Today, I want to take a minute and share with you what has been happening for the last several months. In great part, writing this post is also about catharsis, but if you’ve been reading my blogs for any length of time, you also know that I feel it is very important to me to share where there are known issues within a given system that create problems for everyone. I do this for awareness, and I do this so that we can pray, and put our good intentions toward a healing solution for the problem area.
Over the last four months or so, there has been a drastic decline in how often, and how much I have been posting. Often, there’s been depression seeping through as well. Here, now, is the biggest reason why:
As many of you know, I have a decent amount of knowledge regarding the “business of medicine”, particularly from the insurance and Medicare side. My husband has even more experience in the hands-on, taking care of patients side (and he is amazing at what he does!). Working in the business, however, does not mean that you are less susceptible to every nasty little thing that you can catch. In fact, it makes you more likely to catch anything and everything that is out there.
For those of you who live in the U.S., many of you may not be aware that, when it comes down to medical treatment, what is and is not covered by insurance, is, in most cases, decided on by Medicare. If Medicare doesn’t cover it, then you are usually out of luck. And that can create major problems for everyone. And I mean Everyone.
We sometimes hear in ads or in news, about bedbugs. What most people don’t know is that there is a similar “critter”, in the same family that is worse. Much worse. It’s called scabies. Scabies are rampant in the medical community, many many health care workers are aware of it. But no one ever talks about it.
Why would an entire group of workers not discuss an easily transmitted, rampant condition that anyone can get, including employees of a facility and future patients? Because, for many of them, talking about Scabies could cost them their job.
That’s right. In the medical profession, talking about scabies can cause facilities to fire the people taking care of your loved one. Why? Because Medicare won’t pay for the treatment if it is diagnosed in your facility. If you come from another facility with the condition, or from your home, Medicare will pay for the expensive medications, hospital stay, and all of the other medical conditions you may get from having the condition and taking the medications for so long (for example, kidney failure is just one possibility, heart conditions are another). But if you are in a facility and suddenly come up with a strange rash that nothing seems to treat, won’t go away, and gets worse over time, scabies is not even a possible diagnosis since the facility will make no money on it!
What makes Scabies so terrible? Unlike bedbugs which only clings to fabric (clothing, bedding, etc), but doesn’t cling to skin, scabies doesn’t just cling. Yes, it can, and does, cling to fabric, and can live outside of a body for about 3 days, but the worst part is that how a colony thrives and an infestation develops is that this microscopic creature (which is in the arachnid family) chews its way through your skin, and deep into your flesh. To make matters worse, there are typically no indications until about three to four weeks into your infestation.
This is what happened to us. In early November, my husband helped take care of a patient who was admitted to the hospital because of scabies. This patient’s condition (as I understand it) was so bad that he had been eaten to the bone in many places (on his hands), and had crusts all over his body. That’s right. He had been passed around from facility to facility (including the hospital) for several months, had even been home, and the diagnosis was never made. When my husband was helping to take care of this gentleman, proper “protection” attire was not adequately provided by the facility, even though proper precautions were required.
Of course, it was several weeks before we noticed the symptoms, and we started treating quickly was we had fully determined that scabies is what we were dealing with. We had successfully done so before, but this time turned out to be different. Scabies is one thing, but this time we were dealing with a different type. “Crusted” or “Norwegian” Scabies is far more virulent, due in great part that as they are chewing into your flesh, they create a scab, or crust over the nest which makes it virtually impossible to get to them, thereby allowing them to flourish.
This time, the treatments we normally use weren’t enough. We have spent the last, nearly four months, in a horrific nightmare, taking high dose medications which cause extreme physical damage (one of them, 24 hours after I would take it would have my muscles so tightly locked up that I couldn’t move), extreme depression, complete lethargy, mood swings and so on. The emotional impact was the worst. The emotional betrayal of the medical system, and of the facility where my husband works, provoked a reaction so extreme that it brought forth some of the deepest emotional wounds that either of us have experienced from our deepest childhood pain. The reactions from that alone have lasted over a month.
Every project that we had started or planned had to be put on hold. The office looks worse than it ever has. The fence we were going to put up for the garden had to be put on hold. We haven’t been on a walk in months, much less stepped on the elliptical or done yoga.
Now four months into this, it seems that we may have finally turned the tide. I took my last antibiotic last night, and my “scabs” are finally going away, with no signs of anything new. I’m finally feeling the depression lifting and I’m feeling more functional than I have in a long time.
Why am I telling our story when I know that it may not make any difference? On the chance that it will. Maybe our story will help someone else who finds strange welts on their skin that only get bigger. Maybe someone will find this knowledge and be able to help someone they love. And maybe, just maybe, with enough of us recognizing this as an issue, maybe more people will start talking, praying and maybe we can change the system.