The Scleroderma: The Blue-Lipped Zebra Report!

I’m thinking of myself as the “Blue-Lipped Zebra” these days. Let’s just call me the BLZ for short. You know, a rare breed of difficult patient who is ornery, persistent, and stubbornly insistent on getting straight answers. I’m trying to not use that zebra voice, but if pushed I may whip it out. I’m going after all my doctors to get to some explanations about my panting, blue-lipped, exhausted current state of being. I made myself promise to keep my internal dialogue under control and to not get pulled off topic. Sounds like a good plan, right?

Whew. It is only Wednesday and I’m pooped! I have talked with or met with three different doctors and scheduled 5 different tests. I also made repeat appointments to get back to these doctors after the testing is done. I went into this determined to do a better job coordinating with my doctors and to shift the conductor role to my new rheumatologist. I’m reflecting on what’s happened so far and what my next steps are, and I’ve decided to share with all of you.

Before I tell you about my medical adventures this week I want to show off the monster orchid. It now has 5 blooms open and it looks great!! Isn’t that an amazing color?

Prologue: I have been struggling with shortness of breath, extreme fatigue, and feeling dizzy/faint. My lips frequently look blue. The itching is insane, and what is up with these rashes? I have more recently developed abdominal pain in the area of my spleen. After initial testing my internist has diagnosed secondary polycythemia.

Act 1: The Internist

This was my first phone appointment. My internist is the doctor who diagnosed me with secondary polycythemia, which is a condition with too many red blood cells. The high cell count, in my case, is now presumed to be due to an underlying problem involving my lungs or heart; since lung and heart damage is common with systemic sclerosis that makes a lot of sense. We talked about my gene test results (I do not have the genetic mutation that would have caused the more serious form of polycythemia, which is good!) and planned my call with the pulmonologist. That’s right: I got some coaching from my internist! I agreed to send her an email about what happened with the pulmonologist and rheumatologist after I met with them, and she assured me that she would order any testing that the other two doctors did not. That’s right – I asked her what testing I should ask for. I love this doctor!!

Act 2: The Pulmonologist

Well, this didn’t go the way I thought this would… good thing I got some coaching. It started out with this doctor saying that she didn’t know what I expected her to do over the phone when she hadn’t seen me in her office for over a year. (She fussed at me last time for coming earlier than a year. I tried to make an appointment, but the nurse insisted it would be better for me to make a phone appointment before I saw the rheumatologist… ugh!!) I explained the situation to her, and she immediately said that she didn’t agree with the diagnosis, and that she didn’t think that my rbc count was all that high. <The BLZ was pretty disgusted by this and wanted to blurt out that the diagnosis wasn’t open for debate, but I throttled it into silence…> After redirecting the conversation to my symptoms (you know, ending up on the floor panting for air after a little vacuuming…) she did agree that there was probably an underlying problem driving the elevated rbc count and it would be good to order up some tests before I came to see her in her office.

Sigh. Why is this so hard?! I wondered if we had just been talking at cross purposes about the same thing. <The BLZ wondered why I had to keep battling for routine testing when my diagnoses required it. Whatever.> The tests were ordered and I agreed to make an appointment to see her in her office a few days after the testing was completed.

Act 3: The Rheumatologist

Finally, finally I have landed in the rheumatologist office that the BLZ has longed for. This doctor felt that the lung testing was absolutely warranted, and that if nothing came up she would go right for a cardiologist referral and heart testing, and a hematology referral also if needed. She kind of thinks that this is my heart, but it is good to get the lung testing done first. <The BFZ is now bucking around… happy for action, but a little scared, too.> She reassured me that the tests that were already ordered were exactly the ones that she would have ordered, but they were just the opening round. She mentioned a test that the pulmonologist has refused to order, saying that it is the only way to get accurate information. Yay! Then she did the exam and reviewed the notes on my orthopedic referral since I still can’t walk and I’ve developed more tendon issues in my foot. “Why hasn’t there been a follow-up on this?” she asked. She ordered two MRIs to look at my hip and foot, and gave me the paperwork to get a handicapped parking pass. She also ordered blood work, told me to call her after the testing was done, and that I should be in her office again in 8 weeks. <The BFZ was stunned. Usually I’m told to come back in 6 months.> I have the scleroderma director that I’ve been looking for, people!!

