It's Complicated

Gage and I got a lot of information from my Pain Doctor/Physiatrist on Friday. It’s complicated… And, as much as I usually share EVERYTHING with my blog-family, Gage and I are still processing through everything so some news will have to wait. Also, we want to be sure to talk to family first, so stay-tuned for those results and I will share with you the Diagnosis/Results soon.

For now, please keep us in your prayers. What I can share is that I had to have 2 cortisone shots in my derriere – to help my low-back and hip pain. Have you ever had a cortisone shot? The are PAINFUL!!!! They hurt when you get them. They hurt for up to 3 days later, too! Lucky for me, I got to experience their BITE for the entire 3 days.

The Pain Doc agreed that my pain is severe and he made some drastic changes in my medicine. While we are hoping that the end results will be worth it all, I have to go through weeks of detox and withdrawal. According to The Pain Doc, even though I may not be psychologically addicted to my medication, stopping my medication and switching to another will be very difficult on my body. Another "lucky for me" - I also have SEVERAL weeks of this “weening” to endure. It effects everything: sleeping & eating; hot-sweats & cold-sweats; mood-swings/my emotions are very difficult to control; nausea. I am hoping that my body re-adjusts quickly, because the past few days have been physically and emotinally AWFUL!!!

Thankfully, we have been very blessed this weekend, despite the hardships. For the first time ever, we got an offer from the Laundry Fairy! Additionally, my wonderful neighbor surprised me with Starbucks & a new ceiling light for the living room. On Saturday evening, one of our Best-Couples-Friends made sure we were taken care of after an “inconvenient” church experience. And, my darling friend from my Women’s Prayer Group gave me (literally) 5 BAGS of clothing. All in ONE weekend! And, ALL without us even explaining our “situation” to any one of them prior to their Amazing Acts of Kindness. Thank you friends!!! God must have been whispering in a LOT of ears this weekend because we felt blessed!

I know that cliff-hangers like this are sometimes annoying. I’m sorry! I wanted to give you a slight update and ask that you continue to pray for me as, while my body adjusts to the new meds and says good-bye to the old, I STILL have to have my PT reeval TOMORROW afternoon! I am scheduled to be at The Facility for 4 HOURS. Pray that I can make it!

I’ll write soon so keep checking for updates.

Thank you for ALL of your love and support!

Appointments and Prayers

Whenever I see a doctor for the first time in months, my mother-in-law (aka Dr. Mom) recommends that I bring with me an update. That way, the doctor has – IN WRITING – changes since the last visit.

I have an appointment with my Pain Doctor on Friday (aka TOMORROW). Dr. Mom also suggested that I have an agenda of sorts before each appointment. At this appointment, I plan on discussing:
- How can my pain be better managed?
- What are my next steps or options in the Disability process?

One thing that I have mentioned, but not talked much about in this blog is my Vocational Rehab Program. Last August, The PT Facility wanted me to, by NOW, have a regular schedule at the Facility that included daily, 4-5 hour exercises and activities that would get me ready to return to the classroom. Unfortunately, as you know from the Reeval Results, that is not an option for me. However, I have tried several other forms of Vocational Rehab this year.

In my update, I included this information:
Vocational Rehab Program: Instead of increased exercise & OT at The Facility (as suggested in August 2012), the PT Team determined that it would be in Stephanie’s best interest to research other occupations & attempt various volunteer positions to determine capability and pain threshold.
• January 2012 – Current: Unpaid “Internship” with Marketing Company: flexible schedule; attend meetings 1-2 x month (1-3 hours); training on computer (1-3 hour sessions); work on writing projects from home as able (hours vary); research topics; write book on chronic pain.
• August 2011 – Current: Attempt at being a class “room mother” (volunteer teacher's assistant/secretary); only capable of grading papers/etc. from HOME; not able to complete tasks at the school; 2 x month (1 hour each session).
• September 2011 – Current: Lead Women’s Prayer Group. Leader Position. Designs lessons & itinerary. Facilitates meeting. In charge of writing & sending monthly Newsletter. (Attending the group itself causes pain due to the length of meetings (3 hours); can manage only 1 x month/started 2 x month and had to decrease meetings; can produce Newsletter at home.)
• August 2011 – December 2012: Tried volunteering at a local elementary school on several occasions; working with children in the classroom setting; 1-3 hour sessions. Increased pain after each attempt.
• October 2011: Special Education Advocate; helped parents of children with special needs understand their rights and options for services for their children; mostly communicated through email; worked from home; unable to attend school meetings due to Disability restrictions.

