1. < About Connect: Who, What & Why

Sharing even the embarrassing stuff to recover: Meet @linda82

Jun 12 8:00am | Teresa, Volunteer Mentor | @hopeful33250 | Comments (50)

Member spotlight, @Linda82

TERESA: What brought you to Mayo Clinic Connect?

@linda82: I was searching many sites to find other people to connect with who live with the same condition I have — diverticulitis. I also wanted to find out if surgery for diverticulitis helped other patients and how it changed their lives.

I finally found Mayo Clinic Connect and liked that it was monitored. It was awesome to find a place where you could get so much information from people who live with the same health issue. 

TERESA: What motivates you to take part in Mayo Clinic Connect?

@linda82: Everyday, people share experiences, insights, actual results, and more. I enjoy offering help and support where I can.

TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@linda82: On Mayo Clinic Connect, you can control how much you share. With not having your personal information “out there" you are free to be truly honest. It is awesome how kind everyone is and how open they are with their willingness to share.

TERESA: What support groups do you participate in?

@linda82: I take part in the discussions in the Digestive Health support group.

TERESA: Tell us about a meaningful moment on Mayo Clinic Connect.

@linda82: After the surgery, it was helpful hearing from other members about their recovery experiences. I shared my questions and concerns. When they replied, saying they went through the same healing process, it was a relief!

With digestive issues, some concerns or issues are embarrassing. I posted about feeling pain when sitting down after surgery. It felt like I had a broom up the rectum. A member replied that he understood and reassured me not to worry because that feeling will go away. And it did!

Everyone is so understanding. It is also satisfying when someone comments that I helped them.

TERESA: What surprised you the most about Mayo Clinic Connect?

@linda82: While we may have different health issues at different stages, real connections are made when we share our experiences and discover our similarities. I really like that the discussions are monitored and moderated. 

TERESA: What energizes you, or how do you find balance in your life?

@linda82: I have always enjoyed working out and really depend on physical activity for its mental and health benefits. 

Before I retired, I was on call 24/7 in a very stressful world of logistics. Many times, I would have to drive back to the office in the middle of the night, stay on site for over 12 hours and deal with endless phone calls from customers all over the world. It was hard to take time to eat right and keep moving. There were many times I just wanted to throw my phones out the door!

I had to find some form of balance to survive. I think that is why, now that I am retired, I like gardening in the silence of nature without interruptions. I have created so many different gardens on my land. I enjoy saving seeds from my plants and giving them away to friends and family. I also love to give plants from my gardens to bee keepers who in turn give me honey.

TERESA: Tell us about your favorite pastime or activity.

@linda82: I am a military brat and have lived in many places abroad and in the US. I loved to travel and to go to events with friends. With my stomach issues, all of that went away. I hope to resume traveling again. At the moment, I’m still struggling mentally with the fear and anxiety of another episode happening. It hasn’t, so I’m working on accepting that I might be able to travel again.

TERESA: Do you have a favorite quote, life motto or personal mantra?

@linda82: "If you are going through hell, keep going." ~ unknown, sometimes attributed to General Patten or Sir Winston Churchill

TERESA: What food can you simply not resist? 

@linda82: Anything Italian or Mediterranean. 

TERESA: What do you love about where you live or vacation?

@linda82: I live in a rural area and enjoy the simple quiet life. I look forward to visiting National Parks again.

Member Spotlights feature interviews with fellow Mayo Clinic Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.

See more Member Spotlights.

43 Reactions

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slarson14 | @slarson14 | Jun 19 9:52am
In reply to @pittum "I am interested in any information that I can get on pituataty tumors. Daughter was recently..." + (show)
@pittum

I am interested in any information that I can get on pituataty tumors. Daughter was recently diagnosed with one. She had been having debilitating headaches for 6 months and many other symptoms. She's exhausted , weak. Joint pain heck pain nausea, occ vomiting eye problems. Pituatary tumor 6 x 4 x 2. Doctors are dying this tumor is too small to Cassius these effects. Nothing helps her pain. Mri was done and fd pituatary tumor. Is there any feedback on the above or suggestions about what will help headaches? She had tried tylenol. Excedrin headache,motrin,aleve naproxyn , magnesium. Any suggestions?

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I have a daughter who had a brain tumor.

Find a really good neurologist (physician) who specializes in pain management.

Actually talk to the doctor: ask how he/she became a pain specialist, their educational history. Get at least three opinions until you find two that match.

Let me add: I have been in health care more than 40 years now; both from the provider side and administrative side. In the last 8 years there has been an ever increasing use of PAs and NPs.

