‘I Don’t Have a Colon, So I Can’t Have a Colonoscopy.’

posted in: Sicky 76
A doctor’s office in 1960, which fits the feeling, somehow. Image: Wikipedia.

 

A couple months ago, I got a letter from Humana, the company with whom I’ve had an insurance policy since 2004. The letter stated that my individual medical plan would be cancelled as of December 31st, 2017.

No explanation. No apology. Just cancelled. See ya.

This post is not about healthcare policy. I’m not interested in debating about healthcare offered by the government, companies like Humana, or anyone/anything right now. Even if I did, I wouldn’t do it here. And I know — I am 100 percent certain — my beautiful readers are way too classy to spiral into goofy and/or cruel arguments about healthcare policy down in the comments section. I believe such conversations are best had on Facebook.

This post is about healthcare, though. As in, the care a gal gets with her health and how sometimes it’s frustrating in certain small ways.

Because of my cancelled policy — which, by the way, kept me and my family from going bankrupt over the years of so many hospitalizations and surgeries — I have to find all new doctors. None of the doctors who saved my life are in my new network. There’s really no way around it. Either I find an entirely new team who accept my insurance or I keep my doctors and pay completely out of pocket. Paying out of pocket is not something I can do unless I suddenly become a millionaire. I’ll let you know.

Doctors I am currently shopping for include: Anesthesiologist; Gastroenterologist; Family Medicine/General Practitioner; Gynecologist; Psychiatrist. And a phlebotomist, though they’re slightly easier to find.

It’s daunting. I’m haunted by the fact that the new docs don’t know me the way my other doctors at Northwestern have known me for so long. All my records are at Northwestern. For everything. All my docs, until now, were all on the same campus, using phones with the same first six digits. Until now, all my docs knew each other — or at least knew of each other or could get to know each other in the cafeteria or whatever. I feel like I had a medical home and I got evicted. And I didn’t even do anything. I was paying my rent every month. I was doing what I’m supposed to do. I was being responsible.

But this is how it goes, I guess. Whining won’t help. So I’m making appointments, doing my research. I don’t have time for this huge job, but what’s more important than to have a team in place in case/when my body revolts? When you have my health history, getting this stuff in place is important.

It stinks when you meet with someone who definitely won’t work out. It happened recently. It’s happened before, too, this particular thing, but it was harder this time because of my feelings of being in hospital/doctor limbo.

The gal who was entering the stuff into the computer was a nurse practitioner, I think. I’m not totally sure, but she wasn’t the first person who took me into the room to do the pulse-ox and blood pressure stuff. But she wasn’t the M.D. I was about to see, either, so I’m thinking she was a nurse practitioner, which is fine; I’ve worked with and been helped by many.

Unfortunately, after I went through the short version of the long story, this person did the thing that makes me feel bad, small, unseen, and empty. She did the thing that made me feel some hideous blend of despair and anger. After telling her about my j-pouch, my ostomy, my takedown, my second ostomy, my second takedown, my anemia, my fissure, and my fistula, she asked:

“So when was your last colonoscopy?”

My breath caught. I squeezed my eyes shut. I made sure my voice was steady before I used it.

“I … don’t have a colon.”

Pause.

“Okay,” she said. “So …”

“I don’t have a colon,” I said, “so I don’t have colonoscopies. Anymore.”

“Okay, when was your last one, though?”

I’m no medical professional, but this question is irrelevant. As in, it has zero relevance to me, my situation, and my needs. But — if the lady insists — the last colonoscopy I had was the one in 2008, at Mayo Clinic, when I was admitted within five minutes of my arrival; the one they couldn’t complete due to the state of my large intestine being “totally gone on the left side,” suppurating and bleeding, bleeding and in tatters, hours away from bursting open and ending mademoiselle in a rather agonizing and undignified way, thank you very much.

Yes, I’m upset.

Because when you’ve got a doozy of a story like I do, going through it again (and again, and again) is hard. Bad memories come back. I do not use words like “trauma” or “flashback” lightly. When I say I have trauma from the lowest points of my illness story, when I say I have flashbacks when I go through the timeline, I mean it. But it’s 10 times harder when you’re going through it with someone new — because you’ve just lost all of your doctors — and you get through it only find you were not heard or understood. Because that feels like the person who was supposed to be listening doesn’t care. She might! She might care! But it doesn’t feel like it. And when you’re me, alone in a doctor’s office, talking about your belly, feelings are everything. Feelings are in charge.

