Beware – check out your providers

People with disabilities and others with specific medical issues, must rely on specialized healthcare companies for things such as medical supplies, services such as specialized testing, supportive care and many other things that cannot be addressed directly by our physicians.

In a perfect world, one would imagine healthcare services companies are started by people in the industry that recognize a need, that have a skill or interest in providing the service (rightfully tied to their need to make a living and support themselves), and one would hope the motivation to be of help to their customers.

Unfortunately though, I do find that there are companies that operate with a total disinterest in their patients well-being.  They simply want to get the product sold and get paid.  As long as the patient is alive and has health insurance, they’re happy.  One of those seems to clearly be Lifecare Solutions.

My use of  their “services” has been for respiratory care. I relied on them for almost 2 years, with my primary contact being through their “respiratory therapists”.

A respiratory therapist is supposed to actually examine and unsure the supplies they are giving you work.  According to their own Respiratory Therapist supervisor, when they deliver supplies, they are supposed to ensure they are in working order.  More specifically in my case, they are supposed to make sure BiPAP/CPAP equipment is functioning properly. Make certain the masks fit and function as intended, and again, according to Lifecare Solution’s (San Diego) own Respiratory Therapist manager (name with-held by choice), when they bring new equipment, specifically in this conversation a BiPAP mask, they should:

  • Evaluate the correct type of mask. (note: there are different types such as nasal, nasal pillow, full face)
  • Check the fit to ensure proper seal, no significant air leakage and
  • Connect it with your machine (CPAP/BiPAP) and check for leaks.
  • Operate the CPAP/BiPAP to ensure the machine and all equipment are functioning correctly.

The fact is, their “respiratory therapists” (with one exception) do NONE of these things.  In my last visit from a respiratory therapist from Lifecare Solutions, he did what they all1 do, which is, he laid out three different masks, still in their original packaging, and asked me “which do you want to try?”  I told him I didn’t know what I should try. I re-explained the issues yet again, hoping it would guide a suggestion, but his response was only, “Well, pick one and try it.”  As expected, he didn’t open it to see if it fit. He didn’t ask me to try it on. He didn’t even touch it. He simply picked up the other two and handed me a clipboard for a signature.  Not once during the visit did he even look for, ask for or look in the direction of the actual BiPAP machine. He didnt’ ask if there were any problems with it. He didn’t ask if the hoses were ok.  He simply wanted to get a signature and leave.  A delivery boy, not a respiratory therapist.

It seems that I’m far from the only one having difficulties with this company.

1 – they have one therapist who actually acts like a medical professional. Unfortunately he’s the only one. 

Reliquary of Purpose

The first sensation I notice when I wake is pain. The first thought I notice is me assessing the pain. How much of it is burning pain; how much is aching; how much my joints hurt; how intense it is. Next, I cautiously move my legs, my arms and turn my torso to see how much difficulty motion brings. Can I push myself up or do I reach for the cane? Finally, I notice the time, which is usually two to four hours earlier than I had hoped for. Pain is not compatible with sleep.

I didn’t realize until recently, that this daily routine was truly daily and likely forever. I thought it was just my back, or my knees or whatever seemed to be the most prominent item of the moment. I have been in pain for years without linking one pain to the next, without understanding that I was not dealing with sovereign conditions. As the intensity of the pain has escalated, I’ve been left with little choice but to examine it in more detail.

For over a dozen years I had consulted orthopedists, oncologists, cardiologists, neurologists and many others, all of which had inadvertently contributed to my habit of compartmentalizing issues; of not seeing myself holistically. Having been through multiple surgeries for my back, knees, neck and other tears and and issues gave me labels for what was that periods ‘current’ source for the pain.

About three years ago I added doctors of rheumatology and pain management to the list of physicians I see regularly, resulting in the addition of the terms myofascial, neuropathic and fibromyalgia to my view. Last month brought the addition of a “Pain Psychologist” and the solemn review of the word ‘chronic’.

Main Entry: chron·ic
Pronunciation: \’krä-nik\
Function: adjective
Etymology: French chronique, from Greek chronikos of time, from chronos
Date: 1601

1 a: marked by long duration or frequent recurrence : not acute <chronic indigestion> <chronic experiments> b: suffering from a chronic disease <the special needs of chronic patients>
2 a: always present or encountered ; especially : constantly vexing, weakening, or troubling <chronic petty warfare> b: being such habitually <a chronic grumbler>

I still find it interesting how I kept that word from my my perspective for all these years. I not only heard it, but used it on occasion. I did only ever utter it in encapsulated form (chronic disc problem, chronic sleep disturbance); never the completely encompassing ‘chronic pain’.

I have now. I looked back at all the creams, rubs, patches, electronic devices, exercises, braces and whatnot that have piled up over the years and in a brief absence of foolishness realized that not only am I now, but have almost always been and will continue to be in constant pain.

This entry describes the purpose of this blog. The simple summation is that I no longer want to try to hide my pain. I no longer want to go without expressing what I’m experiencing. I no longer want to deal with this alone. My upbringing taught me that acknowledging pain is weakness. Expressing pain is showing weakness. Sharing pain is selfishly burdening others. Regardless of my logical disagreement with these statements, the learned response remains. This is also a direct stab at those feelings.

I don’t know if anyone will read this or if it will matter to anyone in any way. That’s okay. I’m comfortable with my purpose being selfish in this instance.