After reading my update to my Pain Doctor, I felt rather accomplished. I HAVE tried several avenues for employment. I have not been one of “those people” who have sat at home, sucking the country dry of its resources and begging for money so that I do not have to work a 9-5 job. However, I did get discouraged, because most of the “jobs” I tried, I had to stop or decrease due to the amount of increased pain that each caused!

In the blog: 21 Months Post-Surgery: Where Am I Now? You told me to follow my dream as an author. You encouraged me to work on RECOVERY and you supported me in my work towards bringing Awareness to others about Chronic Pain Conditions and other Invisible Diseases.

Please pray for me as I attend this appointment with my Pain Doctor on Friday – and as I endure another PT evaluation on Tuesday, April 17th. Please pray that my body can handle each appointment, that God uses the Doctors’ Hands to heal my tortured body and that Gage and I get positive answers regarding my disability situation.

I’ll keep you up-to-date on the appointments to come so STAY TUNED!

Letter to Loved Ones

Letter to Family and Friends:

I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

I NEED TO BE SHELTERED dropped off at the curb and told, don't try to do that, let me help you.... There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.

I NEED TO FEEL PROTECTED even though I can't be safe on the inside at least I can feel if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.

I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.

I NEED TO FEEL CARED FOR when I am feeling sick everything is hard to do, even dressing and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, "let me empty the dishwasher", or “so what do you need me to do?” I FEEL GUILTY when I can't do the daily inconsequential details that are the GLUE HOLDING THE HOUSEHOLD INTACT.

I NEED TO FEEL RESPONSIBLE I know the latest research, I am on the internet each day to learn more, please don't say B-12 might cure me, I’ve tried the miracle cures and read the articles. DON’T YOU KNOW how DISAPPOINTED I GET WITH MY OWN BODY for NOT COOPERATING?

I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.

I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into lunch with the girls after a manicure. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over lunch and judging other women's clothes and homes and accomplishments.

I NEED TO FEEL AFFIRMED So many people scoff when I can't "Do just this one little activity, and it IS EXPECTED." I get tired of feeling guilty for not BEING ENOUGH to people that I don't care about in the first place. When I rant over the injustice of my illness, don't try to talk me out of it, or encourage me, just say "I KNOW, IT ISN'T FAIR, YOU DON'T DESERVE THIS."

I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left-out of a lot, because I go for periods of time when I am unable to do much; they think I probably can't participate, so they forget about me, or just don't even invite me. It is LONELY being ill over a long term.

I NEED TO BE ENCOURAGED The thought of being sick like this for the rest of my life INDUCES WAVES OF PANIC. It sometimes seems like a life not worth living, the quality is so poor so much of the time. I’m a Christian, I have great faith, but it can be overwhelming, especially when it’s implied "if your faith were greater, or if you would just DECIDE not to be sick....." We HAVE ALL TRIED THAT - it doesn't work.

I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company....I'm SCARED, REALLY SCARED. I wonder who will remember me when I’m gone and if I’m making any sort of impact on the world at all to validate my life. REALITY looms large and feels ominous. It seems like I’m PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.

I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bed-rest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don't even expect gratitude, I may not even realize, but when I get up, a lighter load will be blessed.

I NEED TO BE NURTURED I just got an email requesting a group of us to get a nice meal up for someone, because she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time a meal was brought to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don't even realize sick MEANS SICK. Our families suffer too, and would like a warm meal, as much as the lady who just had a baby or the woman with toe surgery.

I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR AND A THRIVER. TO KNOW that there are women out there who have never had more than a broken acrylic nail and an unreliable housekeeper, is infuriating sometimes, especially when it’s implied they must be better than me or I wouldn't be sick all the time and unorganized and uninvolved. I know we don't know what people's lives are like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH few things I could do today that will make a difference over the next 30 years (it is almost always to be a good mom and wife).

I NEED TO BE RESPECTED I am intelligent, I am attractive, I was once beautiful.... It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively. I'm too tired to shop for them, and if I did shop for new clothes, I wouldn't have energy to wear them anywhere anyway. I CAN DO THINGS, I just can't prove it very often. I AM SOMEBODY not a disease, but the disease overshadows my chance TO BE MYSELF.