Asking a girl nine years out from a total colectomy when her last colonoscopy was is like asking an amputee if she’s had any ingrown toenails lately. It’s like asking a blind person to look up at the chart and read the smallest line she can make out.

I don’t have a colon. It was removed. In its place, a bag. With the bag, the end of innocence. Please listen when I tell you these things, doc. Please don’t ask me about the organ they took out of my pelvis and threw into the hazmat bin before I woke up. I don’t have that piece of myself. I don’t know her anymore.

What I do know is that people are just doing their jobs. I know that. I owe my very life to the doctors and nurses who have cared for me. I’ve praised them often here on the ol’ PG. My new team may have the opportunity to save it again, we don’t know. I hope not?

So I forgive the gal with the computer and the long day, I really do. Who knows what was on her mind? And I’ve asked plenty of questions in my own life that showed I wasn’t listening or that I didn’t understand. No one does it right all the time. Not her, not me. Not the people who run insurance companies or governments, either, but I think those people should all try way, way harder.

I just needed to talk about it, I guess.

76 Responses

  1. Janice
    | Reply

    I am so sorry that you have to go through this. Sharing your story is brave and it makes me grateful to be able to read your work.

    • Glenda oliver
      | Reply

      You look so healthy I would never have guessed you have been so sick

  2. Sam Faeth
    | Reply

    I became a fan of yours when I was lesrning to quilt. After decades away from anytnung resembling sewing – yes, I HAVE used a band aid to fix a hem – your videos were accesible and engaging and gave me confidence. I am also a writer. I also suffer from a serious chronic illness. My heart hurt when I read of these additional assaults on the life you are rebuilding with such grace, courage and good humor. I have no words of consolations, except to let you know that so many of us are on your side, cheering you through your last semester of grad school, and the extra challenge of finding a new medical team. Blessings and encouragement coming your way from someone who believes in you.

  3. Tim Latimer
    | Reply

    I would be in mourning if I lost my Dr’s I am so sorry! I hope once the new ones get up to speed you will click with them. It sure makes a difference to have Dr’s that know you and your medical history. Wishing the best for you

  4. Renee Reed
    | Reply

    Mary, I feel for you and so many others who have gone through and who are going through the same thing. My husband is walking in shoes that you walked in years ago. Regardless, I’m proud of you for showing that woman GRACE. That couldn’t have been easy. Grace is huge and the fact that you showed her grace will come back to you at a time when God or someone else shows you grace. Thanks for sharing your story. Quilt on……

  5. Becca G
    | Reply

    I have a shoulder if you need it.

  6. Rita Subrt
    | Reply

    I’m glad to listen to you while you vent. Some people are so tied to filling in all the blanks, they don’t use the brain God gave them. Or their heart.
    Take care. There are plenty of people who care about you.

  7. Linda Gagnon
    | Reply

    Oh Mary, I feel so frustrated for you as I could feel your mental and physical anguish through your words. I wish you the best on your search for your healthcare team. You need a team instead of individual healthcare professionals. Write letters to the heads of hospitals and letters to the editors. Maybe some angel will step up to help you. I wish I could help.

  8. Donnamarie Falk
    | Reply

    Asking for God’s grace to literally rain down on you with comfort and confidence that this will all work out better than you ever dreamed it could. Sending you the best and most beautiful thoughts to lift you up.

  9. Janet
    | Reply

    I hear you sister! Many, many years ago I worked for a clinical laboratory. We processed the tests requested by doctors, health care clinics and nursing homes. At the time we had a chief tech who had no bedside manner. Period. One afternoon the chief tech and I were calling facilities and doctors to alert them that the test results on certain request came back with (to put it in common vernacular) red flags. We used the proper vocabulary when calling, but… … …

    After one particular rough group of calls, where in we got janitorial staff, medical personnel who didn’t really speak English and a few other folks who seemed to have no business doing whatever it was they were doing where they were at, the chief tech turned to me and said that if he collapsed on the street do not send him to one of our clients.

    I came from that innocent group of folks who assumed that doctors had had enough training to know what they were doing. I followed instructions to the letter. You name it. After burying one parent because the doctor was convinced her illness was in her head (not quite, but it was a few years before we had a better idea where it was) and 6 weeks working for the lab, I am no longer willing to take diplomas at face value.

