Mayo Clinic Connect
I have just started using this site so this is my first message.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, safetyshield, luckygirl ... see all
Oh, just want to say something and then i will sign off. I gave my phone number to theresa and colleen. So i now can be contacted.
But i need to say one more time that i feel much safer than i did last week. To have our online community care so much and wonder if i was okay was not expected and it has so overwhelmed me with gratitude. I will definitely not do stupid things without checking in with you guys first! Blessings
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I was wondering if we can have any ground rules for this group that go beyond the Mayo connect ground rules. For example can we agree to not attempt or commit suicide while we are engaging people on mayo connect? Can we agree to not self harm like cutting or burning or hurting anybody else while we are talking to people on connect? It’s going to be impossible for me to be in mental health group if I’m going to have to worry about people killing themselves while I’m learning about them on connect. Learning about people makes me emotionally attached and it’s not going to be easy for me to just forget about it if somebody goes and commits suicide or even threatens it or jokes about it. In my opinion we lay people can’t substitute for professional mental health care. I already said that I have a psychologist that I see every week. I already said I have dissociative disorder. There’s just really good reasons why I can’t take ups and downs of worrying about people hurting or killing themselves day by day. I am not a mental health professional. I never made a living in mental health. I’m just a sheep. So if we can’t make this agreement can somebody take me out of this group? I originally signed up for endocrinology. I don’t remember how I got in mental health. But I do know if somebody tags you that you get an email. If you click on the email link you’re transported back to the discussion. I don’t control the emails I get or don’t know how to control them. Thanks.
Hello,Kmhd and rspalding….. I too have peripheral neuropothy,for many years now.. I am told it is thought to be because of spine problems. With so many of us with this, it does seem that there has to be something that can bring us relief. I never know from one day to the next how my feet and hands are going to be at night. That seems to be the worst time. Although, If I forget to take a dose of meds, during the day it can be miserable. There are times I cannot feel my feet on the floor. I have a rolling walker for my spine problems and it helps when I cannot feel my feet. Sometimes, just driving to the store, I am not sure I will be able to walk. SURLEY there is something that can help. I take 800mg of Gabapentin 4 times a day, sometimes 5 times. I have been trying so hard to get the amount between doses longer, and less in mg. I also take Tramadol, I cannot lie down in my bed, and I have to sleep in my recliner. God I wish I could lay down. My feet usually wake me up with feet burning and stabbing bee sting like pains in my leg. I do crafts, paint, jewelry making, play the keyboard. And I have learned that staying busy is crucial. I send you my wish for ……….PEACE AND LOVE….JJ
I understand. I got mine with financing from the mattress store. The adjustable bed frame was an upgrade from the standard bed frame. I put an inexpensive mattress to go with but it really helps to be able to elevate your feet and head separately. It’s really like a medical expense for many people.
Liked by Teresa, Volunteer Mentor, grandmajan
Jjwest, my apologies, i didn’t notice that you already said you have peripheral neuropathy in your post. I reread it this morning and said to myself, “Duh.” I hope you find some relief. I know my nerve pain is the worst at night. Some nights I wanted to cry or worse yet I wanted to scream, out of pain and frustration that I could do nothing about it. The Gabapentin is helping the night pain, but I am beginning to suffer side effects that may mean I have to stop taking it. I don’t know where the doctor will go next. I know I need major surgery to correct my L4, which has slipped out of alignment 7.3 mm. However, they want to put off the surgery until my other simpler surgery on my L5-S1 has completely healed. I am starting physical therapy next week and that should help. Then they will use steroid shots, which I’m not looking forward to, but are much less painful than major surgery will be. My brother had the surgery and he said the pain he had is gone, although his surgeon said he would still have pain, he was just helping him be able to walk. I’m not at that point yet, thankfully. I feel for you and hope you get some relief. Is surgery an option for you?
jjwest, I’ve had four spine surgeries and the best advice I can give is to search out the absolute best back surgeon. I went to the one my primary used for his own surgery, knowing he would pick the best for himself. Insist on an early surgery appt, if it gets too late go home and reschedule. I had an early surgery that ended up taking seven hours and somone was still scheduled after me. I wouldn’t want an exausted surgeon working on my back! It’s your body and your health so do what is best for you, not to accommodats the surgeon’s schedule. Also, don’t put off recommended surgery too long, I know people who regret doing that and then finding out they’re no longer a good candidate for surgery. Good luck!
