Hatpins, Waist Squeezers, and Unplanned Naps

On By Lois RoelofsIn aging, Health, humor, RN, writing

I have a new diagnosis. Not exactly a pleasant one. I found out after I had a CT scan of the abdomen three weeks ago. I’d just flown home after six weeks in AZ, and when my daughter picked me up at the airport, I asked her to take me directly from the airport to the ER.

I’d felt nothing unusual during a Chicago trip in mid-January. But shortly after I arrived in AZ, early February, I felt a vague discomfort in my abdomen. Like a full feeling. It was intermittent, so I didn’t worry. But by March, I felt like an army of hatpins and waist squeezers were battling it out for the turf it occupied. I went to Urgent Care twice, which I won’t detail here, except to say if you’re a person of a certain age, you’re very likely to be diagnosed with constipation and Miralax will be ordered. Even if you’ve made it clear that C isn’t your problem. Take the Miralax anyway! Everyone has about a week’s worth of bowel contents shacking up on any given day, and you must give it a nudge for it to see the light of day. Oh, and don’t forget, you must take the Miralax until those contents arrive in the consistency of a Dairy Queen!

Yes, that’s what I was told. My goal had to include producing bowel contents that were the consistency of a mushy ice cream. I guess that was an effective way to make the information stick, because ice cream lover that I am, I’ve not had a Dairy Queen since. 

But since my general discomfort continued in AZ, and then some worse days occurred with the battle within my belly, and after a second Urgent Care visit that yielded nothing but a stroke-threatening high blood pressure, I decided to fly home three weeks earlier than planned.

The night before my hired airport driver arrived, my hat pins and waist squeezers pulled a wingding of an all-nighter. I greeted my driver in the dark on my driveway at 5:45 am, having slept at most an hour. I was punchy. How in the world is an 83-year-old woman supposed to act in the dark on the driveway with no sleep? My driver, who had a very fun name–something like Jimmy Grimwhim, asked me if I wanted to sit in the front or the back. I couldn’t see either of those locations, or him, so I gamely announced I would sit in the front with him if he didn’t bite.

He promised he wouldn’t and delivered me intact to Sky Harbor airport 45” later. I’d requested a wheelchair, because I know the airport is huge. My valet was a tall imposing young man who announced every bump along the 13” ride. Bump, ma’am. Bump, ma’am I’m so sorry, ma’am. Bump…

There were a lot of bumps. No kidding! At least fifty. The cadence of his announcements, if recorded, could have yielded a rap song. Bumpety bump bump.

So, when I saw my daughter’s face at my home airport, I was greatly relieved and grateful. I walked to her vehicle from the curb, cognitively aware of every bump in the asphalt. Forbid, I would land kerplunk on my own without the help of my valet.

Now, it’s time to get serious. When I’ve told folks the name of my new diagnosis I get blank stares. Even my doctor had never heard of it. In the few days between my ER visit and the visit to my doctor. I had devoured every word I could find online, and my doctor agreed with a referral to Mayo. Long story short, Mayo is not taking anyone with this diagnosis for all of 2025, and there is no waiting list. I was told to work with my own doctor. So, after more shenanigans, I will see a local gastrointestinal doctor at her earliest appointment at the end of June.

I hope she’s heard of it!

I’ve decided that for me to take on the management of another chronic condition—I’ve managed having fibromyalgia for over 25 years, I will have to tap into my usual sense of humor, even though there’s not much fun about it.

The name? Mesenteric Panniculitis. Not curable, but treatable—most of the time. Occurs in 1-2% of the population, thus listed on the database of the National Organization of Rare Disorders. And because it’s rare, there’s not a lot of info out there. From their website:

Mesenteric panniculitis, also known as sclerosing mesenteritis, belongs to a spectrum of rare diseases of the fatty (adipose) tissue of the mesentery. Mesenteric panniculitis is characterized by fat degeneration and necrosis, chronic inflammation, and at times, scarring and fibrosis of fatty tissue within the mesentery. This inflammatory and at times progressive condition is most consistent with autoimmune disorders. There is currently limited understanding of the progression of events that lead to the development of mesenteric panniculitis.

That’s just an intro. There’s lots more information on that highlighted website and on the websites of Cleveland Clinic and Mayo Clinic.

You’ll be hearing more from me as time passes. I’m very grateful to have found a group on Facebook called the International Mesenteric Panniculitis Society and a Digestive Health chat group on Mayo’s site. I’ve already found that each person’s symptoms differ, along with their means of successful management. So I have a challenge ahead as I search out what will work for me, but I also know I have readily available support groups online.

For now, I need a lot of naps! Along with various pains, fatigue is one of the more common symptoms. But that’s also true for fibromyalgia, so I don’t have to learn anything new. Wish me well! And if you know of others who have this, you can send them here!

Now, I’m looking forward to attending the Class of ’85 reunion to celebrate 40 years of nursing at Trinity Christian College in Palos Heights, Illinois. I was one of the lucky ones to help start this BSN nursing program and was acting director the year this first class graduated. To think they’ll be around 60 now. What fun it will be! I’ll tell my pins and squeezers they are not invited.

30 thoughts on “Hatpins, Waist Squeezers, and Unplanned Naps”

  1. So sorry to hear this, I live with primary progressive MS myself, and though not rare, it is incurable and still of unknown autoimmune origins. I am at the point where there there is no remedy to help me despite increasing pain and other age related ailments, not caused by, but exacerbated by the sclerosis scattered in my brain and spinal cord. And yet, we go on as best we can with what we have going for us for as long as we can. Blessings to you and all of you beloveds as you journey on. Thanks as always for sharing with us the joys, discoveries and yes, heartbreak of your story.