    I get that insurance companies and software developers have regulations and requirements that can often take the brain out of the job, but I often think it would be nice if the people using the system or following the protocol would take a few minutes to stop and think and listen. The patient is not a slab of meat to be poked, prodded and experimented on. I get that the job is not easy on a lot of levels.

    That you managed to get through that encounter with your sanity intact and a positive thought or two says a lot about you. I know this process has not been an easy one, but I hope you find a team that gives you a sense of security and calm and does good for you.

    • Lauren
      | Reply

      Agreed! Write it up once, send it to people who (hopefully) kniw things and can make decisions, and consider taking someone with you to interviews. Whether or not that person takes a fly swatter for gentle guidance of wayward practitioners is open for discussion.

  10. SaraF
    | Reply

    Having been through 4 ostomy surgeries myself, I so understand how much you come to trust those medical personnel who have been lifesavers. I’m so sorry you have to start over again to find a network. Insurance companies should not be allowed to cancel coverage.

  11. Patricia Cole
    | Reply

    Mary, We met when you came to Blaine’s Sewing Center in Rhode Island, I think you should do video explaining what medical procedures you have had and then you could say “Please rewatch from 2:00, I truly feel very bad for all your bad experiences, but you are use to a camera and being on camera and I bet it would be easier just doing it once and having duplicates made. Think about it at least you be repeating your self.

  12. Kathie
    | Reply

    So touched. As a nurse myself, I hate these stories but I live to tell them to health professionals hoping to make people pay attention Computers today in the Med system are greatly dimensioning patient relationship, unintended consequences in changing regulations for digital records l
    Sending prayers your way for all good things Mary.
    I know it was hard to relive it in the story telling but I’m confident it will help others be better care givers, I know it’s given me a reminder.

  13. Ann Conraf
    | Reply

    Thank you for bringing up an issue that is so prominent for all of us with chronic health problems. I have a migraine 24/7, and have been in similar situations trying to explain in the ER to some perfectly functioning medical professional that I am not a drug seeker but just need relief for a moment from crushing pain.
    Our health h care system is being run much re and more by insurance companies. Our patients and doctors deserve better. God bless you Mary.

  14. Yvette
    | Reply

    I’m so sorry you had to go through that. Finding the right MD is so important. I lost my OBGYN one time he was moving on and going into teaching, after 20 yrs of opening my L… to him, how would I ever feel comfortable again, not that position is comfortable. Venting and getting things off your chest helps…….talking with friends. I sincerely hope you find the right team for you. I’m glad you shared your story. I miss you on Love of Quilting, its not the same without you!

  15. Tricia Royal
    | Reply

    I’m sorry you had to deal with all and any of this. Maybe you’ve already found the doctors you need. But I left behind some good docs in Chicago; I’d be happy to share any of their contact information if you need it.

  16. Kathleen
    | Reply

    Hang in there Miss Mary. You are loved by many.

  17. Mary Furber
    | Reply

    I’m so sorry and can relate in a personal way I’ve had 5 spine surgeries and I’m very possessive with my doctors. My husband, who carried our health insurance, died April 30, 2016. The insurance cut off April 30, 2016. But it took them almost 2 months to tell anyone. Luckily I didn’t have anything but office visits to pay out of pocket. And I had about a week to sort through replacement options because you only have 60 days from loss of coverage to get new, or you wait till open enrollment period. Hope you can get stuff straight again.

  18. KC Curtis
    | Reply

    Hi Mary,
    I follow your posts. I admire your quilting. As a nurse, adking that question knowing a person has no colon, was insensitive.. I admire your handling of it.

  19. Jana Davison
    | Reply

    What a lady!!! And such remarkable grace!!!!! I wish you the best.

  20. Beth
    | Reply

    I understand…. completely, mine was due to cancer. My clinic went through oncologists fast, I hated meeting new ones so often. My only high point is I had the same surgeon for nearly all my surgeries.

  21. Nina
    | Reply

    I feel your frustration. I moved 4 yrs ago. Leaving behind a team of Doctors I had been seeing for 25 years. Like you all on the same campus, shared information and took really good care of my and my chronic illness. Finally after 4 yrs, 7 doctors from 4 different clinics I have found Doctors I can work with. However they are from 3 different clinics and I now have become a walking file cabinet to share information from each of them to ensure continunity of care. Good luck and good health.

