Saturday, May 29, 2010

Negligent blogging here- so here goes my first input

I am the type of person that tries hard not to let people see me in pain but when you have ehlers , you sometimes can not hide it.  It sucks.
But it could be worse.
 ( Yeah, I say that all the time too )
But to be honest - I really hate not having a "normal" lifestyle. 
I also always say " I have Ehlers, it doesn't have me "  but sometimes Ehlers does have me.
Not a day goes by that there isn't pain but some times you just adjust and go on with the day - but sometimes the pain is more than you can handle, or almost more than you can handle.
Debating with yourself on going to ER or the doctor happens often for me.  I hate going in though.  Mostly because the ER doctors/nurses just give me a weird look when I tell them I have " Ehlers Danlos Syndrome" .. yep , and then to top it off while you are laying on their cold cot bed type thing waiting for a shot for a few minutes of relief - another nurse comes in or another doctor and again you have to repeat what you just told the other one.  Not just once or twice but several times and the entire time your pain level is rising even more...... I just need a shot please ... a shot will help this pain.... but nooooooo, they do not get what is wrong so they have to run all these flipping tests that only make me hurt even more.  Rubbing this scanner over my veins in my body to check for clots and then they end up writing " She has a blood disorder".  WHATEVER.
I told them what I have but they put it down as a BLOOD DISORDER..... everyone then is afraid to get too close to me , to give me IV's because the veins just burst and they have to insert it again - over and over - if they had listened - it would have saved them and myself hours of torture - UNNECESSARY torture - but I guess I am not smart enough to know that I have already been diagnosed.
Long story short........ I had another night of full day/night of pure hellish pain.  Sometimes it is so painful that I want to just say ****** it .  I hate being a burden to my family.  I hate that I can't make plans to do anything  even in my own house because I just do not know how I will feel from one second to the next. 
What I hate even more though is  not being believed.  You don't look sick.  Okay, my body is so swollen ( mostly legs) that they feel they are going to split open and it feels like a hammer is constantly pounding at my body but I dont feel any pain,,,,,, right... I'm fine.. I'm just faking.... I mean I'm 47 yrs old .. my kids are grown....... I WANT to work but cant....... so tell me, what reason would I have to want to fake this horrific pain ?

More later.

Thursday, September 17, 2009


Hi everyone,

If you look over to the right hand side - you will see that I've added a hyperlink.. It goes to my Ehlers web site that I created when I first was diagnosed .. It is a long read and there is a table there with some images on it that may not be something you want to view if you have a touchy tummy... it's okay though, you won't see them unless you click inside the table to pull the images up.
I will be adding the info to my blog here and updating when possible.

Hoping you are having a pain free day.
TammyJo aka *TJ*

Wednesday, September 16, 2009


I have decided to set up a new blog for living with Ehlers Danlos Syndrome. This way , it will be an outlet for me and perhaps educational to those that are not aware of this syndrome that can be fatal.

This is a short input for right now as I have some other things to tend to but I figured I could at least take time to get this blog started.

You will be hearing for me more in the near future.

TammyJo aka *TJ*