And Back Again…

Now that we are all clear on Informed Consent, we know that is a huge part of self-advocacy. It’s also part of obtaining a diagnosis. Or a few.

However, even armed with knowledge that you have a say in your medical care and what you are willing (or not willing) to go through, it is only the base you stand on when it comes to obtaining a proper diagnosis.

As a nurse, I am fortunately (or unfortunately) armed with a bit more knowledge regarding anatomy, microbiology, pharmacotherapeutics, procedures, etc. This conveys into a trust with any particular physician. In my case, it was initially unfounded trust. Hey, it happens.

After I fell, I went to the closest emergency room. After an x-ray that was “normal”, they referred me to an orthopedist. I had already had a run in with one of the ‘big’ ortho groups in the area after my daughter injured her ankle. I also had a run in with a different group after my consent form for an arthroscopic procedure on my LFET knee was written for my RIGHT. (I probably should have discussed this in my last post). So, needless to say, I felt slim on options and I hadn’t necessarily heard anything negative about this guy. {NOTE: as a nurse, my definition of “negative” about a physician centers on medical ability more so than bedside manner}

Initially, I didn’t have any trouble with the guy. He ordered an MRI (totally appropriate). He wanted me off of work until after the MRI (also appropriate). I worked at a relatively small assisted living facility at the time. By small, I mean we had a total of 4 nurses…and we were currently short one. The facility itself was 2 floors with an additional single level in the back. Overall, it has approximately 150 rooms. I NEEDED to work. My residents needed a nurse there and there wasn’t enough to go around. With that necessity discussed, he wrote minor restrictions so I could work (yay for communication!). I left with an ace wrap, a return to work (with restrictions) note and crutches as needed. A good initial appointment in my mind.

 Due to an insurance snafu at work (more on that in a future post), I ended up working for a month before the MRI. This equaled about 250 hours on my feet. Yep. 250 hours. I used the crutches to get from one side of the building to the other. I used some crutch covers I had gotten for my youngest in 2006 when she broke her leg. Since there was pockets in the covers, I would put the nurse’s cellphone and any little items I needed to take back and forth in the pockets. My health care coordinator (assisted living’s version of a director of nursing aka, my boss) had scheduled an additional medication tech to assist me to reduce my ‘walking/upright/on my feet’ hours. Some days it helped and other days it didn’t. I would be barely able to move by the time it was time to clock out. Once I would get home, my knee was so swollen you could see imprints from the neoprene sleeve I had on.

Orthopedist's drawing of my fracture

I *thought* it was simply another meniscus tear but it was a fracture of the patella (kneecap). It was what is referred to as a “non-displaced” fracture, meaning while there was a break in the bone, it still stayed together. All that was required was to wear the fancy brace and stay off it.

Except it hurt like hell with the brace on. So I called the ortho. He had me come in for an adjustment. That lasted until I removed it for a shower. Once I put it back on, it wasn’t long before the pain increased again. So I called the ortho. He had me come in for an adjustment. That lasted until I removed it for a shower. Once I put it back on, it wasn’t long before the pain increased again. So I called the ortho. At this point the only thing they could do was put me in a full leg immobilizer. Which would cost more money. Ugh.

I decided to do the only thing that could be done…I stayed in bed (except going to the bathroom) with my leg straight without the brace. If I needed to go to anywhere that was too long to hop to, I put the brace on.

It wasn’t long before I noticed when my right foot slid over my left ankle, it tingled. Just for a second and it seemed to have to be a particular area to be touched. But around that time, I also noticed my foot felt really cold. So I started keeping one of those soft aloe infused spa socks on it.

Next came the vice around my thigh just above my knee. Now, by the time this began, I was allowed to walk wearing the brace, I was in physical therapy and there was even a bend to the knee in the brace. It was a small bend, but my knee and I both knew it was there.

I had been in the ortho’s office multiple times by this point, in addition to discussing the issues with my physical therapists. My ortho seemed unphased at all. Like this was normal. The nurse in me knew it wasn’t, the patient in me trusted the doctor. I went with the nurse in me and insisted on another MRI.

Things were about to get interesting.

It all starts with one step.