  22. Julia McGary
    | Reply

    Sad commentary on what our healthcare system has become. I think the person you dealt with was a medical assistant. Most Dr’s and hospitals stopped using RN’s in an attempt to cut costs. While there are many great medical assistants, they don’t have nearly as much training or education. That doesn’t excuse the way you were treated. I hope you will be able to find a new team that will listen!

    • Laura
      | Reply

      That’s what I was thinking, too.

  23. Colleen
    | Reply

    I’m sorry you had that experience. I can relate on a different level. I have experienced the intro of a PA into my drs practice and the shifting of my 3 mos appointments to her. She only has a set group of questions it seems she is allowed to ask. I’m not allowed to tell her about my physical concerns not on her little checklist. I’m a 12 year stage 4 cancer survivor with staples, many cut out internal organs including part of my colon and a post op complication of type 2 diabetes. I have chemo related issues. But I have literally been told we can’t talk about those things I need to make another appointment With her. Who doesnt listen. It is frustrating and a new symptom of the shifting of focus due to insurance issues. I will keep you in my prayers.

  24. Martha
    | Reply

    Ouch. All of it ouch. I am also someone with a medical team and would be lost or dead without them. I wish you the best of luck.

  25. Deborah Heyne
    | Reply

    Mary I am sorry to hear of your current dilemma, my doctor of 36 years retired last December. I was heartbroken. On my final visit I cried like a baby. I wasn’t sure I could go on without him. I am on my second new doctor…he might do. Chin up butter cup, we’re all here for you.

  26. Tracy
    | Reply

    Wow. Just Wow!

    Sending you my extra spoons.

  27. Deborah Rhodes
    | Reply

    I was speaking with my sister just yesterday that it is so wrong that insurance companies run our health care ! Telling us who we can see or not. Changing doctors is very hard

  28. Pam Fairchild
    | Reply

    Oh Mary I’m so sorry you had this experience but you are one classy lady and handled it with such grace. I understand completely. My oncologist is fantastic and we’ve been “together” for 29 years, I beat breast cancer at 29 years old and now have a genetic blood cancer. I’m looking at the end of an era, he hasn’t said anything but he’s getting to retirement age so I see the writing on the wall. Luckily our clinic has several oncologists and nurse practitioners that I’ve dealt with on & off so I’m hoping the transition will be easier than yours. My brother who is HIV lost his Doctor of 14 years to retirement a couple of years ago. And while he likes his new Dr. it’s just not the same. I’m sending prayers that you find a team that you can be comfortable with as fast as possible. It is a sad state though when you can be cancelled as fast as that. Your attitude about it just shows your can do spirit.

  29. Liz Smith FNP
    | Reply

    Oh Mary, I am so very sorry. What a bummer! But here’s the thing: whoever was taking your health history didn’t know her stuff. And that’s not ok. I urge you to send a note to that medical office about your experience. None of want our patients to feel badly, and they need to know what happened to you. The MD certainly doesn’t want to lose patients because one of his staff is an idiot.

    Wishing you all the best —

  30. Elisa
    | Reply

    I’m just blown away to read this (because I was expecting quilting) but thank you for writing about it. You didn’t mention anything about having someone with you as your advocate and scribe. Sadly days come when our health is compromised and our healthcare system further compromises us because of insurance companies. I encourage you and anyone reading this to add a friend or family member to your inner circle of support. Bring them to appointments; have them scribe; have them leave the room when you want privacy…..but have them I have been a liaison of sorts to two elderly women. One a relative whose daughter was proxy. . I’d scribe meetings and make my cellphone available. The other a 95 yr old widow without children who I ended up being caregiver and proxy. A number of health insurance company EOBs challenged but fortunately nothing like losing insurance and needing to replace the entire medical team like your situation. The Important thing though is as our health insurance system crumbles we need advocates/sisters in arms to help keep the ship straight so the patient has the strength to fight the battle. Heath insurers want patients to give up and fold to save the Almighty $$$.

  31. Nelson
    | Reply

    It’s really hard. I haven’t experienced the trauma you have but when you have an autoimmune disease like I do and your new doctor says that your symptoms aren’t related to the condition they’re caused by you realize you’ve got to go on the doctor hunt again. It’s not pleasant. I hope you find the right fit.

