Being Heard

Life has been crazy busy, which I take to mean that life can be full, even with autoimmune arthritis.  Despite not being a fan of CAM, I highly recommend dietary changes.  Unfortunately, I cannot go into detail at this time. I promise I’ll write more about what I’ve learned one of these days.  Crazy busy…

We interrupt this sporadically updated blog for personal minutia.

We might be closer to getting my mom a rheumatology referral.  She’s been asking for years, and the NP’s she’s seen have been condescending, rude, dismissive…  (the MD was fired).  Every time she went to the primary care clinic, the last person she saw was gone and there was a new NP to not listen to what my mom had to say.  She’s been quite frustrated, and I’ve wondered why she didn’t go find a new doctor to actually listen to her.  Apparently there aren’t very many MD’s taking medicare.

Unfortunately, the road to finally getting someone to listen has been pretty rocky. A few weeks ago, mom sent me a text:


She did not actually need help throwing up. She was doing that on her own quite well. I knew she needed help, so dropped everything and raced to her house.  She has never sent a message like this before. She tends to be one of those, “Leave me alone; I’m fine” kind of people.

After reaching her house in record time, I dug out the spare key and let myself in. I’d never seen her that sick.  She’d been too busy throwing up to take her insulin.  Oops.  Not a good sign.  I asked various questions and she sometimes made sense and sometimes didn’t.  Not a good sign.  Suggesting, “I think you need to see a doctor,” met with significant resistance.  She just didn’t want to get out of bed.

Finally I asked what/when her last glucose reading was.  She’d been so sick she hadn’t checked her glucose levels all day, just laid in bed and slept and barfed into the basin on the floor (TMI, sorry).  She couldn’t even remember how to use the meter for me to check for her. Persuasion wasn’t working as I tried to convince her to see a doctor, until finally I said, “I don’t think you’re in any condition to be making that decision.”  Not something I ever thought I’d have to tell my mom!

My husband carried mom to the car, and one of my brothers met me at the ER doors with a wheelchair to take mom inside while I parked.  By the time I got inside, not only was she in a room, but they’d already written admission orders!  She spent 3 days in ICU, and a few more days in the hospital once she was out of ICU.

For all the talk of HIPAA and people being ultra cautious about sharing anyone’s medical information – even with other doctors who need the information to treat the patient, I was pleasantly surprised at how open the doctors and nurses were in answering questions about my mom. We just wrote out questions on the handy dry-erase board, and as people rotated through the room, they’d notice the questions and answer the ones they could. Anything we asked, they answered.  And I don’t think it was because we delivered donuts every morning and had pizza delivered for the night shift.  The hospitalist even phoned me (not my mom) a couple days after discharge to check on how she was doing and let me know about an incidental finding that needed follow-up.

Where am I going with this?  What does it have to do with arthritis and the impossibility of getting a rheum referral?

Mom was instructed to follow up with an MD, not an NP, which made her finally willing to look elsewhere for her medical care while still staying in the same system that will accept her medicare.  The doctor she ended up with is fantastic!  We found someone who just finished residency last summer, which means she’s up on the most recent research and hasn’t been doing this long enough to be burned out.  This doctor listened, looked at tons of information, and listened.  This doctor didn’t brush mom off, but looked at the reasons she’d like to see a rheumatologist, and is going to do some research before the follow-up appointment (at which time I anticipate mom will finally get her referral)!

I really think it made a difference having diagnostic criteria clearly written out, indicating my mom’s score and why we believe she deserves a diagnosis. The doctor has a place to start in checking to see if we know what we’re talking about. It is amazing how good mom felt to finally have someone listen to her.

Hope your life is going well enough to also be crazy busy!


14 thoughts on “Being Heard

  1. Oh, dear! I don’t know whether to feel terror at what you went through, relief that things eventually turned out okay, or happy that your Mom is getting the referral she needs. Okay, all of the above. Being heard as a patient is critical in being an active participant in our health care. I’m sorry she had to go through this to have that happen. Miss your posts but I assure myself that simply means you’re busy with things other than RA, and that’s a good thing. Hugs.

    • I vote for relief & happy 🙂
      Yep, I’m definitely busy. I thought that as the kids grew up and moved away to college, I’d have more time. It’s not working out that way. I’m down to only 2 at home, and feel like I’m as busy as I was with 5 little ones. I have 149 partially-finished posts in my drafts folder, but just can’t seem to make time to even complete those. Thanks for reading and commenting, even though I’ve been horrible about clicking through to comment on yours 🙂

  2. Vomiting with diabetes, a very bad combination. Healthcare is a tough nut to crack. I’m glad she finally has a doc that is listening to her. As my parents aged I saw the doctors speaking more to my siblings and me and less to them. Very annoying since my parents were of sound mind right until the day they passed away.
    Hope you are feeling well.

