scary thought

[bilateral]

Hi everyone,

Does it ever bother any of you that you could have a stroke and that you might not be able to indicate anymore that your pain has got worse or that staff might forget to give the TN meds?

I think somebody here posted something about a woman who had had a stroke and who never got the meds she desperately needed.

I had never considered that possibility before but it could happen, which is a scary thought.

Take care,

Anne

[1Lily]

Anne,
This is a possibility, isn't it? I am now going to get a list of my medications to 2 of my friends, just in case something should happen to my husband as well.
Hope you are well,
Lily

[chasingmytoddlers2]

Sounds like a smart idea Lily.
We are doing our will now and along with that a healthcare power of attorney. I don't see anywhere in the forms for you to add information like that. I believe it is something they ask if you have before major surgery so it would be a good place to have it stated.
I will attach a seperate piece of paper to the HPOA and at least TN & the meds will be listed there for family members to be aware of. Legal or not at least they are there.

Thanks for bringing it up Anne.
Stephanie

[baywatcher]

Good idea to have it in as many places as possible. I don't know about other states but here in Maine no one but relatives or husband/wife is given any information about patients when they're hospitalized. I am not sure that the hospital would take any medical information from them either. This is tough, and since the person nearest to me is not a relative or in the husband category he wouldn't even be allowed into the hospital no matter how serious my condition was. Other than wearing my dogtags all the time and having the information on my medical directive and in my power of attorney I don't know what else to do. I've worried about this.

I think in the past I would have found hospitalization very very difficult without help from my friends. Take nothing for granted has to be our mantra. Ideas, anyone? Nancy

[gene1950]

That may have been me who related that story. The lady was in an advanced stage of alzheimer's. She was taken off tegretol because no one at the facility she was in had ever witnessed her having a seizer. sounds pretty stupid doesn't it?

I followed up on this and talked to the family. They figure the nurses who are the first line of care for these patients but had no access to her medical history second guessed the purpose of the tegretol. They then reported it to a doctor who failed to investigate the purpose of the tegretol. The family was not notified until after her death.

Looking back to a time when my own mother was in a rest home, I was never notified about her medications. I tried to keep track of what she was on but probably would have never caught it if they had removed one of the meds.

The day will come when ANY medical personnel will be able to easily access your records via the internet. Until that day comes everyone of us needs an advocate that can be reached.

It has now taken me 45 minuets to write, correct, and try to think of words here. Dam, I hate tegretol.

[bilateral]

Hi everyone,

I wear a med alert pendant during my waking hours, but I think the idea of ensuring that other people, ie friends and family are aware of our need for the meds is a good one.

At least if others can be our advocates if we ourselves are not able for some reason, then we stand a beter chance of being a given the meds we need.

Having it in various places on paper is a good idea too.

Still, I find it worrying.

Take care,

Anne

[joy]

Y'all are very smart to be on the lookout for things like this that might come up. In my own case, for those of you that don't know me, my list of woes only worsened after the usual fibro, osteoarthritis etc troubles began. My problems heightened in the 90's when I started having TN and meniere's disease problems. I was not able to be my OWN advocate with a pain management doctor at the time I needed too!

I had been to a pain doc for my bad hop and he had put me on a low dose of pain meds until he could give me injections. When I went back, i confessed that I had not weaned myself off the pain meds as he had instructed. I kept the for the "next" time I had my TN flare up big time. He patted me on the arm and assured me no worries, that I would need to be on pain meds for the rest of my life.

Well switch back to the next time I went in for my hip pain. I said I am here this time for hip pain. This went on year after year, at least 6 or so.

It was hte one day that I had to wait so long in a cold room that my PN, oh yes, I have that as well, flared up big time. It caused me to pop up and down and be freaked out in my talking and such. He looked at me like I was a mad woman, and one that was getting up easily as well in his opinion. He questioned some things and promptly dismissed me that day!!

And do you think I had the good sence to recall HIS words to me that day long ago? Well of course not. So we can't even trust ourselves to do what is best for us even on many days. I can see that most people do keep it formost in their minds.

Myself, I've just had a close call again myself. Once I did get on regular pain meds, I seldom have anything that resembles the old time TN pain that I had years ago. Still, it never leaves your mind. For that first throb you get in your teeth, bring it all back to mind for you. But what if you are one of the many people who develop memory troubles? Well that friends is something to think about. We do need to make sure someone will remember the things we may forget.

I don't mean to disrupt discussions, I just know to stay in touch with others at times when things get shakey as you never truly forget how bad it was if you do keep your mental mind in good condition. But who can know for sure these days, I can't know that for sure myself with all the many types of pain I have going on. Take care friends. I am so glad there are forums that this can be discussed. Back when I was diagnosed, personal computer weren't such an everday occurance as it is these days. Thank Heavens for computers and the ability to find facts these days. It's so much better than having to pour over all the books like I had to when my troubles first started.

[dbobsnodgrass]

dear Anne; most everyone knows my story, however; I had 2 ambulances called for me at times I was visiting different friends. The EMTs' started to treat me as a cardiac patient. Profuse sweating, sky high BP. My med alert tag and my friends knowledge, that's how I deal with pain.
My mini stroke about 2 months ago, was completely unknown to me. I fell on my face on Saturday, taking a half an hour to gather the strength to crawl to a chair and be disorientated another 1/2 hour. The same thing happened to me Monday, same crawl with no strength. Fortunately, my VNA for PT, said I looked like hell, and called an ambulance.
You all have good comments, nice thread, Anne! bob