Please check back in when you wake up. I pray that the Valium won’t cause any damage to you.
Hi Georgette- How was your day? did you happen to start a list of possible safe places- you would feel good in? If I can say- when a person is feeling so worthless and alone- it hurts, and I really mean “Pain”, Dr Edwin Shneidman- from UCLA -in his book ” Suicide As Psychache” talked about all his research around pain within the pain, when someone is really hurting, they tune every thing else out- not because they don’t care-, but they are trying to find a way to stop the Psychache, Another reason to have a safe place to think, reaason with ourselves, pray and keep a journal of our thoughts and successes. If you would think about sharing what your days are like- is there one thing that keeps you from finding peace or an enjoyable few hours? I would respect and love to hear your thoughts. JJAMES
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
maybe you can find some assistance on the PAF website?
Liked by Teresa, Volunteer Mentor
@johnjames Thanks for your post about your fox hole. It doesn’t sound silly at all! A safe place is anywhere that we feel safe (or safer) during a crisis. Thanks for that great insight in finding a safe place even during a war. As I think about it, I realize that we all have our “war-like struggles” and to find that “safe place” is very important. Just a message to the rest of our group, @georgette12 @safetyshield @jimhd @rspaulding @lesbatts @overwhelmed @ihatediabetes @johnhans, please share with the group, if you like, where your “safe place” is. Thanks to you all for your wonderful kindness and support to each other. As I’ve said before, you all really bless me! Teresa
I also talk to the Lord and Father every day but something that has just happened in the last few months is this growth on my tongue.
It is bitter tasting and flaky. I have been to my regular doctor who suggested it was thrush. I took the medication he prescribed to no
avail. He then sent me to a ENT specialist who gave me some kind of medication costing over a $1000. My insurance would not cover
it and with no sure signal from him I decided I would not spend the $1,000. What next? Has anyone out there experienced this?
I am starting to get concerned. I do take other medication for high blood pressure and diabeties. HELP
Thank so much Patti
Liked by Teresa, Volunteer Mentor, brit
@brit Did the ENT give you a diagnosis? At times there have been meds prescribed that I felt were too expensive. What I have done is to call the doctor and explain the situation and asked him if there is another alternative med that would be less expensive. Try that approach and let us know what happens. Keep in touch @brit and let us know how you are doing. Teresa
Sorry to hear about the issues you are having with your tongue. I recommend that you start a new discussion in the Skin Health group here: https://connect.mayoclinic.org/group/skin-conditions/ That way the moderator @kanaazpereira can connect you with other members who may have had this issue.
Liked by Jamie Olson
Thank you so much for your “swifty” reply. I will contact the mayo clinic group and see what they say. Thanks again
Hi @ihatediabetes, There are 3 things in the message above that I would like to address separately:
1. Ground rules about suicide and self-harm
– You said “can we agree to not attempt or commit suicide while we are engaging people on mayo connect? Can we agree to not self harm like cutting or burning or hurting anybody else while we are talking to people on connect?”
– These would be great ground rules. However, as you know, this is a promise that may not be possible to keep. We cannot guarantee that no member will talk about suicide or self-harm in the Mental Health group. If someone does talk about it, I hope that the community can help in its limited way.
2. Lay people vs health care professionals
– You said “In my opinion we lay people can’t substitute for professional mental health care.”
– I totally agree. These discussions are peer-to-peer connections between lay people. The power of connecting with other people who have been there can be incredible powerful for healing, understanding the experience of disease, getting support with personal health goals, advocating for better care and so much more. But the discussions on Connect are not a replacement for professional medical advice, diagnosis or treatment. This is outlined in the Connect Disclaimer: https://connect.mayoclinic.org/disclaimer/
3. Managing your settings and email notifications
You can set your preferences and choose which email notifications you receive from Connect. You can set your preference in you Account Settings: https://connect.mayoclinic.org/account/
If at any time you no longer want to receive notifications from a particular discussion thread, simply click “Unsubscribe” in the bottom of the email. For more tips about following groups and setting notification preferences see this page https://connect.mayoclinic.org/get-started-on-connect/
Thank you ihatediabetes for bringing up these 3 important topics!