  32. Robin Smith
    | Reply

    Hugs

  33. Diane Loehr
    | Reply

    You’ve probably done this, it you can appeal to humane.a. they should provide a reason your insurance was cancelled. Also each state has an insiran e commissioner you can appeal to and they can advocate for you. You need your trusted docs. Good luck.

    • Diane Loehr
      | Reply

      Sorry, typing on my tablet. Lots of typos. You being a writer, probably you will cringe reading.

  34. Michelle
    | Reply

    I am so sorry you have to go through all of this. I have been fortunate to have the same GI since 2001. Don’t know what I’d do if I had to find a new one. I remember my 1st post-colostomy colonoscopy. I jokingly told the pre-procedure nurse to remind my doc that the entry was up front now. She gave me the strangest look.

  35. Mark Smythe
    | Reply

    Mary, your strength is truly humbling!

  36. Judy Sturm
    | Reply

    Mary, I’ve always admired your work with quilts, and the magazine Quilty, when you were writing and managing it, was the BEST! Really, I loved, loved, loved that magazine! But why I, a 76 year old grandmother, am still reading your blog is because of my sweet, struggling granddaughter. She is also in grad school. She is trying to become a physical therapist. It is a difficult program. But it is especially difficult because she has severe Crohn’s disease and no longer has a colon. She lost her colon in her freshman year of college. She was hospitalized 3 times during that first semester and had to drop out of school. She lost her colon during her 3rd hospitalization. It was absolutely shot. Anyway, I feel for you and for my sweet granddaughter. It helps me to hear about your struggles because of her. Hang in there, I hope you do well, and I am happy you are well enough to pursue your dreams. BTW, you write very well!
    Judy Sturm

  37. Judy Forkner
    | Reply

    And to think that I thought insurance companies weren’t allowed to do that anymore–guess I’m just too naive. It’s certainly not fair. I’m so sorry Mary, and wish you the best. You have way too much on your plate!

  38. Carmela Cataudella-Sanzone
    | Reply

    Hi Mary, Although you don’t know me, I’ve been a reader of your blog for a couple of years now and your blog today hit home. Although I’ve had some serious health issues in the last ten years, they are not nearly as serious as when compared to yours. What did hit home for me is when people in the healthcare industry just do their “jobs”. If you are in the healthcare industry you can’t jut do a “job”, you must do your “calling”. Helping people at their worst is a calling and NOT a job. I learned this when I was in the hospital for 16 days and noticed the nurses who being a nurse was just a “job”, and those wonderful Nurses who “nursed” as it was their calling. BIG DIFFERENCE!!!

    I feel for you as medical insurance is a MUST for all of us, but for those that really need it. You may have already done this, but I’ll throw it out anyway, have you contacted your doctor’s offices and ask what insurance they do take? Doctors offices are the experts in what insurance works and what doesn’t. It can’t be they all only take Humana…..or maybe it is in Chicago? Also, have you called Humana to find out why you were cancelled? One of your readers mentioned that they thought that wasn’t allowed anymore.

    I hope that you will quickly get this all sorted out and maybe your local readers might be able to provide some guidance so that you can go back to what you love to do: write, learn, quilt and a host of other things.

    Wish I was local, and I would lend a hand……please let us know how it all turns out. Sending good vibes for you….. Carmela

  39. Karen Stuhlfeier
    | Reply

    I applaud you for sharing your story and I’m sorry that you have to go through this.

  40. Anita Brayton
    | Reply

    Your forgiving the medical person was a light at the end of a very dark tunnel. Thank you.
    What Diane Loehr said.

  41. Sharon
    | Reply

    (((((Hugs)))) I agree that some folks in the medical field should try harder. I got a call last night from a young Indian woman asking to speak with my husband. She wanted to do a phone survey with him about his recent stay in our local hospital. Since he died there, the survey was impossible. It upset me a great deal.

    I hope you can find the perfect medical team to be ready to help you in the future and I hope it happens as quickly as possible.

  42. Jeane Fuller
    | Reply

    Mary, you are an inspiration to me and many others!! Thanks for your story and I’m sending a bunch of hugs today!

  43. Colleen Sain
    | Reply

    A warm bear hug coming your way!

