A Tragedy

A friend of mine who knows of my current medical situation sent me a link to stltoday.com's current article about a woman who was refused treatment at St. Mary's Hospital. The woman refused to leave. She got sent to jail for trespassing and died within a half-hour at the jailhouse.

This woman tried to advocate for herself. She was turned away. She risked everything to get treatment - even her life.

We cannot let this type of "provision" by our health care systems continue!

If you would like to read the story, cut and paste this link into your browser (for some reason, I am unable to hyper-link it for you...):

http://www.stltoday.com/news/local/crime-and-courts/woman-demanding-care-at-st-mary-s-hospital-is-arrested/article_ed640f3d-64a0-516c-88ff-fb770b5e9677.html

Please pray for this woman's family and for all of us who fight the fight for good health care!

The Email and The Advocate

In response to my last blog, Gage and I agreed, after much thought, consideration and prayer that we would make one more attempt for me to stay at The Facility. However, we decided that in order to do so, things needed to change… As you saw from my last blog, I was dealing with a LOT and not getting much in return. After making the decision to attempt to stay at The Facility, I wrote the following email to the Team:

Dear Team,

I want to start by thanking each and every one of you for the hard work that you have ALL done to help me make improvements in my body and to teach me about what my body needs to be in less pain. For that, I am extremely grateful!

Over the past several months, there have been many misunderstandings about what I personally "expect" from The PT Facility. I'd like to clarify. When the VP/Chronic Pain Counselor (CPC) first suggested that we have regular Team Meetings last July, he was speaking my language! I'm a special ed teacher by trade and that was what we DID! When the Team suggested to have The Exercise Guri work with me on exercises, my main PT be my Case Manager and help with pain management, The President evaluate me, the VP will also continue to be my Pain Counselor and the Office Manager be my Communication Liaison, it sounded like it would work! However, since we have tried this "team approach" for the last six months, we have all found that overall, it is not working for The Facility; therefore, it is not working for me, the patient.

The hardest part about having so many people on the Team is that there is a great deal of miscommunication and additional time required. When I taught, I dealt with the same things! It is TAXING. And, I want to thank you all for the efforts that you have made to do this for as long as you have.

What seems to be the case now is that this is just not the right approach for The Facility anymore. After talking to almost everyone, I am hearing that something needs to change. I agree that my expectations are part of that. I hear "Let's have Team Meetings! Let's get a crew to fix Stephanie!" and I am ALL on board! However, I recognize that the office cannot sustain that practice for long...

I spoke to the VP and my Case Manager (CM) last week. It was suggested that we slim down the team. It was then suggested that I ONLY see my CM and The Guru for PT, including reevals. Is this possible? I know that this may change the consistency with the reevaluation data, but, from what I am hearing from the staff, the Team Approach is not working for The Facility anymore, and I, as the patient, am suffering. The VP and President trusted my PT last August to deem her my Case Manager. I trust her with my treatment. I also see her and The Guru every week, so I believe that the communication piece will be easier on them. I was also told that every PT at the Facility is individually licensed & highly qualified; therefore, any PT can fill out the Guardian paperwork and complete the individual evals.

I just want to make it clear to everyone that the only reason I had the expectations that I would work with a Team was because it was suggested to me. My expectations can be flexible! I am still an appreciative patient. That being said, I am still a patient in need, and I just want what is best for my body. Since it has been recommended that we try a new approach, I would like to request that the Team considers this and we see what happens in regards to my rehabilitation.

I know that the staff will need to discuss it - but I thought it important to hear from the patient that I want to stay at The Facility for my PT services, I want to make this easier for the staff and I personally just want to focus on my treatment (not on all of the "team stuff" and emails). I want my experience at The Facility to be better - for everyone.

Thank you,
Stephanie

I wrote and sent the email last Friday afternoon, knowing that several of my Team members do not work on Friday and; therefore, may not get to the email before I had my two PT appointments on Monday. I went to The Facility with butterflies in my stomach. As much as I believed in my request and wanted to remain at The Facility, I only wanted to focus on my TREATMENT and RECOVERY – not on all of the political drama, emails and meetings. Was that too much to ask?