Take A Step Back

With any diagnosis comes challenges and sometimes more questions than answers. As an adult, when you have a cold, you tend to know what to do. When your baby gets a cold, suddenly you are clueless. This cluelessness also applies if you are diagnosed with something you have never heard of before or have no idea how to manage. So many questions pop in your head you have no idea where to start. So you talk to your friends, your family. They bring up more questions! You hit the computer and Google it. Now you have entered the realm of what those of us in healthcare call a ‘google doc/doctor’. Nothing wrong with that in my mind, as long as you don’t hold everything you find as the full story. I say, google everything. Read all the information you can find. Compare information from different sites. Then…formulate questions for your medical team. Informed Consent is the meat and potatoes of your medical care and, as it so happens, is the main topic of this blog post.

Informed Consent.  You’ve heard it said, hopefully, many times if you’ve ever received more than a general checkup or you’ve at least seen it on a medical form that you have signed but, do you really know what it means?

Certainly you are not being asked to sign an Informed Consent every time you walk into a doctor’s office.  Should you be? I suppose that may eventually happen with the way things are headed.  Dang. I’m getting off topic.  At its core, an Informed consent is designed to ensure a patient has been informed of the benefits as well as the risks of a procedure prior to consenting to it, as well as any alternatives. 

By definition Informed Consent is a legal document prepared by a healthcare provider to obtain patient (or patient representative) permission to perform a procedure, admit into a facility (hospital, long-term care, etc.) or take part in a research trial. It is signed by the patient under terms of understanding the implications of what is being performed; where/why admission is occurring; what is being researched & the implications of the trial. Informed Consent is often used in legal cases (civil or criminal) to defend or prosecute the provider.

Seems simple, right?  You go to the doctor for an issue. Doctor decides you need an endoscopy. Okay. Doctor leaves and you proceed to the front desk to discuss scheduling it. Done. Well, in a fantasy world it is. Or perhaps if you trust your doctor implicitly. So then why do you need to sign a piece of paper? Your doctor told you what you needed. However, it is just outside the boundary of the intention of Informed Consent.

What really should happen is: You go to the doctor for an issue. Doctor decides you need an endoscopy. You and the doctor discuss why the endoscopy; what the expected results are; what the risks are; what other options you have (this is the one most frequently left out). Once that conversation occurs, you are informed, thereby able to consent (or refuse). Ta-da! Informed Consent. Doctor leaves and you proceed to the front desk to discuss scheduling it.

I’ve seen all too often (on both ends of the medical stick) the discussion part slides to the wayside. This happens under a variety of circumstances:
                As the patient, we go home and do our own research. Doing your own research is not a bad thing if you have above the general knowledge of anatomy and medicine, in fact, I encourage it. It allows for more discussion between patient and physician. That’s usually where the conversation ends.
               The physician, either overbooked or simply not aware of his/her own bedside manner, tells of his plan and leaves the room. Sadly, this happens far too often.
               When you return to the doctor/outpatient center for the procedure, a piece of paper (Informed Consent) is handed to you by the nurse and you are asked to sign. With the Informed Consent now handed to you by the nurse, you suddenly have questions. The nurse happily answers your questions to assuage your fears.  Except, that’s not the way it is supposed to be handled. By virtue of the design and considerations of the Informed Consent, all parties concerned should be involved in the process, predominately the physician performing the procedure or providing the service.
               In fact, from the nursing side of this, nurses are advised against offering further information regarding the procedure identified on the consent. This information should be expounded on by the physician. That being said, the nurse should ensure your understanding and bring the performing provider to the conversation if there is patient concerns or if the nurse feels as though the patient does not understand specific aspects of the procedure.
              

We all know that once we leave the doctor’s office, more questions arise.
               Write them down. If you have multiple or serious healthcare considerations requiring frequent provider visits &/or invasive procedures (technically, an IV is an invasive procedure but I digress again), carry a small notebook in your purse/glovebox to jot questions down. Or use a notepad app on your smartphone. Sometimes it becomes easier just to hand the paper with your questions to your medical team. Honestly, I don’t know how I feel about handing them my phone. Either way, arm yourself. As the procedure date gets closer, call your physician to either speak to them over the phone or make an appointment.

               Go ahead and google the recommended procedure. Often, the littlest details that matter to an individual get left out. You may also find that what you thought was a big deal, really isn’t. Again, take into consideration where the information is coming from. Is it a personal blog site (such as this one)? Information provided by the company that sponsors/invented the procedure? Is it a specific medical professional/company site in opposition/agreement with a procedure/medication? An independent research group? All of these aspects should fall into your purview when investigating your healthcare plan. Oops. Did I just say your healthcare plan? Remember that. It is your healthcare plan. And, while you may not have gone to medical school and you may not understand every medical term thrown at you from your healthcare provider or the independent google research you have done, it is your healthcare provider’s responsibility to explain it to you. Ergo…Informed Consent.

