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seeking advice on talking with doctors about my care
Posted: Thursday, June 3, 2021 2:07 PM
Joined: 9/12/2013
Posts: 3608

I was moved from Michigan to California so I lost my long time doctor. Out here I went to a clinic with my medical history and became patient of a Nurse Practitioner.

The clinic is adequate for rural health care but the office system is impossible for me to use. They wasted over 3 months trying to schedule an MRI for me because their fax machine was broken. I kept calling and begging to just MAIL IT (leaving messages).

Anyway, I have found Ativan very helpful to prevent escalating anxiety when walking, deep breathing, yoga etc don't work. If I let it go, it builds into a break down and over the years has resulted in shingles. By Michigan doctors never questioned me or treated me like I was "trying to get drugs". My partner sees another doctor at same clinic and he also has cognitive problems and his doctor gives him 30 a month and no problem with refills.

My NP scheduled a walk in visit for end of June. If I keep the appointment, I would like advice on how to allow me to have these medicines on hand as I have in years past.

I have no interest in abusing the drugs, I have one interest = NOT getting more shingles. Without the help to stop cascade of anxiety I have had shingles 3 times since January 1. The hell of that with no pain relief, no help. Now i have post shingles pain in addition to crushing back pain.

It will take me some time to get another doctor and to find out if they are going to help me with pain and anxiety or treat me like a drug abuser.

I write down my issues for any doctor appointment as I never remember what questions or problems I have. None of that has helped. I have quit speaking much since speaking cogently = "pretending to have Alzheimer's".  They think I gave up being able to see and drive, hearing loss, balance problems in addition to memory loss as "attention seeking behavior".  

How to convey this is medicine I need? How to find new doctor who would be willing to trust me?  

What might I be doing to get this kind of response? What can I do better?

Iris L.
Posted: Thursday, June 3, 2021 7:38 PM
Joined: 12/15/2011
Posts: 18513

It's nice to see you again, alz+!  Shingles is awful!

I don't disclose that I have memory or cognitive problems to medical people, even though my records reveal that I am taking medication for memory and cognition.  

Perhaps you can explain just what you explained here, that you want to prevent recurrence of shingles and that the Ativan helps with that.  

Actually, I think it is better to avoid medical professionals unless absolutely necessary.  Last year, due to Covid restrictions, I had only one medical visit.  I did not miss going in. My doctors have refilled my prescriptions without a visit.  But now that the restrictions are lifting, they will probably want to see me in the office.

Why do you need an MRI?  Unless there are unusual changes such as a stroke or possible tumor, what are they looking for?

Does your daughter accompany you to the appointments? It sounds like you need advocate.  

Bring your old bottle of Ativan to show you are not abusing it.  They can count how many are left at the end of the month.

Ask the NP or other medical professional what advice does she have for preventing anxiety causing Shingles.  Put the onus on her to help you prevent shingles.

It may be that the NP is not authorized to prescribe Ativan, which is a benzodiazepine.  You need a medical doctor.

This is all I can think of now.

You have helped me so much.  I tell new members to search for your threads.  I hope you are still enjoying tending to your plans and enjoying your new home.  Let me know how the NP visit goes.  

(((((( alz+ ))))))


Posted: Saturday, June 5, 2021 11:26 AM
Joined: 9/12/2013
Posts: 3608

Iris - you always make sense.

The MRI I already had for a growth on one ovary, the GYN said too risky to remove it and come back in a year. I asked it is solid, could I rip it open doing yoga, walking or swimming. She didn't seem to know, said if I start vomiting or abdomen swelling "go to ER".

Past year + I could not have anyone with me at hospitals or doctor office. The system this clinic has is not working for me, I leave messages and get no response. I have tried explaining to the NP before, have written out what anxiety build up looks like, they just look at me.

I was thinking of telling her I find the clinic's system for seeking help or prescription refills too difficult for me and asking is she knows anyone I might be referred to in this other system - a hospital and medical  company not far from me. They send notes from doctor visits and lab tests to a private online patient section, they answer the phone, they accommodated me through painful exams. I want someone into comfort care, what are odds if I ask if she could refer me to someone more comfortable with treating ALZ that any referral suggests I am drug seeking? I'd say slim.

Yes, when I see her in 3 weeks I will bring all my supplements and meds. Thanks for reminder to do that. I have to manage my colon, shingles and dementia alone the least I expect is the anti viral meds to already have (as in Michigan) so I can start them at first sign but this year they have not refilled them! Inside it feels like abuse. 

You are wise to avoid medical people, and to not mention dementia symptoms. Mine are so obvious now they would think I am on drugs or  drunk or something. When I have cogent days people would say "Yo don't look like you have Alzheimer's to me!" which feels threatening to me.

Appreciate any advice from people on this issue. Do most people have something for anxiety from their doctor on hand? I use it as last resort but in past have really done well stopping a big breakdown by minimum dose early.  

I assume it is me. I don't know how to assess what doctors are thinking or saying.