Liked by Teresa, Volunteer Mentor, Jim, Volunteer Mentor
A relative of mine was told she had thrush and was treated for over a year. She finally went to another doctor and was told it was cancer. Second opinions are always good. It could not hurt to try a second ENT and see what that doctor says.
@johnhans To get a second opinion from another ENT is a great idea for @brit Thanks for the suggestion!
I am replying to the comment you made about your car accident. That your too had a NDE experience. When I had heart surgery, I was told that the Dr’s. were not sure I would recover, I was in a coma, medication induce, for 4 days. And this seems to be when I had this visitation and was given instruction and be sure to remember that I and others are loved, and that all would be good. Usually when you have heart surgery, the “breathing” tube is taken out almost immediately after recovery, but the Dr’s believed that if they did I would die. I am grateful to still be alive. Although it took some hard work to recover. I was in rehab for 4 weeks. When I went home I still could hardly walk even with a walker, still had trouble speaking sentences. Then I went through Cardio Rehab, which included being wired for heart function and riding a stationary bike. I am now functioning as well as anyone with other health conditions. When I was made aware of the four days I was unconscious, I had thought that I had dreamed it, but then later I knew it was real. No one that I know personally can fully tell anyone exactly how they know. When my husband died, I read books by C.S. Lewis, Elizabeth Kubler Ross , and many, many books and articles about NDE. I wasn’t sure about any of these stories, until it happened to me. This is not the end when we die to this world! And true unconditional LOVE is crucial! so everyone…..PEACE & LOVE…jj
Liked by Teresa, Volunteer Mentor, Jamie Olson, Gail, Alumna Mentor
I Agree, my tongue issue was not diagnosed and turned into cancer.
Johnjames, thanks so much for telling us about the pain specialist . i am praying that you will have more and more strength each day. I did not know that there are service dogs specifically for psych issues. I am going to look that up. My english bulldog serves the purpose for now. I lost my bassette hound last year at the age of 14. Long life for a bassette. My chow mix had also passed 6 months earlier. I got my puppy before gracie died because i knew i wouldn’t do well when she passed. I stayed with my chow, louie, and of course with gracie as i had to make the decision to let each of them go. I still can’t look at their pictures because it is still too traumatic. But louie did live 11 years which is long for his breed.
Oh…i used to work in rehab/hospice/alzeiheimers (wrong spelling there) facilities and we brought in petting zoos for our patients. We actually brought into the building and even up the elevator a llama, goat, pigs and rabbits and all sorts of unusual animals. They sat on the beds (well, not the llama and goat)! And everyone came out of their yukky mental and physical stuff they were dealing with. Even me! I carried a baby pig around all day but, unfortunately, the zoo wouldn’t let me take him home. They found me hiding in a closet with him but they heard his squeeks through the door and found us.
It sounds like you have a loving wife and your comment about not wanting to leave her alone to suffer if you were “not here” is extremely compassionate and sensitive. Those who take their own lives have no idea of the life-long trauma they leave for their loved ones. It sounds like, even though you live with such mental and physical pain, you put your family first, and friends. Please keep us informed as to what is happening with you. You are definitely a role model and i feel encouraged when you share. Blessings.
Sorry this is so late- I have been answering the conversations on page 2, Thank you for such kind words and your trust- I just had surgery on both eyes- -the last surgery was this past Tuesday. But I know I will see better and be able to read long( more time). Yes, as you said ( Dogs- are such a joy and some are smarter than some people by Son told me-I hope he was kidding right) we have a our second Golden, she is family and she thinks the house is really hers- if I could only figure a way for her to pay the mortgage. My Parkinson’s Doctor told me because of Agent Orange the Parkinson’s will progress three times faster- well I didn’t like those numbers, but I know that God is in charge of my Ticket to heaven- so we all have to keep going and support each other and ( ” if I may say-also cry together”)/ JJAMES
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