says ‘you need to get that checked out it might be nerve damage.’ So then I go from kinda freaked to FULL FREAK OUT MODE. I mean I look up nerve damage and who the hell wouldn’t have been in full freak out mode.

Now today is the day I am going to see the hand surgeon. I feel bad for being excited but like It’ll make me feel like I’m not crazy. And maybe he can help me better than a cheap thumb brace from CVS can.

https://www.inspire.com/

With that being said here is the website I stumbled upon in my daily worthless time wasted searching cute dogs on the internet.

Some tips I have for dealing with pain 24/7 this winter time

I don’t know about you but when winter comes my joints make me feel horrible and I feel all stiff all the time. 

-So first tip I have is buy yourself a heated blanket I got one from Santa and oh my gosh it’s so fabulous. All my joints sing out thank you to me while I have it on. Well not really but you’ll be glad you got one of those especially if you are outside for any extended period of time like for me I have to walk my dog and I come straight home put it on and ah yes relief. The heated blanket I got is BIDDEFORD Blanket. I got if from Kohls and I got the twin size (because it was cheaper). I’m sure you can find some on amazon or any department store really. 

http://www.kohls.com/product/prd-2030087/biddeford-plush-heated-electric-blanket.jsp?color=Taupe

https://www.amazon.com/Biddeford-4462-9062119-316-Electric-MicroPlush-50-Inch/dp/B018OA7KV4/ref=sr_1_1?s=bedbath&ie=UTF8&qid=1481387191&sr=1-1&keywords=heated+blanket&refinements=p_89%3ABiddeford

https://www.amazon.com/Biddeford-4493-9062183-902-Electric-50-Inch-62-Inch/dp/B01L0CDDOQ/ref=sr_1_5?s=bedbath&ie=UTF8&qid=1481387191&sr=1-5&keywords=heated+blanket&refinements=p_89%3ABiddeford

-I also would recommend a heating pad. They’re great for back pain and if you just need to relax. They are also good for neck pain if you’re like me and always get a stiff and sore neck because my head is so heavy from holding worthless information about dogs, chocolate, and movies. Just kidding..well sort of. Anyway as of right now the heating pad I have is one of those cheap ones you get from the drug store which aren’t terrible but aren’t like worth any sort of recommendations. Again I’d probably look to amazon to see some heating pads. Also look for ones that have good reviews because you want one that will last you and do exactly what you want it to do. 

https://www.amazon.com/Sunbeam-X-Long-Renue-Shoulder-Heating/dp/B017HZREIQ/ref=sr_1_6?s=bedbath&ie=UTF8&qid=1481387975&sr=1-6&keywords=heating+pad

-I also recommend getting both slippers for wearing around the house so you don’t fall. Or those slipper socks with sticky things on the bottom. Below are the slippers I have they have good support and are super comfy and cute. 🙂 I also have these slipper socks they are super fluffy on the inside and have little sticky dots on the bottom to keep you from falling. 

http://www.kohls.com/product/prd-2598869/sonoma-good-for-life-womens-knit-clog-slippers.jsp?color=Tan

http://www.kohls.com/product/prd-2636282/womens-so-striped-slipper-socks.jsp?color=Black