Because I will have to go alone (daughter lives 4 hours away) I will write out my concerns and hand them to nurse before she comes in. Generally she does not seem to have read them. She was very upset one day when nurse gave me the "Name words beginning with F" test - I have done that one a lot and can imagine a dictionary page where I had more words than anyone they had ever tested before. Ha! They seem to want ALZ to look one way and I still have a chunk of verbal brain fat and happy.

thank you for kind words. love and courage

Iris L.
Posted: Saturday, June 5, 2021 2:04 PM
Joined: 12/15/2011
Posts: 18513

Alz+, I did not realize MRI was for a gynecological issue.  In the rare event that it does turn out to be a tumor, do you want to have surgery and possible chemotherapy? It's good to think about this beforehand so you won't be caught off guard.

I don't use any medications for anxiety.  Occasionally I drink chamomile tea or peppermint tea when my stomach feels upset.  But what I do do, that helps me immensely, is DEEP BREATHING.  This works almost instantly.

Doctors are used to most PWDs, 70 percent of whom have anosognosia.  They come in with a caregiver.  This means they don't have the self-awareness that you have.  That may be why they react to you strangely.  

If I were you, I would not verbalize "Alzheimer's Disease" but talk vaguely of memory problems, if you have to bring it up at all.  I don't know why you would mention it, anyway.  Talk about your primary concern, the shingles and preventing recurrences.  At this point, you are not on a specific treatment regimen for AD, so not mentioning the name will not keep you from a needed treatment, and may have the benefit of better rapport with professionals. 

 Best wishes and stay strong!  


Posted: Monday, June 7, 2021 1:12 PM
Joined: 9/12/2013
Posts: 3608

Iris - my writing here takes me some time so it seems I am able "to pass" if I wanted, but after a couple questions I am responding weirdly and start getting anxious, unable to follow questions etc.

My physical condition is worn down and many mornings I wake up with shaking and hollow feeling in my gut which I think is FEAR. I do deep breathing and if it helps, I don't remember ever having been tense. But there are days when the shaking is going to become something more intense and can escalate into major meltdown. When I have no med to nip it in the bud, like a half of an ativan, it can go like wild fire. That crazed condition is what most people describe when they say how awful later ALZ is.

I am not having the ovarian growth removed and would not treat cancer. My heart is also affected by anxiety and then I feel weak and have severe left sided chest pain. I have been on a heart med that works good for 8 years and this NP does not give me unlimited refills...I have to call over and over. I wish I did not have to speak to anyone again, very few people and situations I talk without draining the "tank" of function.

Today is weird. I made myself walk this morning but began shaking on the walk.  Now I will do a few yoga movements and avoid people. This is when I would use a half Ativan and putter all day. If I can not calm it down with breath and movement it could escalate. Every day I fear coming wildfires, people who  can drive have a different view of things. I fear falling, being "put some where" etc. 

My former husband now caregiver Habib is also declining,  we both feel out time is short and all we ask for is to make this part easier. His doctor at same clinic gives him whatever he needs to be calm through this stage (she is not taking new patients).

Having written what I have here I think I need to ask her for a referral to someone else or maybe just ask the other health care system to give me options and just move on without discussing it. Realize now this anxiety building is over having this visit coming up, knowing I will have to speak to nurse and the NP.

Just having you respond and not be evaluating me has helped a lot.  The shaking thing is a form of being overwhelmed. I had episodes when I was traveling years back and it turned within minutes into vomiting and bowels opening up and shaking for hours or days if not stopped with a med  - it is not being a little uncertain, the heart doctor said it is called a "Panic attack" and also said to use the Ativan at first sign.

so betting on being taken out by heart stopping or kidneys quit working or spine snapping before I ever get to end stages of ALZ. My son helped me get a Real ID set up, just have to go in person to the DMV and once I have it that may calm me down too.

I like living in the trailer park, love my garden of potted plants, like being able to struggle with stuff without being observed or evaluated. Right now the growth is pulling and hurts. Will try yoga now and use hammock for a few hours.

thank you for being here. I forget the board is here...Sounds like you are being very smart about your health care, what you divulge, taking care of yourself. I appreciate your calm responses and kindness!

love and courage

Iris L.
Posted: Tuesday, June 8, 2021 1:32 AM
Joined: 12/15/2011
Posts: 18513

Alz+, it is terrible that you have been allowed to go on feeling this way!  You need to be COMFORTABLE!  The medical profession is not set up to handle patients like us.

Does your daughter have POA?  And have you signed the HIPPA consent so the NP can speak to her about you?  I am thinking that some of your requests could be handled over the telephone or over Zoom by your daughter.  That may not be possible for right now, but for the future.  I do think it is important for you to have an advocate.  At one time, when I felt misunderstood, I hired a geriatric care manager.  She accompanied me to appointments and was a big help.  She was very expensive, however.

I would suggest that you continue with the deep breathing.  Perhaps there is a social worker at the medical office who could assist you in communicating with this NP or in finding a new doctor.  I wish you the Best!