blackbirdsings

Hi Ernie, With being so sick for the past several months I have avoided going out on my own and been very selective about where I go, time of day etc. to try to make it easier. I was SO bruised from where I hit the door going down, not fun. Certainly up there on bad experiences. I find there are lots of mean people out there, that are heartless to us. On the other hand there are some really incredible folks that really help me out, and make going places easier for me. Even if its just carrying something for me, getting me a drink, making the place cooler etc. it really makes a difference. Especially when they realize its not like a cold or something that goes away in a few days. Unless something really happens, this is just how it is. The people that still stay generous are the keepers for sure!

I have a tag that I use all the time because it makes going places easier on me if I am having trouble that day or know that by the time I finish grocery shopping etc. I am going to have a rough time. I fainted in a parking lot and nobody stopped to help me, it was miserable. Thats when the doctor got me a tag. I was really sick in the spring and my family was coming to help me the next day, but I was out of popsicles and managed to get to the grocery store to get some. I hardly had a voice. I parked my car in the spot and this man started yelling at me, despite me having the tag. So I said to him "I'm chronically ill, it's mine." and his jaw just kinda dropped because I sounded so horrible. Than when I got out of the car everything went black and I was able to come back before I hit the ground, holding onto the door. That really shut the man up and he was VERY embaressed by his behavior, especially since he did it in front of his child. Did I mention his wife was in the store shopping because he told me that was her duty and he hung out in the parking lot. Lovely. Another one is I went to a concert and they only let people that had already paid a fortune to park in the garage OR if you have handicapped parking. I am young so it shocks people that I have the tag alot of the time. The man allowing people in told me I couldn't park there. I said "Sir, I have handicapped parking" he looked at me and said "But your not handicapped!" I looked him straigt in the eyes and said "Sir, unfortunatly I am" He was too afraid to ask anything else, and was a bit embarresed. I also told him if he questioned it, I did not mind waiting in my car for him to run a check on it. I got my parking right by the door and was told if I needed any assistance at anytime, they would be more than happy to help me. I get nasty comments from people, people that ignore me sitting drinking gatorade with doors open because I am too weak to get groceries in and nobody in the store would help. Best to just ingnore those comments instead of sinking to the level of the people that make them. Eventhough the comments really do hurt.

Hi, I have POTS and a bunch of other stuff and have been reading here for some time...Finally got a name so I can post. I sent you a message of support. I've been very sick for several months and doctors were not treating me. Being sick has made my fainting, pain, not being able to stand much etc. significantly worse. I am mainly in bed, due to being so sick. They did a cat scan a little over a week ago. It really showed tons of fluid in my sinuses. My face hurts, deep circles and all swollen. I am now on an antibiotic for 2-4 weeks but still feeling horrible. Just wanted to lend support because I am 23, at home being taken care of by my parents. I think you are doing a wonderful job with your daughter. I don't know what I would do without my family to help me out. They make sure I have my meds, food when I can eat, and take me for car rides etc. so I am not always stuck in the house when I am not able to do much. My doctor doesn't want me around crowds of people either right now. Have you looked into NIH? I think they are really good, and that might be an option for Nicole.