I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn't seem real or possible for a minute, almost shocking. I can't do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.

I NEED MY DIGNITY It’s important for me, with so little control over anything else in my life, to at least have my dignity. Please DON'T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren't wearing lead ankle weights each day and trying to walk through neck-deep water (this is what it really feels like). Everything is ten times harder for me than it is for you.

I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I’m not going to doctor after doctor and struggling to survive for ATTENTION. Believe me, if I wanted attention, I’m bright and capable enough to get it in other ways. I’d rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I’m not, it certainly isn’t worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?

Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.

DON’T TALK, JUST DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or.............anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don't know if I will be able to follow through on them. Even planning takes energy, which may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan...at least we will have done something.

Love,
Anonymous Survivor

I recently ran across a blog where the writer, a person suffering from Lupas, re-posted this letter. This is a letter from an annonymous writer who also has a chronic, invisible disease. When I read the letter to my husband, he said, "Are you trying to trick me?"
"No! Not at all! Why do you ask?" I wondered.
"You could have written this letter..." he responded.

I could have written this letter, but I didn't. I found great importance in this discovered treasure. From the survey responses from all of you, I knew that I was not "alone" in my battle with invisible disabilities or chronic conditions. Additionally, in the past few weeks, Gage and I have stood by my dear friend's side as she had surgery for endometriosis, I tried frantically to reach another best friend in another state who also had surgery, but for a hernia and we reached out to a former work colleage and friend of Gage's who was diagnosed with MS. This letter and these close friends reminded me that I am not alone with my pain and frustration in this WORLD; there are others out there who need a voice, and others out there who have something to say.

Please take these words of wisdom to heart. There are so many suffering each and every day. I've asked this before and I will keep asking:

What can you do to help a loved one in need?

Who do you know who is suffering? How are they doing? What do they need? When was the last time you sent a card, dropped off a meal or offered help around the house? Why wait for the next surgery, the next round of being bed-ridden or the next big emergency? The disease hasn't gone anywhere... You CAN help TODAY!

(Letter taken from) http://lupusincolor.blogspot.com/2011/09/letter-to-family-and-friends.html

21 Months Post Surgery - Where Am I Now?

Since the Surgery, I have tried, endured and been treated for countless pain-relieving interventions:
- Over 100 Physical Therapy visits
- About 50 Acupuncture Treatments
- 4 months of Biofeedback Therapy
- Countless Cortisone Shots
- Chronic Pain Counseling
- Pastoral Counseling
- A Neurofeedback Evaluation
- Weekly Independent Physical Therapy
- Weekly Vocational Rehabilitation (attempts)
- Daily Manual Therapy
- Daily Medicine
- Reike, Healing Hands, Alter Calls, Prayer Groups, etc.

What has happened since these Treatments?
- Continued daily pain.
- I have thrown out my back at least 5 times in the past year, causing me to be bed-ridden.
- It was determined that, at this point, I cannot perform the functions of my job as a Special Education Teacher.
- I have been on a medicinal roller-coaster.
- I have not been able to successfully complete a consistent routine with Vocational Rehabilitation due to the inconsistency of my body and pain levels.

What did my reevaluation REVEAL?
During the reevaluation, I was required to perform two different Evaluations that determined my progress or capacity for movement and ability. I completed the first evaluation with little pain or problems. The second evaluation consisted of about 10 exercises/movements in which I was to complete as a circuit-routine FOUR times. I was only able to complete the second evaluation ONE time. During the second set, I threw out my back and was labeled “unable” to complete evaluation. From what I could perform, my Physical Therapist determined:
- I cannot lift or carry or hold more than 15 lbs.
- I cannot push or pull more than 12 lbs.
- I cannot sustain “static positioning” (holding a position for a period of time) such as: I cannot sit for longer than 30 minutes; I cannot stand for longer than 20 minutes, etc.
- I cannot perform repetitive movements (bending forward, squatting, reaching at any level, etc.)
- I am able to Crawl or Kneel and maintain such sustained or repetitive movements.

The President was required to send this information to my Disability Provider. The question that now needs to be considered is: Can I return to work in any form (part of full time) by THIS August (in FOUR months)?