  44. liz hinze
    | Reply

    Mary, I’m an RN and I would bet you money that was an MA that was doing the paperwork.
    In today’s world they are running Dr’s offices and clinics. They’re fine but they have very little education.
    They do what they’re told to do, they ask the questions they are told to. They’re not paid to think…

  45. Jan
    | Reply

    I have “fired “ many doctors because they or their staff members exhibited a lack of knowledge, sensitivity, or simply common sense. Don’t settle for anything less than the right fit for you. Sending best wishes . You continue to inspire me with your spirit and creativity.

  46. Joan
    | Reply

    I don’t usually respond but I have to. Medical coverage is one of my pet peeves . Does anyone else feel that one of our rights has been taken away from us as Americans. We should have the right to choose our medical team and make our medical choices for ourselves, because we are the only ones that knows what is best for us individually, not some big conglomeration. We pay the high prices that are asked of us (another pet peeve) . I am right now going through them denying a medication that has helped me with my diabetes. Not anything of the degree of your situation, but never the less a total frustration. Hope all works out for you Mary. Hang in there. Joan

  47. Claire
    | Reply

    I got a similar letter from Blue Cross Blue Shield of Nebraska, they were abandoning the people who purchased individual policies (as in self employed). However, as a retired nurse practitioner, there is no excuse for the uneducated person who interviewed you. Someone who does not understand what your surgery entailed should be escorted out of a license.

  48. Margaret Scott
    | Reply

    So sorry for the insensitive practioner. Sometimes they just follow the boxes. My last primary care told me my fibromyalgia was all in my head! I too had to get all new doctors this year because my insurance dropped my providers.. So far two of them are excellent. My new rheumatologist seems so much more on top of cutting edge trends than my last one, Have faith that you will find your team. It is daunting but having followed your career I know you will have success in finding your treatment team.

  49. Jan C.
    | Reply

    Hugs from Sacramento.
    I’ve been debating with myself if I should write this, and, as you can see, I decided!
    I went to the hospital ER with severe upper gastric pain. Kaiser, for you who are detail oriented.
    The ER nurse asked all of her history-taking questions, which were entered into the computer right there at the bedside. Included in the question was when was my last BM? It was almost immediately determined that my gaul bladder needed to be removed, and after the imaging department was through with me, I was admitted to the surgical floor.
    Then the admitting nurse arrived with her rolling computer and asked almost the exact questions as the ER nurse. (I know these people were RN’s, because they told me they were. And, by the way, I am a retired RN).
    Over the next two hours I was visited separately by a gaggle of med students, a constellation of surgical residents rotating around their surgeon, an anesthesiologist, and the pre-op nurse–all of whom asked me the SAME questions, especially: when was my last BM.
    All of this, while my pastor and his wife were sitting next to me! No that wasn’t embarrassing at all!
    Not one had read what had been entered into the chart. So, I know that the questions were not asked and entered to improve or help my medical care, but to satisfy the requirements of the national Joint Commission. I know, because I’ve been a question asker, too.
    Now I know how annoying it is, especially when the patient is in severe pain!

  50. Sue Wagenaar
    | Reply

    I am so sorry that you have to find a new network of doctors. That is so difficult considering all you have gone through. I pray that you will find the ones to fit your needs.
    Thank you for sharing your story. It is a gentle reminder to have grace in the midst of such difficult situations.
    I hope your health stays on the positive side during these trying times.

  51. Linda
    | Reply

    I am SO sorry you ran into a fill-out-the-form-at-all-costs medical bureaucrat. It hurts. I know. I had a bilateral mastectomy in 2016 and Gyn techs have asked me TWICE since then when I had my last mammogram. I had to close my eyes and pause, also. Brought it all back. Even more unforgivable, this is the same Dr I was seeing when the cancer was found.

    Good luck assembling a new team.

  52. Kathie Hood
    | Reply

    At the top in Bold 24 point sentences should be an area to list those questions not to ask the patient and the reason why and No one should have to give history when they can bring that history with them to the first appointment at a new clinic. And then the Republicans wonder why ACA was the merciful plan for healthcare permanently.
    Repeating history does give the new person the opportunity to hear something that the previous team had not heard but then in your case they had heard and knew well what to do and keep you in your good health. Angels fly round and protect you from the wax in the ears of your new team.