When it comes to SERIOUS and complex systems that effect so much in our physiology, which the pituitary IS, then we all need to seek and find an actual physician who has not only a Board Certification in the field (such as Neurology, Endocrinology, etc) but who you will actually SEE.

So often we are shuttled in to see a NP or a PA and neither has PHYSICIAN board certification. The NP (more frequent) is taken at their word. No: you want to actually be face to face with the doc and ask the doc: "So why did you become a neurologist who enjoys pain management so much you made a career of it...".

People become docs for many reasons: you want one with a PASSION for their job; not just a need for a paycheck.

Note: I often use CAPS to emphasize a point, I do not see it as "shouting"

REPLY
zeedee1 | @zeedee1 | Jun 19 10:06am
In reply to @verol65 "@linda82, I wish you the best for a continued recovery. I trust you will be able..." + (show)
@verol65

@linda82, I wish you the best for a continued recovery.

I trust you will be able to travel again. Sixteen mothns ago, when I had my low anterior resection (I no longer have neither a rectum, sigmoid nor mesorectum), I thought it would take at least a year before I'd be able to travel again. Well, not even three month later, I took a 1.5 hour flight for a work week-end. My colleagues accomodated me in a room on my own, so my frequent need to use the bathroom would not bother anybody, and I only had two small accidents noone noticed. Five months after my surgery, I was able to take a trip that implied two 2-hour flights each way. So, don't despair!

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I have non Hodgkin’s lymphoma. After many years of
Going
Dr xomstipation to diarrhea fro meds I think I have a rental prolapse. Bright red blood after movements and sometimes I need to manually push it back. Dealing wit Omani issue haven’t even told
My husband. A little nervous and frustrated’ can I continue to deal
With it
This way without further repercussions. Embarrassing and so much mess and doctors not
Looking forward to
More. Thanks for
You opinions in advance’ I am part
Of
The blood
Cancer support group
First time I am sending
To this group

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 19 11:14am
In reply to @pittum "I am interested in any information that I can get on pituataty tumors. Daughter was recently..." + (show)
@pittum

I am interested in any information that I can get on pituataty tumors. Daughter was recently diagnosed with one. She had been having debilitating headaches for 6 months and many other symptoms. She's exhausted , weak. Joint pain heck pain nausea, occ vomiting eye problems. Pituatary tumor 6 x 4 x 2. Doctors are dying this tumor is too small to Cassius these effects. Nothing helps her pain. Mri was done and fd pituatary tumor. Is there any feedback on the above or suggestions about what will help headaches? She had tried tylenol. Excedrin headache,motrin,aleve naproxyn , magnesium. Any suggestions?

Jump to this post

Hello @pittum, Welcome to Connect. You might find the following discussion helpful:
-- Pituitary tumor symptoms: joint, muscle and body aches
https://connect.mayoclinic.org/discussion/pituitary-tumor-symptoms/
Here is some information on pituitary tumors from Mayo Clinic - https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/symptoms-causes/syc-20350548.

REPLY
linda82 | @linda82 | Jun 19 11:30am
In reply to @verol65 "@linda82, I wish you the best for a continued recovery. I trust you will be able..." + (show)
@verol65

@linda82, I wish you the best for a continued recovery.

I trust you will be able to travel again. Sixteen mothns ago, when I had my low anterior resection (I no longer have neither a rectum, sigmoid nor mesorectum), I thought it would take at least a year before I'd be able to travel again. Well, not even three month later, I took a 1.5 hour flight for a work week-end. My colleagues accomodated me in a room on my own, so my frequent need to use the bathroom would not bother anybody, and I only had two small accidents noone noticed. Five months after my surgery, I was able to take a trip that implied two 2-hour flights each way. So, don't despair!

Jump to this post

That is awesome!
That is so great to have colleagues that understand and gave you the support you needed.
Mine is more mental now. I am trying to get over the anxiety. 🙁

REPLY
royce | @royce | Jun 19 3:25pm
In reply to @pittum "I am interested in any information that I can get on pituataty tumors. Daughter was recently..." + (show)
@pittum

I am interested in any information that I can get on pituataty tumors. Daughter was recently diagnosed with one. She had been having debilitating headaches for 6 months and many other symptoms. She's exhausted , weak. Joint pain heck pain nausea, occ vomiting eye problems. Pituatary tumor 6 x 4 x 2. Doctors are dying this tumor is too small to Cassius these effects. Nothing helps her pain. Mri was done and fd pituatary tumor. Is there any feedback on the above or suggestions about what will help headaches? She had tried tylenol. Excedrin headache,motrin,aleve naproxyn , magnesium. Any suggestions?