When I discussed this question with The Guru and my Case Manager, both physical therapists agreed that I cannot return to work – IN ANY FORM. If I were to try, they anticipate extreme pain and flare-ups.

Next Steps in the Disability Process:
This month, I have an appointment scheduled with my Pain Management Specialist and my Primary Care Provider. These medical advisors are now going to review all of my treatments, my current physical state and determine whether I should:
- File for an extension for Long Term Disability (with the intent to return to Special School District full time)
- File for Permanent Disability through my current Plan or through another plan offered through my Retirement System
- Determine if I am capable of performing any type of work – full or part-time – and move forward with The Disability Provider’s Vocational Rehabilitation Program.

What do you think? Given ALL of this information – can you think of ANY job in which I could possibly do on a regular basis that would not cause increased pain?

What now???

As soon as I find out what these doctors think, I will let you know! Stay tuned…

Since the Email...

[First appointment since The Email heard around the PT Facility:]

My first appointment – with the Guru – went amazingly well! She used the results from the reeval to alter some of my exercises, she took notes and asked relevant questions the entire time and we actually had a little fun together. Even though the exercises are difficult for me, The Guru is amazing at making her patients laugh to distract them from the physical pain. This is quite a talent that she has!

My second appointment with my CM went as expected – emotional. She started by saying that she did not want to spend too much time discussing everything, but that she needed to "clear-up" a few things… She told me that she talked to the VP and President (she did not read the email herself) and was confused about the term “miscommunication.” I asked her to be specific and she asked me for specific examples of miscommunication – which I shared with her as I shared with you all in the last blog. My jaw dropped as she admitted that she did not “remember” many of those conversations with me… She also denied a few of the things that she said to me – which hurt more than anything because I felt her responses were not just inconsiderate, but negligent as well! I always considered she and I “friendly” – and I told her that, because of our friendly relationship, she often told me things that I did not believe were in my best interest to hear. For example, when she told me that the team “started talking about me then got distracted…” that was NOT in my best interest for me to hear. I told her that. She nodded her head, understanding.

After about a 30 minute conversation, we started treatment and then I burst into tears. Picture a massage table, I’m lying on it flat and my head it sticking through the face hole – and tears start dripping from my eyes.

“I really want to stay here, CM,” I sobbed.
“Steph, don’t cry!” her voice cracked and she grabbed the tissue box, but I couldn’t stop crying. I could not.
“CM, I’m not trying to fight you or anyone at The Facility – I just do NOT want to feel nervous when I walk into these doors. And, I need to feel like I want to be treated here. I don’t feel that way…”
“Steph, we want to treat you! It is just confusing because if all you want is treatment, then why did you send that email and talk to the VP?” she asked.
“I wouldn’t send the emails if I thought that I was getting the treatment that was promised or that I believe is needed,” I responded. “And, CM, this is my life. I only have four months before the Disability Company reviews my case and will likely force me to quit my job and drop me from any Disability Compensation. I feel like when I fight for better treatment, I am fighting for my life!”
“Okay,” she said, as if it hit her for the first time that because of my complicated case, I had more on my mind than just a weekly visit to the PT.
“What treatments do you think that you are not getting?” she asked, moving forward.
“Well, I threw out my back AT The Facility and no one did anything different to treat me! Then, the President told me, six weeks later at that, that I should have been coming in more than once a week if I had hurt myself, as if she were blaming ME for being in pain for that long” I said.
“I agree,” CM started, “If you are hurt, you should have come in more.” I was getting upset - she still was not taking responsibility for the miscommunication.
“Then why didn’t anyone,” I paused and looked at her, “Why didn’t you, my Case Manager, tell me that I needed to come in more often?” I asked.
“I didn’t think that you could given your financial situation,” she said.
“I appreciate you taking that into consideration, but shouldn’t that be my choice?” I asked, “And if no one tells me that I need to come in, then I don’t see it as treatment.”
“I can see that” she responded, “In the future, if you have a flare-up, I think you should try to come in twice a week to see if that helps,” she said.
“I can do that,” I responded. We both sighed, then CM spoke again.