  53. Carolyn McKee
    | Reply

    My dear Mary, do not minimize the trauma inflicted by this insensitive intake interviewer. Last I heard, in spite of inhuman insurance companies, you get to have feelings and visceral responses to stimuli. I hope you have the resources to see a mental health professional to get you through this incident and the stress of the loss of your health care providers. It is trauma.
    I’m so sorry this is happening to you.

  54. Laura
    | Reply

    So sorry! I am an RN and it seems to me that the person taking your BP, etc. was a Nurses Aid. They get a few months training so really don’t know much about most medical issues. She was insensitive but she probably had no idea what you were talking about and just tuned you out. I really hope you find a team you can work with again. I know it’s a daunting task , Prayers for your success!

  55. […] people, if I don’t laugh, I won’t stop crying about yesterday’s post. Thank you, everyone for listening to me — and to each […]

    • Diane
      | Reply

      I totally get how this feels: I had a hysterectomy in 1982 & still each time I’m scheduled for physical the questionnaire asks “when was your last menstrual period?”. REALLY what does this very old history have to do with me at this point? So I have to explain to the new medical staff that “No” I have never been pregnant because that part of my body is gone. ‘No” I don’t really know if I’m post-menopausal as there is no way to measure what you haven’t had for over 30 years!

    • Madelyn Lenard
      | Reply

      Hello Mary,

      I will be signing up for your blog; I never knew you had one until Abby Glassenberg of While She Naps linked you.

      The old saying is true: everyone has a story. I am so sorry for what you have been through and that you have seen the best as well as the worst of our medical system. It took courage for you to share your story.

      Congratulations on being the new editor of Quiltfolk! What a tremendous honor. You are so deserving of it. You will make an outstanding leader of this timely, excellent publication and will lead it well.

      I absolutely love Quiltfolks; I am a new subscriber and also purchased all the previously released issues. It’s the only publication (I can’t bring myself to call it a “quilt magazine”) I am interested in reading, and now more so with you at its helm.

      Best of luck and all success in your new venture!

  56. Jihan C.
    | Reply

    Noooooo! Don’t go . I told you I’d be keeping up with you… Didn’t think I’d stumble upon this ☹️☹️☹️. Congrats on your new position! I wish you alllll the best, you deserve it!

  57. Jain Barrett
    | Reply

    Mary,
    … “but I think those people should all try way, way harder” …

    Oh YES!
    Thanks for sharing, and trusting us with your story.
    Jain

  58. Sandy
    | Reply

    I was riding with three friends the other day, fairly new friends and don’t remember the topic but we were laughing and joking. One of them said something about being so worried about her colostomy bag. We were all stunned at her bravery. The next gal said she had one after her cancer surgery but it was reversal and she is fine now. I announced that I had my colostomy at 37. Nobody knew. We all looked at the last gal who was doubled up in laughter because she too had gone through it. Four out of four! So now we are the ‘bag ladies’!
    Because

  59. Dionne Matthies-Buban
    | Reply

    My humble opinion….(based on some real experience) She was not a nurse practitioner. They are way to professional and fully-trained for that kind of nonsense. She was probably a medical assistant, or even less trained than that.

  60. Christene
    | Reply

    Hi Mary. I’m a registered nurse, worked in oncology and can only say sometimes we have to fill in the blanks, it’s required. It does seem like she could have put ‘NA’ however. God bless you.

  61. Brenda King
    | Reply

    Dear Mary, reading your experiences with your ex-insurance company, then the unskilled employee, no matter her label- makes me so sorry! You didn’t deserve this, after all you’ve had to deal with health-wise already. I know, repeating your story, time after needless time, is wretched! Insensitivity from your own medical providers is also the pits! In spite of it all, you showed what a classy, intelligent, forgiving, and gentle woman you are. I admire and respect you, in all you’ve done. Loved you on the TV show, the web, and follow your blog religiously. Now look forward to following you in your newest endeavor! You will be great! You are so loved by so many, for good reason, Mary! Please, keep on being you, living, learning, teaching, writing, sharing, growing, and understanding. As a retired RN, and as a patient, I fully understand what you are speaking about. First of all, before any diagnosis, we are human, with human feelings, and needs. Good luck finding a new team! Take good care! Brenda King

  62. Mary Willis
    | Reply

    Hi Mary, Another Mary here and another nurse. A CWOCN. I’m not surprised about your experience. With the electronic medical record that many healthcare systems use, I see people nursing the computer and not the patient. It takes a skilled practitioner to make the patient feel known and understood while clicking away and filling in the *required fields*. Best wishes that you find new providers that look you in the eye and not stare at the computer.

