Ya, I’m sharing this. Wow, sounds so similar but Adrian wasn’t as lucky. He lost his toe because of the wait and I had to bandage the damn thing because the nurses stood outside his room and discussed how “nasty” and “disgusting” my hubby’s toe cavity was. The gangrene had set in and the gasses had built up while waiting for eight hrs in the waiting room and Adrian had gotten sepsis and had to have a P.I.C line inserted into his heart that pumped anti-biotics and fluids.

He spent weeks in the hospital and had to have a home nurse look after him for months. when they came out from the operating room I was sitting beside his mom and dad and I had to tell them to cut the rest of the toe off when they asked because I am his wife. You wanna know how hard that decision was to make in front of his parents? I’m never going back to this hospital again. EVER.

I have lost my faith so much in the medical comunity ever since I have gotten ill.

I just thought my husband was a horrible fluke but having to keep going back for my issues and to have them shrugged off and having them guess at what is wrong with me and telling me that there is nothing they can do for me? This is a hospital….they are supposed to know what is wrong. They are supposed to at least do a simple biopsy or test or something? Ok so here is how my issue started….I have been having right eye twitches and dizzyness like motion sickness and nausea for 2 weeks.

I noticed a hard lump about the size of a quarter with some swelling around it. No pain to touch it located at the base of my skull in behind my ear. I didn’t belive it to be a cyst as I have had many of those and they hurt and are red with swelling. So I thought it might be a swollen Lymph node as I have had dry eyes and a very dry throat and had the other symptoms. So I got to the Triage and I was given #17. We waited almost an hr maybe longer and all of a sudden we heard a nurse say” ok, can I have #18, 19 and 20 please. I looked at her and I said what about my number as I was next according to the red digital box on the celling. She said,”oh they haven’t called 17 yet? I said no and she rudely said well then you can go over there and pointed to the triage desk that we would be next.

Another male nurse came up to the desk and asked us rudely what we were doing here? We told him that we were instructed to go here and he said well you’ll have to go back and Adrian said well a nurse just told us that we could come in and so he said well come in then. Adrian said” ok then”, thank you I will. So hubby wheeled my chair up and I handed him my health card along with my Ehlers Danlos Syndrome card and and he said what is this? I told him it was for my rare genetic disorder and told him what I alway’s say. brief description…yada yada, and he asked me how to spell it. I don’t know why he didn’t just look at the card I just handed him? So I spelled it out.

Then they took my heart pressure with the small cuff….and it didn’t work because it was small…sheesh so she got the large one and she said “up,up,up all the way up. and I looked at her and told her I couldn’t go any higher because my shoulder would dislocate, then she held onto my wrist and proceeded to squish my arm against my side and I said to her”through my teeth” that, that was as against as it was going to get “Ma’am. My upper shoulder then started to pinch sharp because of the manipulation she had done. So He asked me what meds I was on so I placed them all on the counter. He just looked at me wierd. He started writing all the names down and asked me why was I on all these? So I told him, this is for this, this is for this, this is for this and this is for this. We just watched him and then Adrian told him some of the issues I get with the stretchy skin and multiple dislocations and he said “well I guess we all have to have a talent”. I just kinda laughed it off but it hurt. It’s not a talent, it’s a painfull disorder that has taken everything from me.

So then we were directed to another desk when we were called to have our papers entered into the system and to get an ID bracelet and then we were directed to the yellow waiting area.

I waited another hr/1/2 and saw a nurse who I must say was very nice. I told him I could remove my brace and I told him why I have to wear it. and so he felt the lump and I told him I have TMJ because my jaws click and make a loud thunking sound when I move my mouth. So then He told me what DR I would be seeing and then I had to wait another 40 mins. Then I was called and hubby wheeled me in and backed me up so I would face the doc.

The doc came in and Adrian had to use the mens room so He asked why I was there and so I told him and I had my brace on which covers my lump and he only felt the top part and he told me….”oh it’s a cyst.” I told him the side effects that I was having and I told him I could take off my collar so he could see it better and I told him why I wear the collar and he went around the back of me for some reason? and then came around to face me again and I told him that I have TMJ and he said….”oh then it’s TMJ”.

He didn’t even feel the lump or inspect it fully that as soon as I said TMJ….that’s what it was and that he could do nothing for me that it was just muscles pulling and that was it, thank you and said “you can wheel yourself out”, and I told him I couldn’t because my elbows and shoulders would dislocate and he said well how did you get in here? I told him my husband had wheeled me in but that he had to use the mens room. He then said again “maybe you can see your dentist but I can’t do anything for you” and said thank you and just walked away.

I was dumbfounded. Stunned…..whaaa????? Like I said….This hospital sucks and I’m never going back.