One of the most under-discussed issues regarding Informed Consent is when there are options that your doctor does not perform. Whether due to limitations of his/her training or certification; insurance issues; equipment availability; even personal preference, not every doctor performs every procedure that may be within their capabilities. Often, those options are not mentioned or discussed in much detail. On the topic of Informed Consent, all of the options should be discussed. Most of the time, we find out about these options after we get home and discuss the visit recommendation with friends and family &/or research the topic ourselves.

On the other side of the spectrum, you have the right to refuse the recommended procedure. In fact, you can order a stop to the procedure once it has started. You can rescind your authorization at any time. Of course, your healthcare team also has the option of refusing to continue providing care as well.

The key to all of this is communication. Do not be intimidated about speaking to your providers about anything. What you may see as horrible, they may see as an everyday occurrence and vice versa. Telling your child who doesn’t like fish that the meat you served is chicken, isn’t the same thing as telling your doctor you haven’t eaten within the timeframe you were told not to eat. Yes, you may need to re-schedule your procedure but at least you will have eliminated the possibility of choking on vomitus during or after the procedure.

In conclusion: Seek out as much information as you can before you consent.

It all starts with one step.

Talk the Walk

I left a few things hanging with my last blog. Not sure where to start, I am going to run with a comment that was left on my last blog about disability. *Note: My experience relates only to Social Security Disability. I am not an attorney and my experience may not be typical.

Social Security Disability Insurance (SSDI) can be a very frustrating process. There was a LOT I did not understand about the entire process, even though I thought I did. I’m not an expert by any means, but I figure it can’t hurt to share my mistakes and lessons.

My myth-understandings:

•     You have to wait until you have been unable to work for 12 months before filing. WRONG

      When I first looked into SSDI, I read that your condition must have lasted or be expected to last for at least 12 months. I, being blonde and girl, interpreted this to mean I could not file until I had been unable to work as a result of my injury for 12 months. What it really means is that your medical records must indicate your disability must be expected to last at least 12 months. If you are told the day you are diagnosed that your condition is expected to prevent you from working for at least 12 months, file online when you get home J

•      You can’t work at all in the process before/during filing or after approval.  WRONG

      The Social Security Administration (SSA) doesn’t care if you work so long as you do not make over what SSA calls earning Substantial Gainful Activity (SGA). For 2014-15, that amount is $1090 per month. So if you are able to work part time, do so without worrying about your SSDI claim/benefits.

•      If your doctor hasn’t released you to return to work, you qualify.  WRONG

       Just because your doctor hasn’t ‘released’ you for work doesn’t mean you meet a listing requirement.  While you may not have a release to return to work, it may simply be because your physician feels you need more time to heal and that eventually, all will be okay.  The Social Security Administration has what is known as a “blue book” that, in some measure of clarity (although not much), lists which diagnoses qualify for SSDI.  The diagnoses listed often need no additional requirements other than it will prevent you from SGA for 12 months or longer.  There must also be documentation to confirm the diagnosis.  Typically, this documentation needs to state the condition is “severe”. 

•      If you qualify for a ‘permanent’ handicapped placard/license plate, you qualify for SSDI.  WRONG

        These are two distinct departments: placards/license plates are determined by your state; SSDI is governed by Social Security Administration (SSA), which is a federal agency.  Each determines your level of disability a bit differently than the other.  While the physician certification required by your state to obtain a placard may be of assistance with an SSDI application, it does not equate an SSDI approval.  Along those same lines, SSA utilizes adjudicators assigned to each state to determine eligibility for SSDI. 

•      In order to get approved for SSDI, you NEED to have a lawyer.  WRONG

       If you are 50 (or over) AND meet a qualifying listing requirement, you may be able to be approved on your initial application.  Anyone can file an initial application online.  More information and a link to application can be found here: https://secure.ssa.gov/iClaim/dib.  Once the initial application is filed, it can take several months to hear anything.  Printing your application and submitting as many medical records as possible along with your application to your local SSA office may reduce the length of time it takes to receive a response.  If your initial application is denied, you have a few choices:
               1) You can file your own appeal
               2) You can hire an attorney to file your appeal
               3) You can re-file at a later date
               4) You can give up
If your application is approved, you can expect to get a letter outlining what conditions qualified you and how far back your condition prevented you from SGA, as well as what your monthly amount will be, when you will get that amount each month and how much back pay you will receive (and when you will get that). 

