Monday, September 22, 2014

EDS Awareness Apparel!!!!

I started a fundraiser!! You have 7 more days from today to get in the offer! There are 2 male shirts (gray or charcoal) , 2 female shirts (gray or charcoal), and a hoodie (gray only) available for purchase! If we don't reach the minimum, the shirts don't get printed and no one is charged. So reserve yours now!!

Ships to the US, Canada, and International!

TIP!!! If you have friends that are interested also, try and combine the orders to save money on shipping charges!

Help raise awareness for EDS!!!

You can find them here!
http://teespring.com/ehlersdanloszebra



Thank you for helping!
Women's fit in gray
The back of all shirts/ hoodie


Mans fit in charcoal
Hoodie

Sunday, September 21, 2014

Say What Now?! Are You Sure You're A Doctor?

It's about to get real up in here!

Today, let's talk about the shitty doctors out there in the world. I know that if you have anything actually wrong with you more than a common cold, you've met them. You know, the ones that say the dumbest shit.

I'll start. So, a little over a year ago I started seeing a pcp for a long random list of symptoms. They all seemed unrelated and from the first day I met him, he told me, "You're too young to have these problems." Um right. Because young people never have problems. Ass. I know what you're thinking. That isn't so bad. Don't worry. It gets better. And by better, I mean worse. 

At another apt with him, I was getting worse. I walked into his office with tremors and purple hands. Literally, my hands were purple. And ice cold. Even in normal temps. Anyway.. Any guesses to what he told me about that?

My Purple Hand
I'm sure one of you guessed it! "You're just creating problems now. This is all psychological." That's right. He actually told me I was thinking up my symptoms. The symptoms of having my hands turn purple. I must have a veeeerrrrryyyyyyy strong mind. 

That wasn't all though. Oh how I wish I could say it was... Later, after some testing and his decision that I had "too many problems, and I can't fix you", I had one last apt with him to get my annual out of the way before I met my new doctors at Mayo. I had asked him about Ehlers Danlos Syndrome because at this point, I had already been doing all my own research. So I asked him about it. His medical professional response? "I don't know what that is. I may have read about it in medical school, but I don't remember that." So I explained it a little. Then he got mad and yelled, "If I don't know, I don't know!" Then he walked out. And I left. And that was that.  

Oh how I wish that was the only idiot doctor I met. I had to go meet a general surgeon. (Cue booing now. They are the worst) So I get to his office because they found a cyst, possibly precancerous, on the head of my pancreas and they were checking to see if I needed the Whipple. Okay, so I'm there in the room after waiting for over an hour to see him and he went to put on gloves. Gloves to just touch my abdomen. Because you can feel a pancreatic cyst like that.... So I asked him, totally in a normal voice and everything, "Are those latex? I'm allergic to latex." Innocent question, right? I thought so.. But I guess he took it as an insult. Sorry my allergy offends you. So he gets loud and says "Read the box!" So I read it real quick (to myself) and say, "okay, good. Latex free." But that wasn't good enough. He yelled at me again to "READ THE BOX!" So I read everything on the box. Out loud. The last line on the box stated, "Non-sterile."  His insane response? "Oh! So you think I need sterile gloves just to touch you?!" 

Yes, that actually happened. 

I also had a rheumatologist tell me (after he diagnosed me hypermobility syndrome) that getting the genetic test for EDS would be pointless because there is no cure. So there is no need to know.

I really don't think doctors understand what it's like for the patient. It's not just a diagnosis. It's everything. It's a name you can curse. It's something to explain to people when they undoubtedly ask, "What's wrong with you?" It's your sanity. 

I don't know how many times I've wondered if I really am just crazy because I've been dismissed so many times. I don't know how many times I've cried in anger at another doctor telling me they just don't know. Doctors don't understand that the diagnosis is much more than just a label. It's everything to us. 

These don't even take the cake though. The worst part about the hunt for a diagnosis is that doctors feel that they get to pick and choose what they tell you. If I've learned anything, it is to ALWAYS GET YOUR TEST RESULTS!!!!!!! I don't think I can say this enough! ALWAYS GET YOUR TEST RESULTS!!! ALWAYS!!!!!!

Why is that so important you ask? Surely the doctor will tell me what it important, right? Well, maybe they should. But not all of them do! 

I have first hand experience with this. So please just trust me.

I went to the ED because I was having too many neurological deficits and couldn't find a doctor to listen. The ED doc was amazing and ordered me a brain MRI. They admitted me and kept me for a few days running all these tests. A few blood tests came back off, but they sent me home anyway. They said in the brain MRI, they found something (a white matter lesion), but told me "sometimes you need more damage to figure it out. So you have to wait till you have more lesions." So I took that and was thinking MS. I saw another neurologist for a year. Many many many more tests later and still, she couldn't figure out what was wrong with me. 

So I start looking through all my papers because I my insurance changed and I needed yet another neurologist. Well.... Guess what I find in my report from my very FIRST brain MRI... My diagnosis!! 

That is the day I realized I had Chiari and NO ONE decided it was "important" enough to share with me. So, now I'm waiting to see a neurosurgeon so I can have brain surgery... Which scares the hell out of me. Especially since I've met so many below par docs. I definitely don't want one of those crazies performing surgery on my brain. 

Well.. There are more stories of course. It's taken years... years!! And I'm still not completely done yet. So I'm sure there will be more.

It's your turn!! Leave a comment to share your terrible/ crazy/ whacked out doctor stories!! 

Saturday, September 20, 2014

More Blood Work.

Had to go get my blood work drawn this morning. Fasting. Of course. I hate that. I love a cup of coffee in the morning. Anyway. It was only 4 viles of blood today. The most I've had done at once was 12! That was ridiculous. All to look for "what was wrong with me" even though they already the diagnosis at the time. Doctors are stupid. My topic for tomorrow by the way.

My cardiologist is checking for random things... Although my test results will probably be normal because that's my luck. But I see him again on Tuesday. So we shall see.

I know only chronically ill patients will understand what I'm going to say next.

I hope he finds something. Anything really. Just something. Something to validate what I'm feeling. Something that may explain my symptoms. I don't care if its purple elephant disease. Just SOMETHING!!

I am hoping. He was a huge douche bag when I saw the last two times. (More about that tomorrow) But I can't switch. So I'm stuck with him.

Anyway, I've been feeling really shitty today. Sooooo fatigued. Mental and physical. My muscles are exhausted. Its hard to move around today. They are so tired of working, I was standing earlier today and almost collapsed.

Not having a good day. But I did manage to get some dishes done, but not all, and I prepped our dinner for tomorrow. We are having a guest come over for dinner tomorrow, so I'm making my ribs.. They are delicious and my boyfriends favorite thing I make.

So how has your day been? Good day? Rough day? Weak today? Leave a comment below!