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  2. wendyposselt's avatar wendyposselt

    Just when you think you have encountered (personally or by reading) ALL of the things that can take you down in this life….new things come along. This sounds particularly digestively miserable besides the pain unrelated to eating. I’m not going to read up on this as I, too, have had Fibromyalgia for over 40 years (I’m 77). I’m interested, but fear I would be sure that I have something similar or another malady that I learned about when researching your issue.

    I don’t know what is going on with our health (noncare) system but have also heard Mayo is not taking patients or with huge delays. Is it time to move to Norway? I’m so glad you have a daughter nearby. I have made that trip to the Sky Harbor airport MANY times as Mom lived her latter years in Sun City. I’m also familiar with various clinics and Boswell Hospital (I think it is Banner Boswell now…).

    God give you COMFORT and news that encourages. Don’t watch the news. That would just rile up things even more as I have discovered.

    Praying for God’s BEST for you. Amen.

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    1. Wendy, so true! You hope not to get another limitation, but, boom, there it is. So far this one is very yuk. Some sx seem to overlap with fibro, so they can feel all consuming. My Urgent Care visits were to Banner! I went online to find documentation of my visits but nothing was there. Interesting that you know Sky Harbor too. And Norway may be a good option. Our current political situation does not provide a feeling of safety or sanity. Thanks for your insights and encouragement and prayers!

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  3. I know you know how to cope because fibromyalgia isn’t easy, but how frustrating to have another ailment that requires new forms of coping – along with the daily coping with the aging process. When they all interact with each other, it is a real challenge. I hope you can find medical help. Jim was diagnosed with Myasthenia Gravis and we were lucky to find a couple of excellent doctors at UofM Medicine. Maybe you can check out major university medical centers to see if anyone on staff is interested in learning more. I went to Mayo when I hit bottom with FM and was diagnosed there. We drove to Rochester and had a wonderful experience – I was saddened when I read they wouldn’t take you on. Maybe you should give them a call every couple of months – either you will be told no or they will get tired of your pestering them and relent (Biblical). I am adding you to my prayer list, Lois.

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    1. Thanks, Pat. How lucky you are to have found a good doctor for MG. I’m holding out hope that once I get in to the doctor here that I will find the same. Right now I don’t have the energy to seek out much more. The concurrent sx of fibro and this new thing are a trip to handle. But then there are spurts of relief and that gives me hope. I appreciate following you and seeing how you integrate beauty into your life! Encouraging!

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  4. Sorry to read this, Lois. I hope there’s a drug that can address your pain.

    Your e-mail sent me down a rabbit hole where I learned what mesentery is.

    I didn’t know until this past year that a person with one autoimmune disease has a higher chance of developing others. My husband has several.

    I’m headed to Ireland next month on a two-week, small-group tour. I’m culling political memes and comments from my social media accounts before I leave. The ACLU has sent an e-mail about the legality of border agents seizing electronic devices. One must simply hand them over. I can’t believe our country has come to this.

    I’m currently being evaluated for a cochlear implant. In 1999, I lost hearing in my right ear. Now my good ear is failing. I’ve had an MRI and CT scan and await a specialized hearing test. Since only one audiologist in our area does them, there’s been a lengthy wait.

    We had snow this morning!

    Wishing you relief from your pain.

    Love, M.

    >

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    1. Good to hear from you, Marcia! It’s been a long time since our joint Iowa class. You are experiencing a similar thing with waiting for a doctor. I’m sorry to learn of your further hearing loss. Not good at all. I’m sure you had fun reading about the mesentery! Stuff you never wanted to know! I hope your travels are safe and fun at this very uncertain time!

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  5. Lois, Sorry to hear more is piled on your plate. May your strength, persistence, and sense of humor get you through another physical challenge. You have a positive track record. And in the midst of all your pain you continue to share your story, educate others and look positively toward the future. You are an excellent role model.

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    1. Thanks, Marianna. Humor and the opportunity to help and educate others, I hope, will help me navigate this new experience. Right now I’m being sawed in half again, so I must get up from my chair soon. Changing position often helps. Crazy!

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  6. So very sorry to hear this. Life is just full of nasty surprises, isn’t it? Hope you find a way to manage your condition sooner rather than later. Keep smiling. Sometimes that’s all it takes to get through another day.

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  8. Lois, I was sorry to wake this morning to read your email. I have never heard of that disease and I’ve never heard of a clinic refusing to take more patients with a certain disease. I understand, although I don’t suffer from it that fibromyalgia is a painful and troubling disease and now you have this to deal with as well.

    Sending hugs from far away New Zealand. Judith

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  9. Cynthia Sander's avatar Cynthia Sander

    So sorry to hear this, Lois. I second the recommendation to connect with a major academic medical center. I don’t know what there is in SD but do know that University Hospital at University of Iowa is top notch. Too bad that Cleveland Clinic is so far from you. It’s GI clinic is reportedly excellent. I’ve known a couple people who have gone there. I can relate to your frustration in finding help for a rare disorder. About 10 years ago one of my nieces developed persistent vomiting with abdominal pain and significant weight loss. Multiple ER visits and hospitalizations over a few months with no diagnosis. She was finally referred to Indiana University Hospital in Indianapolis where eventually she was diagnosed has having gastroparesis, a less common, but not rare, chronic disorder. She has finally, after quite a few years, found a treatment that helps control the nausea, vomiting and pain. Praying that you will find help quickly and an effective means of managing your symptoms.

    Enjoy your time at the TCC 40th for the class of 1985. Hard to believe that former students age at the same rate we do!

    .

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    1. Cynthia, thanks for your input! Yes. I need the help of an expert now. The dr I will see deals with inflammatory bowel diseases, so I’m hoping for the best. Gastroparesis sounds worse! This has nausea but no vomiting and nausea is bad enough! The reunion will be fun! To think these grads are the age I was when I taught there!

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