Someone close to me warned me that my email could be taken the wrong way – BECAUSE OF ITS LENGTH. It was recommended that I write shorter email; that when a health care provider (or any professional) receives a “long letter” they immediately feel threatened and takes a defensive stance. Do you agree?

I personally believe that the word "advocate" means that you have to be a little pushy... That is never the advocate’s intent, but WHY would you need an advocate if everyone did everything right and you had nothing to worry about or fight for? I say this because I was accused, by a loved one, of being "offensive" (like in soccer - moving fiercely towards the “other side,” not that I “offended” anyone – on purpose, anyways) with my approach to The Facility. What do you think?

Even more so, if this were YOUR body, YOUR treatment, YOUR only known means to pain release and rehabilitation, would you “fight” or would you sit back and do what you are told – even if your gut is telling you that something needs to change and the pain is actually getting WORSE?

Stay tuned for my next blog to learn how The Facility responded to my email…

Politics, Politics… Should I Stay or Should I Go Now?

In my February 17th Blog Entry (Back-Breaking Miracles), I talked about how during my latest PT evaluation, I threw out my back. I rejoiced in the fact that after being bed-ridden for 4 days, I was up and walking and almost back to normal. Almost…

Six weeks later, I was still almost back to normal. Now, as you know, normal to me is not normal to the typical 31-year-old. My normal consists of daily pain, daily medical treatments and extreme limitations regarding any sort of “normal” activity of daily living (aka: things that you do every day without thinking and that cause you no pain).

Six weeks later, I was frustrated. I was in severe pain and it wasn’t getting better. More than that, trouble was brewing at The PT Facility. Six weeks had gone by and every visit, every week, I was given excuse after excuse as to why the Team had not met to review my reevaluation. What was going on? I was told that one week, the Evaluator was on vacation. Another week, my exercise PT had taken off of work. Another week, one of the PTs openly admitted to me that the Team had “started talking about my results, but got distracted…” Another week, my Case Manager was, also, on vacation. I listened to excuse after excuse, nodding my head and accepting the apologies, but what about the pain? There was no excuse for that…

During week six, my Case Manager encouraged me to contact my Pain Management Doctor. When I did, I was asked, “What did the PT evaluation results show?” I wish I could answer that… One thing led to another and I eventually had to contact the PT Facility for answers; answers which were supposed to have been given to me at least a month prior.

If you have read any of my previous entries, you are well aware that I have grown VERY fond of this particular PT Facility and the entourage of PTs and Specialists who work with me on a regular basis. I have tried applying grace and patience to my given situation, for I thought of several of these professionals on a personal, even friendly, level. What happens, then, when one thing leads to another and no one is held accountable for a patient in need?

Before I knew it, my Pain Doctor was requesting necessary information from the PT Facility. The PT Facility looked bad. It looked very bad. I tried to explain to my Pain Doctor the excuses that were given to me by the PT Team, but he asked, “Were they just going to let you remain in pain for over a month without altering your treatment or making changes to help you?” Frankly, I did not have an answer for him. And I also found myself feeling cheated. Why weren’t the PTs making more of an effort? Why didn’t they have the promised Team meeting? Was it acceptable for them to delay such results and treatments?

My Pain Doctor did not think so and he directed me to speak to my liaison, the Office Manager at The Facility. As politely as I could, I explained the situation, specifically that I was concerned regarding the severe pain that I had been in since the reevaluation and the confusion that I saw between the PTs when it came to communication. When I had first started attending The Facility, the Team decided to be a Team – to have a Team Approach – with my Treatment. The President suggested that she conduct every-other-month reevaluations for data-driven treatment purposes and the Vice President then suggested that the Team reconvene within two weeks after the reevaluation to review the data, make appropriate changes to my program and provide necessary information to assisting physicians.