•      If you hire a lawyer, they will get 1/3 of the amount.  WRONG

       The SSA governs how much your lawyer will receive.  As of this writing, that amount is 25% of the past-due benefits you are due to receive, up to $6,000.  Note: this ONLY applies to back pay.  For example: You’re awarded $2,000 in monthly benefits and $10,000 in back pay benefits.  Your lawyer will receive $2,500, which is 25% of your back pay.  If however, you are awarded $30,000 in back pay, your lawyer will received $6,000, which is the maximum payment, NOT the $7,500 that would be 25%.  Your lawyer is not entitled to current monthly benefits.

•      Once you are approved for SSDI, it will continue for life.  WRONG

       The obvious truth is if your condition improves, you no longer qualify.  However, this may not be as simple as you have had more treatment/therapy/surgery/et. and you are able to improve your function or that your physician has released you to return to work.  Often, in fact most often, SSA will have scheduled re-determinations.  Usually this is done within 5-7 years of your initial approval.   SSA can (and sometimes does) perform a determination and decide you CAN perform SGA, even though you and your healthcare team determine you cannot.  In those instances, you should review your options based on the same format as if you received an initial denial.

•      You are in this alone.  WRONG

   There are many websites and forums that can offer assistance/advice/support through the application/determination process.  Seek them out.  Unfortunately, I found them too late to help much in my process, but my favorite one is http://ssdfacts.com/

I filed my initial claim online.  I did not include any medical records but I did list as many providers as I thought were of importance (note: anyone who has provided care from the Date of Onset {DOI} IS of importance, include them).  I fell under the first assumption and did not file until I had not been able to work for 12 months.  I also relocated to another state just prior to filing my claim, as a result, I was not under current medical care so there was a lapse in my treatment.

A few weeks after I had submitted my claim, I received a form from SSA regarding my work history.  I filled that out and faxed it in.  I recommend faxing because you have a date and time proving you submitted the documents as well as confirmation they were received.

A few weeks later, I received a call from my adjudicator.  He asked me a few questions about my abilities but mostly about my medical care.  Since I was between providers, he suggested the possibility of being evaluated by one of the Disability Determination Service’s (DDS) physicians.  Nice gentleman, but he was determining my qualifications for something that would offer some sense of financial security.  I was not referred to a DDS physician and a few weeks later I received a denial.

Between my initial application, the call from the adjudicator and my denial, I found appropriate medical care.  With that in mind and my denial in hand, I contacted an attorney.  I collected as many records as I could (I discovered SSA did not contact/collect records from one of my providers) and met with the lawyer who filed an appeal (in my state, it is known as a ‘reconsideration’) and I waited again.

It was a few weeks before I received a phone call from another adjudicator.  This one was more focused on my ability to perform daily tasks as well as my ability to ambulate and work.  Since my physician had prescribed a walker and my daughter was doing all the housework, errands and driving, the adjudicator made a decision on my claim quickly.  I received a call from my lawyer notifying me my case was closed but he did not know if it was approved or denied.  Two days later, my back pay was deposited in my checking account.

A few more suggestions:
               Sign up on the Social Security website.  Even if you aren’t filing for disability, you can gain access to your social security earnings record.  If you are filing, you can keep an eye on your claim.  This will also allow you to set up a direct deposit account (which I strongly suggest).

If you have any questions or additional experiences, please comment below. 

Good luck to all who are filing!

***NOTE: This is my own experience and based on knowledge I investigated on my own.  This should NOT be taken as legal advice.  I am not an attorney and have no legal background.  I am not responsible for any errors in legalities within this post.  File claims at your own risk with or without an attorney.

All content provided on this "Talk the Walk" blog is for informational purposes only. The owner of this blog makes no representations as to the accuracy or completeness of any information on this site or found by following any link on this site. The owner of iwalkon.blogspot.com will not be liable for any errors or omissions in this information nor for the availability of this information. The owner will not be liable for any losses, injuries, or damages from the display or use of this information.

It all starts with one step.

Forward Motion

Within each search result, there were only a few commonalities:  Reflex Sympathetic Dystrophy & Complex Regional Pain Syndrome. WTH???