Jump to this post

When nothing else works, prescription oxycodone may help according to my wife. It took the pain away and was not habit forming for her. There is no need to suffer. Welcome to Mayo Clinic Forum. I'm sure others who have medical training will pipe in to the conversation.

REPLY
hazel44671 | @hazel44671 | Jun 19 8:12pm

I have found out I have stage 3 kidney failure due to the fact I'm diabetic. I wish they would have caught it or told me at stage 1 or 2. I am waiting for a appointment with a nephrologist in Sept. I have looked up all the foods to avoid and all the ones I can have. The main one I will miss is tomatoes. I love spaghetti and all other meals that use tomatoes. If anyone else is coping with kidney failure I would like to talk. I am 88 and was shooting for 100. My husband is 94 and is helping me as much as he can.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 20 7:08am
In reply to @pittum "I am interested in any information that I can get on pituataty tumors. Daughter was recently..." + (show)
@pittum

I am interested in any information that I can get on pituataty tumors. Daughter was recently diagnosed with one. She had been having debilitating headaches for 6 months and many other symptoms. She's exhausted , weak. Joint pain heck pain nausea, occ vomiting eye problems. Pituatary tumor 6 x 4 x 2. Doctors are dying this tumor is too small to Cassius these effects. Nothing helps her pain. Mri was done and fd pituatary tumor. Is there any feedback on the above or suggestions about what will help headaches? She had tried tylenol. Excedrin headache,motrin,aleve naproxyn , magnesium. Any suggestions?

Jump to this post

@pittum,

Here is a link with posts from Connect members discussing pituitary tumors. I would encourage you to click on the link and read about others who have this health issue. You can also ask questions or make comments. If you click on "Reply" below the post.
--Pituitary tumors
https://connect.mayoclinic.org/search/?search=pituitary+tumors
Here is a Mayo Clinic Newsfeed with more information
--Understanding Pituitary Tumors,
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/understanding-pituitary-tumors/

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 20 7:11am
In reply to @hazel44671 "I have found out I have stage 3 kidney failure due to the fact I'm diabetic...." + (show)
@hazel44671

I have found out I have stage 3 kidney failure due to the fact I'm diabetic. I wish they would have caught it or told me at stage 1 or 2. I am waiting for a appointment with a nephrologist in Sept. I have looked up all the foods to avoid and all the ones I can have. The main one I will miss is tomatoes. I love spaghetti and all other meals that use tomatoes. If anyone else is coping with kidney failure I would like to talk. I am 88 and was shooting for 100. My husband is 94 and is helping me as much as he can.

Jump to this post

Hello @hazel44671,

Welcome to Mayo Connect. Please click on this link, and you will be able to meet others who are discussing kidney failure,
--Kidney Failure
https://connect.mayoclinic.org/search/?search=kidney+failure

REPLY
zeedee1 | @zeedee1 | Jun 20 10:06am

Talk about chemo brain… just read my post about possible rectal prolapse and the letters and words were all jumbled. So embarrassed. Any way what I meant to say is I think I may have partial rectal
Prolapse due to extreme constipation then diarrhea from the meds. Lots of bright red blood with some movements. I actually need to push rectum in at times. Too embarrassed to tell doctors. Being treated for Waldenstroms for about a year with infusions and Brukinsa and dexamethosone. Possibly going on palliative care in a few weeks. Any suggestions? So embarrassing. Haven’t even told husband.

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 20 11:37am
In reply to @hazel44671 "I have found out I have stage 3 kidney failure due to the fact I'm diabetic...." + (show)
@hazel44671

I have found out I have stage 3 kidney failure due to the fact I'm diabetic. I wish they would have caught it or told me at stage 1 or 2. I am waiting for a appointment with a nephrologist in Sept. I have looked up all the foods to avoid and all the ones I can have. The main one I will miss is tomatoes. I love spaghetti and all other meals that use tomatoes. If anyone else is coping with kidney failure I would like to talk. I am 88 and was shooting for 100. My husband is 94 and is helping me as much as he can.

Jump to this post

@hazel44671 Let me add my welcome to Mayo Clinic Connect. The Kidney and Bladder support group has a lot of great information. Here is one of the discussions there, about Stage 3 kidney disease and diet: https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/

Most doctors do not address our kidney disease in the earlier stages, as many of our members will relate to you.

Please feel free to ask me any questions you have, over in the kidney and bladder support group!
Ginger

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