After several months, we decided that neither Gage nor I needed to attend these meetings. The Team could review the data when they had the time, and I could discuss my concerns and thoughts with my Case Manager, who I saw weekly, during our scheduled visits. This plan sounded amazing, didn’t it?

Unfortunately, at the Round Table, when we all had our first Team Meeting, not even the President nor Vice President thought about the non-billable time that it would take to gather anywhere from three to six Team Members together for a non-paid Team meeting…

Does this all boil down to money or what is best for the patient?

Today, when I attended my first visit at The Facility since the stand-off between The Facility and the Pain Doctor, I learned that it came down to the money. My Case Manager was told that the PT President did not “warrant” the need for Team Meetings, because they were un-billable; therefore, unjustified.

Tears in my eyes, I left feeling defeated. My Pain Counselor reminded me that I have a choice: I can leave The PT Facility. I can try to find a new PT or Team of PTs to help. I can find a new Pain Doctor…. I do have choices…

But why do I feel so trapped?

It has taken about two years for me to build the relationship that I have had with the PT Facility. I thoroughly enjoy most of those relationships! Most importantly, for six months, we all saw progress, REAL progress in my recovery. Then, the progress stopped. It reached a “plateau” as they explained it. They "needed the evaluation results to base the next phase of Treatment," they said. They had excuses for waiting to review the reevaluation results – I mean, everyone deserves a vacation, right? Right?

What now?

What would you do?

Would you stay at a place where you have hit the inevitable, political “bump” in the road (it all boils down to money in the end) or would you ask for your chart and go down the street to another PT facility, starting from scratch and praying that it would be different, knowing that every PT has a boss and every boss has a deadline or a budget or a designated number of billable hours in which every PT much fulfill?

Would you stay or would you go?

But You Look Good!

I recently went to the InvisibleDisabilities.org Website and discovered that their slogan reads, “BUT YOU LOOK GOOD!” That is why these disabilities, or illnesses, or conditions are all invisible. From the outside, you cannot see them, but just because you cannot see them does not mean that they do not exist!

As you know, I have been carrying my own Invisible Disability for almost half of my life. When I started writing my blog, several of you came to me and said that you, too, suffer from chronic conditions that greatly affect your lives. When I started asking YOU questions, I learned that those conditions – YOUR conditions - have these names:

Delayed Sleep Syndrome
Seizure Disorder
Meniere’s Disease
Fibromyalgia
Depression
Chronic Fatigue Syndrome
Arthritis
Chronic Pain Syndrome
Anxiety
Osteoporosis
Kienbock’s Disease
Irritable Bowel Syndrome
Migraines
Insomnia
Borderline Personality Disorder
Diabetes
Degenerative Disc Disease
Neofibromatosis (Genetic Tumor Disorder)
And MORE!

These diseases live inside of people who you know. These conditions are carried by your friends, your family members, your spouses, your patients your co-workers, your neighbors and other loved ones whom you see everyday!

According to the survey I sent out (which many of you responded to), these Invisible Diseases affect your lives in many ways, such as:

Loss of Sleep
Constant Fear or Anxiety
Severe Daily Pain
Depressive Thoughts or Tendencies
Feeling Unaccepted by Loved Ones
Loneliness
Worry regarding when the next Episode or Trauma will occur
Loss of Faith
Exhaustion
Decrease in Sex Drive
Fear of Rejection
Inability to Perform Daily Job Functions
Burdened by Continued Treatments
Decrease in Appetite
Infertility
Frequent Changes in Mood
Increase in Appetite (over-eating)
Inability to Perform General Activities of Daily Living
…. And Much, Much MORE!

To give you a greater picture of this epidemic, according to www.depressionperspection.com, a survey conducted in 2009 revealed that, “Approximately 18.8 million American adults, or about 9.5 percent of the U.S. population age 18 and older in a given year, have a depressive disorder,” (2009).

According to an article in Time Magazine, “More than a quarter of Americans suffer daily pain…” (2008).

Think about your life and the people who are in it….

Who do you know who suffers from one of these invisible diseases?

How can you help?