    • I’ve noticed that home health people tend to talk to me instead of mom, and have to be careful where I sit to discourage that. It would be harder in a dr office. It might be fun to have t-shirts made. Hers could say “I’m the patient” and mine could say, “If you’re talking to me, you’re talking to the wrong person” 🙂

  3. Yes, what Mary said. A PWD can dehydrate in a moment from throwing up. It is a blessing you were there to answer her call. I am also glad the ER doctor communicated well with you.

    • I had no idea that it can actually be an emergency if she couldn’t keep stuff down. Now I know and won’t dither about whether or not to take her in if it happens again. 🙂

      • In addition to dehydration a person with diabetes who don’t keep food down have severe swings in their insulin readings and can go into diabetic comma if it is not rectified. Anytime my niece, who has T1D, gets a stomach flu my sister has to be conscious of this and she has had to take her to the hospital a number of times.

  4. Glad to see the post. Ohio physicians may be a bit different. They all listen and hear what patients are saying. They often may disagree with patient intentions and reject requests, though, and try to prescribe statins for everyone.
    I’m glad after forty years to be “up on the most recent research and hasn’t (sic) been doing this long enough to be burned out”. Most physicians now are getting early signs of burnout, except for those in Direct Primary Care (like Qliance in Seattle). I know of no other group of highly motivated, enthusiastic physicians. They have more time to engage patients which enables better negotiation of patient and physician values, goals and dreams (where the fun is).
    Patients may feel more and more left out as physician burn-out increases. I’m glad your Mom got a good one.

    • It was not my intent to dismiss doctors with experience. My beef is with inexperienced NPs. I’m fortunate enough to have been with the same family doctor for 21 years 🙂

      My issue is not with doctors, but with NP’s who don’t do their job. I find a distinct difference between NPs and MD (and if that makes NP’s mad then maybe they should work within their organization to fix the problem), and have been encouraging my mom to look for a doctor, but she has found it to be an overwhelming task, so stayed where she was. At the hospital, every time my mom had to say who her primary was, she’d name the clinic and the asker’s face would fall. One doctor even said, “Hmm, they’ve had some problems there.”

      For years, they’ve treated my mom as a non-compliant type2, simply because of her age, and refused to listen to her explanation that she’s type 1. I don’t think she kept copies of old reports, but when she was diagnosed, the insurance company tried to deny claims based on the pre-existing condition clause; the doctor at that time was able to provide labs documenting both new-onset and type1. It doesn’t automatically switch to type2 when someone goes on medicare, but they wouldn’t listen to her. So she has nerve damage and vision impairment that might have been prevented if they’d listened to her and left her insulin the way it was. She had no problem with her A1c while she was treated as a type1. It’s when she retired (and took up volunteer work that keeps her busier than her job ever did) and went on medicare and had her insulin & dx switched that her A1c increased. But they wouldn’t listen, and a patient can’t just go to the pharmacy and say, “No, I want to keep taking what I was before.” One of the first things this new doctor did was make notes to fix mom’s diagnosis in their computer. The doctors in the hospital listened, and the new doctor she saw when she got out listened. It shouldn’t take a dka admission to get a diagnosis fixed in the computer when the patient has been trying for years to get it corrected (but I really think my mom has to take part of the responsibility because she could have put it all in writing and required a response, but didn’t).

      I understand, as does my mom, that there are patients who request inappropriate referrals. It should be a simple matter of doing the appropriate history/testing/evaluation and then explaining to the patient what the results are and why the referral is or isn’t needed. Or at least having the patient see an MD instead of an NP within the clinic. One NP apparently did eventually include RF in my mom’s labs, then told her that they only refer to rheumatology for positive RF results. First, I find that appalling since it ignores the 20% of sero-negative RA patients and gives no room for professional judgement. More importantly in this specific case, we believe that my mom has psoriatic arthritis, so we’d expect RF to be negative. That’s one of the diagnostic points for psoriatic arthritis. I’ve spoken with my rheumatologist, and in hearing the symptoms, she was shocked that my mom can’t get a referral and asked me to take mom’s xrays to my next appointment so that my rheum can pull strings and see my mom without a referral. A patient with two autoimmune diseases, raynauds, joint pain, and significant family history of RA & PsA shouldn’t have this much trouble getting sent to a rheumatologist.

      When an older person with osteoporosis slips on the ice and falls down half a flight of stairs, the NP shouldn’t simply ask where it hurts and say, “It looks like you’re okay. Here’s the number for a massage school to help with the sore muscles.” Then a couple weeks later the patient is in the hospital for something else and imaging reveals that she has two broken ribs. Massage isn’t going to help broken bones heal, and I can’t for the life of me figure out how osteoporosis+fall doesn’t make the NP think that checking for broken bones might be appropriate.

      But mom survived, and now gets to see an MD, so things are looking up 🙂 Thanks for reading and adding your insights.