Epilogue

I spent 5 hours over the last two days making phone calls, appointments, reading all of the medical notes attached this week’s appointments, and writing emails. Whew. Through the constraints of scheduling calendars I will be talking about my test results with the rheumatologist before I interact again with my slightly hostile pulmonologist. When I read the pulmonologist’s notes on our phone appointment it kind of smelled of “cover your ass” and the BLZ’s nostrils crinkled in disgust. After begging for inhaled steroids for a couple years, when I saw her last time she offered me a few months worth. Yay! I said. I wanted to check with the rheumatologist before starting them because I’m already pretty immunosuppressed, which I did, and the inhaled steroids were prescribed soon after by my internist and I’m using them right now. In the notes she wrote that she had recommended these steroids and I that I had refused. <The BLZ immediately noticed the nasty trickery with the verbs there…she offered and I deferred!> She also described my landing on the floor while vacuuming as “needing to rest while doing moderate tasks”. The BFZ is beyond disgusted at that. <Get a new pulmonologist, the BFZ barks!>

In between all of this I also got my newest pair of Snowshoe socks done! How cute are these? I knit them holding a wildly bright variegated yarn with a dark, inky blue single ply yarn. My yarn information is on my project page.

So, it was a pretty darn good start of the week. Tomorrow I head off to get an echocardiogram of my heart, and over the next week or so the rest of the testing will happen.

Coronavirus, be good and stay away from me!! I’m going to be in a lot of medical facilities for the next few days.

You all be safe out there!

Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled cats.

30 thoughts on “The Scleroderma: The Blue-Lipped Zebra Report!”

  1. Well you have certainly done the hard yards in the last few days, not to mention the last few years. Some of your doctors are being very helpful. The pulmonologist is being a pain. It beggars belief that some highly educated medical professionals appear to allow their egos to cloud their professional duty and opinions. They seem oblivious to the pain and confusion they cause in not seeing and treating patients as vulnerable human beings. You are paying her salary after all. I hope the test results ease your worries. The orchid is fabulous and I love the bright socks. The knitting needles, beautiful wool and patterns are still calling to me from the bottom drawer!

    1. I think this is part of being rare. As I wrote this last night I suddenly realized that my upbeat attitude may be hurting me in the doctor’s office. I look pretty good for a scleroderma patient and I responded well to drugs as my skin has softened a lot.

      I haven’t pushed before this for answers because… the answers can be scary. December was just horrible so I’m over it and I’m going to get some answers!

      Today the orchid is just stunning! I’m so glad I bought it last year… it was at the end of its bloom, but the color was too nice to pass up. It all worked out great.

      You’d better get that knitting stuff going before the seasons change again!

    1. I wonder if she is under a cloud at work. Anyway, I think that my new rheumatologist can just take over or perhaps recommend a pulmonologist at her facility that I can transfer to. I’m done working with this doc. My lips turned blue in her office last time I saw her and she just said… huh… that’s interesting… it must be circulatory.

  2. I vote for a new pulmonologist too. Can the new rheumatologist suggest one? You really need partners to work with not people who just cover their own ass.
    The socks and orchid are lovely!

  3. I was listening to a podcast this week about how doctors will become obsolete in 20 years because computers will better be able to diagnose patients and take all the information normally observed by each specialist and look holistically at all test results. (In case you are wondering they said Surgeries will be done by robots and nurses will not be obsolete but more in demand.). I know this doesn’t help, but hearing your medical story makes me think that a computer may be better!

    1. Me too!! I’ve been battling that human tendency, once they get a negative result for a specific condition, to decide I’m okay. I literally have to keep saying… I cant breathe and my lips are blue!!!

  4. Thank heaven you have the joy of orchid and knitting to counter the stress of dealing with a serious medical condition. Your socks are beautiful!! Prayers for health. xoxo Regina

  5. Wow! I’m so fed up with today’s medical providers, not to mention the huge egos that can get in the way of real progress. Good for you for taking a stand and not taking no for an answer. I’m so glad to hear you have someone on your side now, and that you are getting the help you need. Also, don’t discount the stress of losing your beloved McKenzie. Grief is exhausting. I’m not saying that’s causing the fatigue, but the loss and grief certainly can’t help. Sending a gentle hug your way. Alys

  6. That all sounds exhausting. Good for you for staying on top of it all! Sounds like you have a good plan to get a new, better pulmonologist. Your socks and orchid look great!

    1. It is exhausting!! I’ve planned it out so I have a recovery day at home between outings for tests and appointments. Today i got my handicapped placard for the car so i won’t have to walk as much, which will help a lot!!

  7. Good for you! It’s exhausting to have to fight to get proper care and it is unfortunate that you have to be your own advocate in our medical system. I am so happy that the rheumatologist lived up to your expectations and hopes. While all the testing and possible answers may be scary, its so much better than not knowing why you feel so bad.

    Thank God for knitting! It’s amazing how with each stitch, project and all that squishy, besutiful yarn can get you through

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