Biggest fear

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debbluebird
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Biggest fear

Post by debbluebird »

One of my biggest fears, is having to live in a nursing home where they wouldn't give me my gabapentin and methadone.
Then to top it off I now have breast cancer. How will all of this affect my legs, the treatments, the meds and surgery ?

Polar Bear
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Re: Biggest fear

Post by Polar Bear »

Debs - I'm with you on the fear of having to live in a nursing home and not having my meds given properly. I'm sure if they are prescribed then they would be given but it's the timing of when they are given. Generally speaking - there is the 'nursing home drug round' and then there is 'when we need our meds'.
For example, I need one medication half an hour before breakfast. Another has to be taken half an hour after breakfast. Do you think a nursing home would have the capacity to be this specific while dealing with many patients - I doubt it. But hopefully we are crossing bridges before (if ever) they arise.

I am so sorry that you now have breast cancer and all that this will entail. I don't know how treatments/meds/surgery will affect your rls but would say that at present the stress of this news could be something to keep an eye one regarding rls symptoms.
I hope your cancer is in the very early stages and can be managed with great positivity. I will be thinking of you.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
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Re: Biggest fear

Post by debbluebird »


Rustsmith
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Re: Biggest fear

Post by Rustsmith »

Deb, most of the women in my life have been through breast cancer surgery (wife, mother, mother-in-law, cousin, niece and even my grandfather). The surgery and the post treatment(s) are very specific these days and are tailored to your exact situation. My wife's surgery two years ago was much less difficult on both of us than the bunion surgeries that she had on both of her feet. But she was fortunate to have it found so early that her surgeon said it was the second most difficult that he had done because finding it was so challenging.

None of the meds that she had to take (then or now) would be that much of a problem for RLS. Hopefully your surgery and post-surgical treatments go as smoothly as my wife's did.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Re: Biggest fear

Post by debbluebird »

Thanks Steve

leggo_my_legs
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Re: Biggest fear

Post by leggo_my_legs »

Deb,

I'm so sorry to hear about the breast cancer.

If at some point you had to be in a nursing home, you may be able to get an order to keep medication on your person. I'm not sure, but it's worth a try. I know they do that in hospitals, as in "we're not going to give that to you here, bring it from home of you want it." Also, there are typically ombudsmen/women, appeals processes, etc. I don't think they can just say 'we don't like methadone and we don't want to give it to you' when you have previous medical records indicating that you have been on it.

Whatever you do, if you did have to go to one, do NOT sign an arbitration agreement at admission. Those are not required (unless the law has changed?) and it is not to your advantage to sign it.

debbluebird
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Re: Biggest fear

Post by debbluebird »

Sounds good except I have dementia. Just started taking aricept. I would never be able to remember pills. I make mistakes now. Also staff would steal them anyway. You can't keep anything good in a nursing home.

Update on cancer: I decided on a lumpectomy.
Day surgery scheduled Monday. Two weeks later radiation for 3 to 6 weeks. It will be Mon. through Fri. We will stay at the cancer center. He was confident that I will be ok. No chemo for me. Only 30% need chemo. He said it all changed 5 years ago. Before that they recommended that to everyone. All is good.

ViewsAskew
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Re: Biggest fear

Post by ViewsAskew »

How is the aricept working?

Good news on the cancer treatment - sounds manageable. You are a trooper - not sure I'd be as positive about it as you are! I will use you as my role model if it happens to me (and a 1 in 8 chance, as odds have it for women, slightly higher since my grandmother did).
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Re: Biggest fear

Post by debbluebird »

Too soon to tell about the aricept.
Treating cancer keeps you busy. I think I had at least 3 phone calls today from the hospital. Three tests scheduled for tomorrow.
My type if cancer is called invasive lobular. If you can't feel a mass, then they can't see it on an ultrasound or mammogram. They found a second area with the MRI with IV contrast the other day. They call it a sneaky cancer. If it comes back, I will deal with that.

Polar Bear
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Re: Biggest fear

Post by Polar Bear »

Debs..... Great spirit.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

peanut1
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Re: Biggest fear

Post by peanut1 »

Thanks for keeping us in the loop. Wishing you lots of healing with your cancer treatments. My biggest fear is that I will get a stroke and won't be able to move my legs at all and I will be in 24/7/365 pain without any hope in sight.

debbluebird
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Re: Biggest fear

Post by debbluebird »

peanut1 wrote:
Fri Jul 24, 2020 6:39 pm
Thanks for keeping us in the loop. Wishing you lots of healing with your cancer treatments. My biggest fear is that I will get a stroke and won't be able to move my legs at all and I will be in 24/7/365 pain without any hope in sight.
I totally agree. Being stuck in a bed with legs going crazy and not being able to get up.

debbluebird
Posts: 2160
Joined: Mon May 21, 2012 3:27 pm

Re: Biggest fear

Post by debbluebird »

Polar Bear wrote:
Thu Jul 23, 2020 9:16 pm
Debs..... Great spirit.
Not really.

badnights
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Re: Biggest fear

Post by badnights »

Some homes are good, Deb. My mother is in a good one, the staff seem to be caring and honest. Her neighbors in the next room are a husband and wife. Only the wife has dementia.

Maybe start looking for a good place once the cancer is dealt with, so you can get something decided on before you really need it.

And my heart is with you during all of this.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Biggest fear

Post by debbluebird »

I am moving back to Albuquerque the first part of Oct. My only concern will be, finding a Doctor who will prescribe my methadone. At least I have been able to reduce my dosage. The sleep Doctor I had there before has retired. I won't know if the Doctor I had before who first prescribed the methadone, will take me back as a patient. I will be calling soon.
We have been extremely busy getting ready for the move. This type of activity usually messes with my legs, but so far nothing, thank goodness.
I start radiation Aug 31. At least that will be over soon. I will have to start medication to prevent further cancer. I am concerned about those side effects. I always seem to be sensitive to side effects.

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