Living with Neuropathy - Welcome to the group

Oh my gracious! I hope they get this all figured for you STAT!! I 'm so sorry!

I have a lot of specialists over the years and also worked as a Medical Assistant for 20 years and coordinated a lot of patient care.

My take away is that we have to be our own advocate and fight like crazy to keep the doctors apprised of our status and ask a lot of questions. Ask for referrals and Diagnostics. They have 2-3 thousands of patients on their panels and even see other patients as well so they can't keep up on everything going on in each of our lives.

It can be exhausting and discouraging but do your homework, be prepared, don't be intimated, make a list of questions.

I am going to send my neurologist my list of questions for my upcoming phone visit and tell her I thought she may like to know ahead of time to make for a more efficient, productive visit. And, if she needs a longer appointment time to keep her on schedule, then I am willing to reschedule if within a reasonable time.

As an MA, I tried to keep my docs on schedule and they appreciated it. The docs are mostly all great but the system fails a lot.

@specialty555, I will keep you in my thoughts and prayers. Keep us posted, we really do care! Warmest wishes, Sunnyflower 😊🙏. @johnbishop @jesfactsmon @lorirenee1

@sunnyflower thank you!!! How do you get the drs to address it asap?? I don't want to be too pushy but I am at the end of my rope. I actually had fallen asleep this afternoon and woke up to hearing my husband telling one of our workers that this is all I do...sleep- really? No I dont!! Then he proceeded to say I have been to so many drs and they don't know what is wrong but I won't let him do anything. I was so upset and sad. I am sure he just wants me fixed so do I. I was so horrified that he would say that to an employee. I want to walk into the drs office tomorrow and just say come on do something- I don't have much time left like this!! Thank you for listening to me. The night time is the worst I can't sleep and then when I do fall asleep and I wake up I feel like I never slept...blessings to you and thank you!!!!

@sunnyflower thank you!!! How do you get the drs to address it asap?? I don't want to be too pushy but I am at the end of my rope. I actually had fallen asleep this afternoon and woke up to hearing my husband telling one of our workers that this is all I do...sleep- really? No I dont!! Then he proceeded to say I have been to so many drs and they don't know what is wrong but I won't let him do anything. I was so upset and sad. I am sure he just wants me fixed so do I. I was so horrified that he would say that to an employee. I want to walk into the drs office tomorrow and just say come on do something- I don't have much time left like this!! Thank you for listening to me. The night time is the worst I can't sleep and then when I do fall asleep and I wake up I feel like I never slept...blessings to you and thank you!!!!

Hello specialty555,

It's harder to get appointments nowadays bc of covid-19. Many support staff, etc., including doctors, are working from home.

Are you able and willing to have a phone visit with a doctor? You can also do video visits as well. I have them even with my nutritionist, physical therapist and other specialists.

Scary at first if you are computer challenged but they do trial runs ahead of time with you and walk you through the process until you feel comfortable. If not video then just do phone.

Be sure to ask if you can be put on the cancelation list to be called to come in sooner should someone cancel.

Better than that, is that the nurses have authority over the doctor's schedule to get you on it sooner than the appointment scheduler does so ask to speak with your doctor's nurse. If you are a new patient and don't have an assigned doctor yet, I would still do this. Tell them how bad you are and plead to be seen ASAP. There are usually a few appointments left open for urgent patients for that day so call first thing in the morning!! SSHhhh!

I am very sad to hear that your husband isn't validating you and has humiliated and hurt you by saying what he did about you sleeping all the time. It's an inconvenience to some family and friends to have an afflicted person in their lives. I think there's a discussion about this kind of thing that I will ask John to direct you to by including him in this post.

I will pray that he will be kind, understanding, patient and helpful and rapidly gain insight into your situation and suffering.

I wish for you, the comfort of God and His peace through Christ which surpasses human understanding (Philippians 4 :7), which is the only thing that gets me through the many fires we all walk through here in this very temporary life.

Many blessings and warmest wishes, Sunnyflower. 🙏😊🌹
@johnbishop Hi John, would you use your resourceful skills, and please direct @specialty555 to the discussion about how some of our family members and friends can treat us bc we're afflicted/suffering? Thx so much!!

@sunnyflower is this the discussion you were wanting @specialty555 to see?

Living with emotionally challenged family: https://connect.mayoclinic.org/discussion/living-with-emotionally-challenged-family/

HI John, I don't think this is the discussion. I don't remember when or in what discussion it was, but the subject talked about the need for family and friends to adjust their expectations of those of us who are afflicted and suffereing, I had talked about my daughters and that they had essentially placed me in the position of having to validate my poor health by printing my list of health conditions for them to see. They had offered to take turns coming to help me every other week. Nothing ever materialized so some time later I inquired about it and one daughter implied the other said they didn't want to enable me. So I hadn't heard from either and to this day we continue to pay for help.

Many others have talked about their spouses lack of insight/empathy/compassion into their plight/s. My take away is that it's an invonvienence for family and friends to have an afflicted/suffering family member and friends too. Friends fear more will be required in that relationship and it's uncomfortable to be around afflicted/suffering people bc it reminds them of their own mortality. Unfortunately they rob themselves b/c we all have so much to offer other human beings.

Hope that helps you find the discussion. It likely began in a discussion about another topic.

Take care and as always, thanks so much for your help. I was trying to not go off topic and redirect the conversation per the request of the monitors in my discussion w/ @specialty555 when she was sharing about her husband.

Hope you both have a blessed day! Sunnyfower

HI John, I don't think this is the discussion. I don't remember when or in what discussion it was, but the subject talked about the need for family and friends to adjust their expectations of those of us who are afflicted and suffereing, I had talked about my daughters and that they had essentially placed me in the position of having to validate my poor health by printing my list of health conditions for them to see. They had offered to take turns coming to help me every other week. Nothing ever materialized so some time later I inquired about it and one daughter implied the other said they didn't want to enable me. So I hadn't heard from either and to this day we continue to pay for help.

Many others have talked about their spouses lack of insight/empathy/compassion into their plight/s. My take away is that it's an invonvienence for family and friends to have an afflicted/suffering family member and friends too. Friends fear more will be required in that relationship and it's uncomfortable to be around afflicted/suffering people bc it reminds them of their own mortality. Unfortunately they rob themselves b/c we all have so much to offer other human beings.

Hope that helps you find the discussion. It likely began in a discussion about another topic.

Take care and as always, thanks so much for your help. I was trying to not go off topic and redirect the conversation per the request of the monitors in my discussion w/ @specialty555 when she was sharing about her husband.

Hope you both have a blessed day! Sunnyfower

@sunnyflower, that would be a great new discussion to start with a descriptive title to make it easy to find. Great sleuthing @johnbishop.

Ok. Let's see if I can start a new discussion! "Relationship & Expectation Adjustments". I think it's already understood that this is in the context of affliction. Just not sure what group to put it in?? Your thoughts? Sunnyflower