      • That’s outrageous!! To change a person with T1D’s diagnosis to type 2 is down right life threatening. Like you I understand that people go to the doctor having seen what they think is the best med on the tv or think they have a disease because of what they have seen in an ad. That being said, to simply discount a patience verbal and written medical history is dangerous. My parents were of the generation that didn’t argue with a doctor. They just took what the doctor had to say as correct and unfortunately it cost them dearly in the end.

        I’m glad it worked out for your mother and that she is seeing a doctor she has confidence in now.

  5. When I read your Mom’s story, I know it’s totally true. And sad. I mourn for my profession which sold out to thieves from Wall Street, dressed as harmless hospital administrators and pharmaceutical representatives and faceless insurance companies with phony quality initiatives and empty terms that somehow appealed to good boy and girl scouts like physicians. Now, we have “Value” based care and drop down bonus-based EHR’s that prevent us from seeing the patient, who doesn’t get a drop down bonus of their own. The mutant brain of the physician, who amassed impressive SAT and/or ACT scores is dulled by the mechanistic drivel of the pile of prescription rejections at the start of every year and the ensuing Prior Authorization forms to get the patient out of tier 4 and back to tier 2 on their pharmaceutical co-pay. There’s little room in the physician’s brain for the challenge and fun of developing a complex differential diagnosis that get’s your mother aligned with the best opportunity for achieving her remaining dreams. They used to have fun and get great satisfaction our of the patient’s “Thank You, Doctor.” That was the bonus. That assured the quality. That relationship kept the thieves away. I mourn for my profession and the patient’s it has abandoned.

    The NP’s and PA’s are used in places to keep physicians practicing at the “Top of their license”, meaning they don’t get to enjoy and deliver relationship-based care. The PA’s and NP’s have their own limitations in education and sometimes of licensure, depending on state laws, some of which you already mentioned.
    (p.s., I don’t use an EHR, but own two. I have fun every day. Patients say “Thank You, Doctor.” I get to discuss personal nutrigenomic strategies daily with patients, if indicated, with time to listen to their story- the most important part of the visit- and their values, goals and dreams. I am a fossil. Endangered fossil. I expect to drop all relationships with insurance companies at the end of this year to expand my Direct Family Medicine practice which enables patients to tell their story, unencumbered with the next massive wave of phony quality initiatives which will result in a 6 to 9% penalty for Medicare patients and already is 12% with one commercial carrier.)
    Oops, this is long enough to be a blog post- so I’ll post it on my blog, too.
    Peace to you and yours.

  6. Hi, I just want to leave a quick message that most of the issue with RA are caused by the medication for its treatment and the side effects that comes with it. As a scientist who has spent over 25 years developing products for the treatment of RA that simply get your own immune system to correct itself and without any side effects, I am almost as frustrated as you are with the system because very few people want to hear about it. I was first told get it to a certain level and we listen and then nothing. You know what I have actually developed it and now it is up for sale. I am not here to sell them so not mentioning the name but just to say that there is a new product without side effects and you can mange the pain and live a relatively normal life.

    • My suspicion is that the real reason you don’t leave a link is because you know that gets your comment flagged as spam – rightly so. Instead you hope that you can leave a link in your name and entice people to click through. That’s not happening here. My readers are smarter than to believe your absurd claims. The problems with RA are due to RA. The problems caused by meds pale in comparison to the problems caused by RA. If you wish to make claims, be specific. Exactly what side effects are so horrible that they outweigh the pain and deformity of RA? What studies substantiate your claims that your product is so much better? You claim to be a scientist, yet refuse to identify yourself. Hogwash.

      • My Name is Iraj Ghadiminejad, I did my PhD on Autoimmunity at Kings College in London, UK. I was the first person to publish data as to how autoimmunity might be caused: “Molecular Mimicry” in 1986.
        In 1991, whilst I was a lecturer at the Imperial College in the Medical school and working in the department of paediatrics at St Mary’s Hospital, I discovered a compound in Children with an over active immune response. This compound is a natural anti-inflammatory molecule produced by the immune cells (T-Cells).
        I immigrated to Australia as the Head of Renal Research at the Children’s Hospital in Westmead, Sydney. It has taken me more than 25 years of work to eventually characterise this molecule and also find the precursors, that when provided to the body are converted into the active compound.
        I named these products ENDOR and to date I have developed 3 products called ENDOR cream for the treatment of Mild – Moderate Psoriasis, Eczema and Rosacea.
        The next product was developed for the more severe conditions of Psoriasis, Eczema and Rosacea and the product is called ENDOR 3.5. We have just launched our latest product called ENDOR Arthritis Gel for RA, Psoriatic Arthritis, Osteoarthritis etc.
        The following is the link to our website:
        Finally there are people who are genuinely working very hard to address these conditions and just because they are not the big pharmaceuticals, does not take away the quality of their work.
        I wish you all the very best.

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