“What do you expect from us, Steph?” she asked.
“Well, I want to come in here, exercise with The Guru, then come into this little room, lay on this table, get pain management treatment from you and, when you need to, you can tell me what changes or updates are happening with my rehabilitation or treatment.”
“That’s understandable…" she paused, "But I thought you wanted the Team Meetings.”
“I only wanted them because VP told me to have them. I worked as a Special Ed teacher for five years where all we did was have Team Meetings for high needs students. That was the ONLY way we got to all be on the same page about a kid. When it was brought up TO ME, I thought – hey, I get this! I may not understand my body or PT or why the surgery works for 85% of patients and did not work for me, but I GET THIS!” CM nodded her head in understanding.
“CM,” I continued, “Do you remember when I asked you months ago if you get time in your work day to fill out patient paperwork, review charts, make phone calls, or talk to other PTs?”
“Yes,” she recalled.
“You told me that you do NOT get that time. If you want to do any of those things, you have to stay late, keeping your husband and four kids waiting to eat dinner with you every night. I don’t think that is fair. CM, I am not just looking out for my best interests here, I am looking out for yours and for The Facilities, too. If these Team Meetings and Team approaches are not working, then I don’t want them.” She stopped working on my back and sat in thought.
“So you don’t want Team Meetings or goals or any of that?”
“If they don’t help anyone, then NO, I do not want them,” I emphasized.
“Oh….” She sat for a while in thought, then continued, “So I am hearing that you are comfortable with us talking about your treatment and results in-passing if we cannot have an official Team Meeting about your case,” I nodded in agreement, “I am hearing that you are not requesting goals or official Team Meetings after reevals as long as we find ways to still discuss everything and alter your Program to reflect the reeval results,” I nodded my head, “And I agree with you that we can have the President take better notes during the reevals and make sure to get those notes to the Team within a week. Is that okay for you?” I agreed.

“Okay,” CM continued, “well I think that the Team wanted to have a quick, 15 minute meeting with you to go over expectations.” I cringed. Like I said, I do NOT want those meetings. Why can’t I just talk to CM and she can talk to the Team? But I listened as she went on, “If we can’t meet this week or next, then I’ll just tell them what you and I talked about and we’ll go from there.” (It is week 2 and no word of a meeting, so I pray that I am in the clear...) ‘Thank God!’ I thought, but nodded my head, again.
“Are you okay?” CM asked me, truly wanting to know.
“Yes,” I said, “Are you?”
“Yeah,” she said and smiled.

There was more to the conversation than that. Finances were discussed. The “miscommunications” were deeper dissected. The apparent disapproval from The Team regarding my email was disclosed – with my rebuttal of “then why did EVERY Team Member give me his or her PERSONAL email address and have emailed me back and forth for the past year if they did not want me to email them?” CM's personal frustrations were revealed, about the Team, the Facility and my personal reactions. It was threatened that I should go to a new PT Facility. I called her bluff and asked if The Facility wanted me to take my business somewhere else and made it clear that if I was not “wanted” or if they couldn’t treat me, I did not want to be there. Then she told me she wanted me to stay... The CM explained that since the President has the most experience, she wants her to still reevaluate me so that she can get an outside opinion about my treatment. I agreed, as long as they discussed my appointments with the President within a timely manner. Eventually, all of those “kinks” got worked out…

Additionally, I knew that my insurance company pays a great deal of money YEARLY to The Facility. Based on my calculations, my business alone covers the entire salary of one of their Physical Therapists... If they like me as a person, that is great (and what I hope for)! But if the bottom line is money, then they would be fools to let a patient like me walk out their doors...

After talking to MANY other people about what would be best for me, I keep hearing the same thing:
- Every Health Care Provider will eventually have limits due to budget, management, insurance – you name it…
- Just because a Treatment is "promised" to you with good intentions, it may not always be carried through...
- Usually, Health Care Providers only like to be contacted (via email) when it is in regards to a Thank You letter or quick question; “long” letters are seen as threatening, even if you “fluff” them with appreciation…
- No matter how great a place is, there will always be something wrong with it; it’s up to the Patient to determine if that something wrong is worth staying or time to leave…
- No one – no matter how great of a support system you have – will ever fight for your health like you will…

What do you think? Did I make the right decision by trying to stay?

Upcoming blogs: I found an AMAZING letter written by a woman with an Invisible Disease who wrote to her family and friends what SHE needs from her loved ones – AND – I finally got the results of my reeval from February… Keep Reading!

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…