Good Morning All,
I have Adhesive Arachnoiditis and it's getting pretty severe especially in my legs effecting my ability to walk and lately just loosing control and having my legs give out on me anytime they feel like it. Also it's not just 1 a day but multiple times
Yesterday I was just going out the back door with my husband and one moment they were there and the next oh,oh!! But this time I tried really hard not to get my knee's hurt again I some how or another pushed down with all my heart with my left foot to try and stop I heard and felt a crack and hit the floor anyway. My husband became very concern (just a miny stroke - only kidding) because he has neever seen it happen before he only sees it afterwords when he has to get me back up from the floor Well long story short I had him bring me to do the one really important erand and we went to the ER.
At the ER the admitting nurse and everyone else kept asking the same question "how did it happen" I tried to explain that I am loosing control of my legs and that it is due to a disease of the spine Arachnoiditis and my leg just gave out. You would think I said I had to heads instead. They then both nurse and er doctor asked if I was n meds and of course when I said yes, I take morphine 60 mgs. 3X per day they would stop asking what else and that look of "yeah right drug addict" smurik was there" then I asked if they knew what arachboiditis was and they of course no. I even told them about 1/2 hr after the fall I had taken a pill to help and it was just 1 hr. till I had to take it again and I was still in pain. Long story again short 4 hrs later they finally came in put 2 ace bandages on a set of crutches referred to an orthopedic was told to make an appointment with them today that I had fractured my left ankle and see if the rthopedic wants to put a cast on it.
Kow here is my question - has anyone gone to the ER or ddoctor whom know's not one thing of your disease and how do ou manage it. I really do not want to bring a permission slip with me so they can read up on it, why can they not just look it up on the hospital computer - I really don't expect them to know every one of the rare diseases out there but can they just look and see a short summary so they know that maybe they should send and report the fall to my neurosurgeon and ask if I hurt my back or other parts of my body during the fall.
Sorry for going on so long - I only slept 2 hours last night the meds I rake just takes the edge off PM and I have been working on the dosage. And DAMN MY ANKLE AND FRONT OF MY FOOT HURT!!!
Diane:(
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ER's - I felt like a fool
- By dianes123
- Posted October 8, 2009 at 8:46 am · 5 replies
- In How my disease has changed my life
- Shared with the public
Explore topics in this discussion:
Arthritis Stroke Morphine Pain Rare diseases Septic arthritis Arachnoiditis Stress
5 replies
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- Newest first
- By nanomary
- Posted October 9, 2009 at 11:14 am
- Report post
Diane;
Boy do I know what you are talking about. Last year when i got septic arthritis I went to ER several times because of pain and was treated the same way you were. I got the looks and the questions. It made me feel like I was stupid. Well, I know how I felt and I couldn't tolerate it without pain meds. My PC and the other doc in he office even acted the same way.
I guess when we have a rare illness it is up tp us to educate the medical profession. Sounds kind of backwards doesn't it? They should give us a discount on our bills for advancing their careers. LOL.
Try not to let it upset you too much. I know I really had
a resent for a while. That resent didn't hury anyone but me.
Tell any medical personnel that will listen about your illness. Maybe it will save the next person a lot of pain both physical and emotional.
God bless!
- By dianes123
- Posted October 9, 2009 at 2:24 pm
- Report post
Thanks for the note and I was just really venting bad yesterday, this is starting to get ugly, the stress, the bills, I don't know how much more my husband can stand. We barely spoke in the ER except for him telling me don't touch anything or put my hands next to my face - lot's of people in ER couching up a lung, he's a germaphobe. It's like what we have to deal with isn't engough but add sitting for 4 hrs I think it just pushed him over the hill.
But I think I am going to start a small library book with all the disease I have and all the operations. This way they can understand what is going on and not to jump to conclusions. The meds I take for this thing doesn't even relieve it more or less than 10% and my doctor and I are still working on it! Now put a broken ankle on top and say just use the meds your on and make another appointment with a ortho when the only reason I wenr tio the ER was that I didn't have insurance now that's a joke lol!!!
But remember that we do not need healthcare for everyone!!!
Thanks again
Diane
- By CountItAllJoy
- Posted October 25, 2009 at 2:17 pm
- Report post
Definitely hard, it's discouraging to think that the one place where relief can be found, as we all know ERs should be, can be so cynical.
Is there another hospital that you could try? I know you live in a rural community so not sure if thats an option
- By dianes123
- Posted October 25, 2009 at 3:14 pm
- Report post
They are all pretty much the same, as an adult in these times you half expect it, so I am putting all my illness from there hospital diesease search engine and printing them and keeping them in one envelope. So next time I won't hopefully get those looks.
You probably get them from people too I would expect due to your young age but don't let them get to you we all know I this and other sites that even though you look ok on the outside doesn't mean you fell well on the inside and that the pain isn't real.
Take care and thank you for caring to comment.
Diane
- By CountItAllJoy
- Posted October 25, 2009 at 4:12 pm
- Report post
^Yes I usually have to take ten minutes to convince them I'm anorexic nor am I stressed out. I do fine in school and of course that means I'm a type A personality and bringing this on myself ::)
I haven't had any appointments or ER runs since I was diagnosed so interested as to the reactions I will get now.
Anytime! and you as well
Gentle Hugs,
joy
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