Lower GI Spasticity Wreak’s Havok – Dysautonomia Untreated

Lower GI Spasticity DSC_0008

Friday came and went without an order written. Dr. V. was “with child” as she so aptly put it at my appointment with her two weeks ago, and wasn’t much help, and so my Dysautonomia rages on. Even with her baby’s untimely birth she was able to tell the nurse to have me “follow up” with the nurse practitioner when she could just as easily just given them permission to write the order for the saline and maybe I’d be starting to feel better right about now, but that would have been too simple. It seems that every time I start to “think positive” I am let down and I find out things aren’t looking up afterall.

I told the nurse who had delivered the message that the nurse practitioner was welcome to call me and write the order but there was no need for me to waste a trip to go out there just so that I could tell her what Dr. V. already knew herself. I reiterated that this has gone untreated for 3 months and my patience is reaching my limit. If Dr. V. was so concerned about my “stress” level then why stress me out further by making things unnecessarily hard for me. This runaround I was getting was BS and everyone, especially Dr. V. herself knew it. It was high time they put this condition down in my chart officially, quit monkeying around, and get down to business. 

“Look” I told the nurse, trying my best not to hit the roof, my irritation level already approaching 10, “I’m chronically ill. I have 3 appointments next week and I can hardly withstand being out of bed in an upright position for 15  minutes. I’ll be lucky if I can even tolerate the appointments I’ve got, so I sure can’t afford to make more trips out that aren’t absolutely necessary. That’s the whole point! I need this treated at home. All she has to do is authorize the order written by the nurse practitioner or whichever doctor is covering for her. It’s not that difficult. My GP was going to treat it until Dr. V. dragged extraneous stuff into the equation and he backed out, so in all fairness, she is responsible now. Number one; this should have been entered officially in my chart among my diagnoses. Dr. V. acknowledged that she was aware of it when I saw her. All the data and pictures of my purple feet are there for any doctor to see anytime they want, and number two; we already know that saline works for me, so why go back to square one and reinvent the wheel?”

“Yes, Ma’am” the nurse replied sheepishly. “I understand. I’m just passing on the message. There’s nothing I can do.”

Then an ugly truth occurred to me. The reason they wanted me to waste an appointment was so they had another reason to bill my insurance (which I’m sure doesn’t pay much), but that’s not supposed to make a difference in the level of care I get. Right???…Right???

“Let me speak with Dr. L. Isn’t he the head of the department?”

“No That’s Dr. E.”

“OK, then could you please let me speak to him? This is becoming too much to take. It’s time they did something about it.”

“No I can’t let you talk with him or any of the doctors. I have to have you go through the Nursing Supervisor.”

“What? I can’t speak to any of the doctors? That’s ridiculous! Look, it’s fine with me that Dr. V. is on maternity leave but if nobody on the team can call me to do anything about this then what good is this clinic? She assured me that I would not be left uncovered in her absence, but that’s what’s happening. One would think they’d prefer treating this earlier than later so it doesn’t become another emergency. I’ve already been hospitalized and in the ER in just the past few months. I can’t let that happen again. Things are already getting worse again.”

“That’s not how this clinic works. I have to have the Nursing Supervisor call you.”

“OK, if you absolutely must then please ask her to call me today so we can get this resolved. The weekend is coming up and I’m really not feeling well. I don’t want to waste anymore time.”

The nurse took my name and number and told me she marked the message high priority, but by the end of the day no call had come in.

Saturday I awoke from a sound sleep with a weak, irregular heartbeat and feeling woozy. There was an adrenergic feeling in my chest and in my muscles as though lactic acid had built up and I’d overdosed on it; a horrible feeling I know all too well (and there was nothing I could do to make it go away and nobody to call). All I could do was wait it out until Monday when doctors were back in the office.

At times like these it’s easy to start wondering why you’re being allowed to suffer. Do they dislike you? Are they that clueless about this condition as to think it’s minor and doesn’t need treatment, or do they just think your insurance pays so little you’re not worth it. None of these rationales is good because the long and the short of it is that you’re being neglected no matter how you look at it. That fact cannot be denied. Seriously, my dog gets more compassion at the vet’s office!

Sunday rolled around and I awoke early, several different times; first with fasciculations in the toes of my right foot, and then followed by a horrible rumbling in my stomach and the realization that the acute flare had hit once again with a vengeance. It felt as though someone was literally twisting my intestines from the inside. I gripped my lower abdomen in agony and the pain was so piercing I could hardly catch my breath, burping, lightheaded, and feeling slightly to moderately faint, with hissing in my ears. I then started getting nauseated. It literally felt as though my guts were going to explode! Then I began overheating. Every minute felt like an hour as I lay there waiting for the pain and gastric upset to subside.

Tonight I’m still not feeling well. I’m a little concerned about the appointments that got jammed up this week after the care slowdown because I feel like I really don’t need to be up out of bed. My stomach is rumbling, and I’m overheated but sort of feel like I’m having a cold sweat at the same time.

Yet another weekday has gone by and after a few more  calls to follow up still no help from General Neurology, Nursing Supervisor or otherwise. Message is still pending according to the switchboard operator as of late this afternoon.

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2 thoughts on “Lower GI Spasticity Wreak’s Havok – Dysautonomia Untreated

  1. I was seen by Emory genetics. My rheumatologist is who referred me. I had a positive. ANA and anti-DSDNA. Doing genetic testing was a final ditch effort for answers. (I have Neurocardigenic Syncope and POTS). I feel like there is an underlying condition that has yet to be diagnosed. My concern is vascular EDS. My visit was brief. I was somewhat examined and talked to like I was simple. My husband and I asked several question that the doctor really couldn’t answer. I was told that it was his opinion that I didn’t have the vascular type… however he did say I was hypermobile. He said my insurance “probably ” wouldn’t pay for testing. He told me I needed to go home and let my primary run the show. She needed to be the one referring me. I left so angry I couldn’t speak. This experience like so many others has caused me to crawl back into a safe hole. I’m now 45…. my father passed at 53 with an aortic anyrusim. I feel like I’m a ticking time bomb.

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    • Hi Lynn,

      Thanks for sharing your story! Wow! So the geneticist at Emory never actually did the genetic test? Are you on Medicare or Medicaid?

      Also, did the Emory doctor give you an official diagnosis on paper or was this all verbal?

      PM me on Facebook if you’d like to send me a signed statement and I’ll give you my contact info. https://www.facebook.com/Giftbearer

      Like

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