The System is Broken

Hello,
I was planning on writing the blog post this past week but encountered a bump in the road. Just know that if you pray my little family would really covet your prayers.
On with the topic!
As a result of some challenges we had to put Princess (her new name for this blog :) ) on a different insurance. We were told by the professionals who work with us that this was a good option and that we could get Princess the medical help that she needed. They were somewhat aware that it would not be as good as what we previously had but it couldn't hurt to try. Besides it would be a fix for an imminent need. Mind you neither of these professionals had ever had any personal experience with this insurance but they had clients who had.
So I called the powers that be and set up Princess on this insurance. A few days later Princess visited her  regular doctor who gave us some prescriptions to fill. When I dropped them off at our local pharmacy, I was told one of the medications that Princess had been taking for almost three years, would not be covered. For the next three weeks her doctor and I begged and pleaded with the insurance to OK this medication. We were denied time and time again because Princess had never tried the shorter acting version of the same medication. So with an attitude of cautiousness we tried the "new to us" medication. It was as if I had given my daughter a sugar pill. It had no effect on her whatsoever. In fact this post highlights the effect it did have on her.
Thankfully Princess's doctor is very wise and encouraged me to apply to the manufacturer of the good medication.  This process took about two weeks to complete. The prescription for the tried and true medication based on Princess's need arrived via USPS about four days after we started on the new medication.
During the time that all of these medication issues were happening, Princess started to have increasing flare ups with a recurring problem. For the sake of the blog I will call them purple spots.
We took her to the ER for these purple spots. The doctors there told us that indeed she needed more care for them but since she was on this new insurance, another person would have to come out to inspect her purple spots. After about three hours at the hospital, a gentleman came out from the purple spot wannabe clinic. He interviewed Princess and then myself about these purple spots.  He made the determination that the purple spots were not that bad since they had mostly gone away by the time he arrived. He did, however, tell us that members of his clinic would be monitoring the purple spots. A few days later, the purple spot monitors came out to our house to see if they could help us out. To put it mildly, in addition to not helping with the purple spots, they actually made them worse. We asked for some in home therapy to help us learn how to best manage the purple spots. We were told that we would have to give up our professional team in order to get this wonderful and highly acclaimed therapy.
 I was not willing to give up what I know to be exceptional service. I know that I will not get a phone call back from their doctors or therapists in what is often less than 30 minutes. There are many times that I have had to call on the weekends. I always get a call back in a timely manner from both professionals that help us with Princess. In addition our professional team have been very supportive of our entire family for the past few years.
The purple spot clinic team did give us a few numbers to call should the purple spots get out of control again. Unfortunately the individuals on the other end of the phone were of no help either. They told us that if Princess's purple spots were not at a certain level ie did not cover a certain percentage of her body, then they could not help us. Princess's purple spots were now starting to affect the rest of the family's quality of life but still no help was provided.
Let me stop here and say that Princess's doctor was well aware of how bad the purple spots had become but she didn't want to prescribe any medication for them until we had the other medication snafu resolved. Her fear was that a new medication for the purple spots might interfere with the medication for attention.
At one point in all of this madness, I was on the phone with one of the members of the purple spot clinic venting my frustrations, she said "We hear that complaint a lot. This seems to be a problem. The system needs fixing." She was frustrated as well. She was just a messenger following the protocol of the clinic. 
I had another clinic worker tell me that she felt bad that her clinic could not help us. She felt that Princess's purple spots required a higher level of care than her agency could provide. 
On a recent day, Princess's purple spots were really bad. They were affecting her quality of life. By this time we had had numerous county people and clinic people tell us that the spots weren't bad. One community helper even asked us if we had tried washing her skin. Another purple spot doctor told me "We will not be coming out to your house today." At that point, I ended the phone call rather quickly.
One thing about these purple spots is that eventually they merge into one giant purple blotch. That is exactly what happened. Once they became a purple blotch, the clinic assessor determined that Princess could get the medical attention that she needed.
Unfortunately there was a very high price to pay. I hope and pray that my sweet girl can fully recover from the insurance agency's need to control costs.
Princess's purple spots are starting to diminish but the giant blotch could have been prevented had the insurance given her the treatment and the medications she needed in the first place.
As an aside, about a week after starting with the new insurance, I attended a new member orientation where I found out that their motto went something like this " We strive to provide the best medical treatment necessary in the most cost efficient manner." I feel like it should have read " We strive to provide medical treatment that is cost efficient to us but you may not get the best treatment."
Knowing what I know now, I would have never put my baby girl on this sorry excuse for insurance. Our goal is to get her back on quality insurance in the very near future.
I leave you with one final thought. After this experience, I am not so certain that government run insurance is the answer to our country's medical crisis.

 

Here is a picture of my sweet girl on a day when the purple spots are on vacation

Dennis the Menace on Steroids

Hi all,
Things have been pretty hectic around here to say the least.  Now that Summer is here I was going to try to blog once a week or once every other week. I guess that's not going to happen.
In the midst of our mayhem and chaos I have found something to laugh about. I am calling these last few days Living With Dennis the Menace on Steroids.
In the late 50's there was a TV show called "Dennis the Menace." On it a tow headed boy in a striped shirt and overalls was constantly doing something that caused his parents and his next door neighbor, Mr. Wilson, grief.
Since about Friday I have noticed that Princess has been doing things that are mischievous to say the least. My husband and I have taken to watching her like a hawk. At least one of us tries to be in the room with her at all times because we never know what might happen next. It's kind of like having a three or four year old.
Princess has always found her fair share of mischief but lately this has increased even more.
Here are a few examples in just these last two days. She got my biscotti jar that was full of change, out of the laundry area and dumped the contents on the living room floor. Mind you that jar weighed a good 10-15 pounds. She carried it about 50-100 feet without any assistance. A few minutes later she got a bag of Happy Meal toys out of the garage, emptied the contents on the family room floor and promptly began opening the little bags the toys came in. What she didn't know was that I was saving those to sell on Ebay some day. Most, if not all, were complete sets and could potentially fetch some nice pocket change. Not now they won't.  Before Princess and my husband went swimming, she put some Crazy Glue on the cement near the pool area. My husband promptly stepped on it. Which led to us  Googling how to remove Crazy Glue from skin. Later that same day, Princess left the Flubber/ Slime that we had made sitting on top of a piece of paper. Of course it had to be peeled off of the paper. Fortunately for us, the paper was replaceable. Today Princess made a disaster out of the family room while I was at Walmart. My husband said that she had a very nice set up in that room but when he went back to check on her, a few minutes later he came upon a very different scene. It literally looked like a tornado had blown in. Shortly after addressing this and while I was putting away groceries, Princess called for me to get my camera because she wanted me to take a picture of what she had done. She thought it would be funny to put her foot in the Fubber/ Slime that we had made yesterday. I guess I can be glad that: 1) The slime cleans up nicely and 2) That she didn't put on any of my American Girl dolls that I had allowed her to play with earlier. Yikes! The final thing my little angel did was to pull the little hair on one of my toes while I was standing in the pool. Her response: "Well I was just trying to make you look beautiful."
You are probably wondering why the change. The only thing I can think of is that, for reasons beyond my control, we had to stop her ADHD med and try a new one. This med has been one of her constants for almost three years now but the powers that be decided that we should try something else instead. Well after being on the new med for only four days Princess's doctor, my husband and I are all in agreement that she needs to go back to the previous med ASAP!!
Here's a picture of my darling's foot in slime.