    I’m a member of the Proper Bostonian Quikt Guild. I was sorry to miss meeting you when you visited but I loved the story you wrote about us. I was thrilled that even though I wasn’t at the meeting, I made it into issue 5 of Quiktfolk. My block with my signature popped right out of the page. Congratulations on your new job.

    Mary in Boston.

  63. Sandy
    | Reply

    Oh Dear…I’m going through the same thing myself. My neurosurgeon has stopped taking my insurance. Simply because they refuse to pay him $600 for an office visit. They are willing to pay $150…not a penny more.
    I have no neurosurgeon who takes my insurance within 125 miles of here. So not only will I be getting a new team of doctors, I’ll be traveling and looking for a decent motel room within walking distance of the medical providers. All this because my insurance company cannot pay my doctor and extra $250 a year for my annual checkup with him.

  64. Quilty2
    | Reply

    Mary you are not alone. Always, always remember that. It helps when you feel that.

    The state of medical insurance in these great (sic) United States is horrific. Been there, done that. And, I have a daughter who is Bi-Polar. What a disgrace to her for all the years of paid premiums. They don’t cover, they won’t cover, “quote the rave never more.”

    Be well. Take care of yourself. Grad school is a lot of work and hopefully, pays off. My daughter has her MBA. It wasn’t easy for her, nor the family, but she has it and NO ONE will tell here the honor of this degree is “never more.”

  65. Angie
    | Reply

    As a nursing student I can tell you that most likely that was not a Nurse Practitioner who was taking your history. Also, with your health history you are going to be asked those questions many times as you seek out new professionals to help in your future health care. It is required by the Joint Commission and other regulatory agencies to try as best as possible to compose a complete and thorough health history on everyone to whom care is provided via you the primary source. It is also one of the very first concepts that is taught in nursing school. It is that important. Previous medical records are considered a secondary source. Only you can tell your story completely. Your last colonoscopy was in 2008 and then your colon was removed. That is all she wanted you to say. It wasn’t done to send you off the deep end and cause drama or trauma. Prepare yourself this is probably going to happen a lot to you in the future as you establish new health care partners. As you are a writer you might spend some time composing your health history in a graduate student writing form and bring it with you to each new health care provider. Be thorough and as detailed as possible. You will save yourself a lot of rehashing. Good luck with your future health care choices. May you find doctors and professionals who will fit your needs like a glove.

  66. Anne Crowell
    | Reply

    I can totally relate to your story. My daughter had a total colectomy, illeostomy and takedown surgeries when she was 12 years old. Her colon was also very close to rupturing. We were very lucky we got her to he hospital when we did. She now leads a healthy life thanks to a very skilled surgeon and her j pouch. She is 27 and mother of two 8 month old twin girls. Good luck in your quest to find some health care providers. I know it can be very challenging.

  67. Ophelia Chang, MD
    | Reply

    I think you are a very generous person with a kind heart to be able to say all that and be so forgiving. I’m so sorry that your medical home isn’t to be yours any more. I’m sure they still want you there, but we all have to live with the health care system we’ve created over the last several decades. You weren’t evicted by them, but by our broken system. Much love and hope that you’ll find your new best medical home ever.

  68. Kathy Langford
    | Reply

    Mary,
    On the bright side…you looked absolutely sensational on Fons and Porter this am. You are a great-looking blond.

  69. Timm
    | Reply

    Dealing with medical insurance is mental health hazard! I’ve dealt with so many similar issues dealing with spinal surgeries. I tried to use humor to distract from the annoyances, like a couple well placed googley eyes that surprised the nurse that was putting in my catheter. Bummer that you lost your colon. I checked the organ donor box on my driver’s license, I’ll list you as recipient for my colon and any other needed parts. 😉

  70. Karen
    | Reply

    Mary, this is what happens in offices that don’t employ real “nurses” . This person had to be a med tech . But anyway, glad to see you here… look forward to following this magazine as my SS doesn’t allow me the luxury of buying magazines. Keep up the good work..

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