Since I had taken this time off of work to take more nursing courses, I had textbooks, LOTS of textbooks. I grabbed every medical-surgical nursing book I had (yes, I had a variety of them-that’s what happens when it takes 20+ years to complete an associate’s degree) and looked up RSD & CRPS. Everything seemed to fit.

With my insurance figured out, an appointment with my PCP and now armed with this knowledge, I was ready! For what though? What I ended up with was not exactly what I expected.

I went to my first appointment with my new PCP dragging my daughter and her boyfriend in tow. Actually, I was probably the one in tow since I sat in the backseat with my leg up on the seat. They accompanied me to the exam room. Nurse took my vitals, then left. Doctor walks in and kicked my daughter and her boyfriend out. (Note this to be something worth advocating for)

Doc does an exam, concentrating on my left knee/leg. She tests my reflexes. Nothing. She leaves the room for a moment & comes back with some kind of tool. I’m told to close my eyes. Not sure what she did because I didn’t feel a thing.

Then came the verbalization of what she interpreted the exam to mean. She diagnosed me with RSD (Reflex Sympathetic Dystrophy). Let’s discuss:

RSD is pretty much a garbage term for “You’re in more pain than you’re supposed to be”. No one knows the mechanism in which this occurs or who is more at risk to develop it. All anyone can say with any certainty is that it develops after an injury or trauma – typically to soft tissues. Now let’s make things more confusing: there’s a different, yet similar, process which involves trauma or injury to a nerve known formerly as Causalgia, then later as Complex Regional Pain Syndrome (CRPS). See the difference? You may need some glasses or a microscope to really see the difference here, but there is. Got it down now? Good, let’s further add to the confusion: BOTH RSD & CRPS are now known as CRPS I (RSD) and CRPS II (CRPS).

Garbage terms is something I am a bit familiar with. My second son was diagnosed with a different ‘garbage term’ when he was 3 years old…cerebral palsy. I spent almost 18 years advocating for his medical care, I should be able to advocate for me, right? Wrong. Again.

Of course I’m not sure how much of my advocating difficulty has been due to changes in healthcare or simply my inability to see myself as worthy of an advocate. Perhaps the latter is where I need to start.

CAUTION! Confession below ↓

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I started writing this post a few weeks ago. I know, questions...
Q- Why didn’t I post it then?    A- I wasn’t done.
Q- Why didn’t I finish it then?  A- I was working on solving all the things that have come up.
Q- What came up?                     A- Keep reading…

I’m going to touch on what has been happening with details to follow in later posts.

I started physical therapy in mid-March, finishing mid-May. This was daunting both physically and emotionally. And more on this later.

I sought the help of an attorney with my social security disability claim that was initially denied. More to follow.

I was diagnosed with a few additional ailments. Therefore, I saw a few more specialists. Keep following my blog for more.

My oldest welcomed my new grandson! Pictures to follow.

My daughter got married! Maybe there will be pictures later.

I’ve been trying to figure out how to work and have been working with the IL Dept of Rehabilitation Vocational Rehabilitation Services. Probably will be a long post later.

I battled with insurance. You KNOW I will cover this.

Right now, I’ve had a long day. Which I will tell you about later.

It all starts with one step.

Two steps forward...

When we first begin to take a stand for something, we don’t necessarily paint a clear picture. We are still learning. Some say “One step at a time”, others use the “Baby steps” mantra. Whatever you call it, it’s learning. Education. Knowledge.

Why was I having so much trouble with my medical care? My second child had enormous medical issues and I had no problem vocalizing every little bitty issue to anyone (and everyone) in his ‘team’. I spent hours and hours researching his medical diagnoses. I subscribed to a magazine directed towards parents of special needs children (Exceptional Parent). I picked up catalogs filled with therapy equipment. I investigated what went wrong. I walked for him. Hell, I ran. When faced with a decision to choose between heart surgery or brain surgery, my argument was that I would not want to live with the restrictions my son had, why would I make him live that way. If I really felt this way, why could I do all that advocating for him but none for myself???

After months of limping and hobbling, dealing with a swollen, cold, tingling foot/leg and a painful knee, I needed answers. I investigated what could have went wrong and while I came up with a few scenarios, no one person/physician/company was at fault. It was an accident. I fell. My insurance wasn’t fully active. I had to work. My knee needed to be immobilized. All of those factors combined created the symptoms that I now have.

So I Googled. I Googled each symptom. I Googled complications of my specific fracture. I Googled my fracture and symptoms together. I Googled my nerve damage. I became a master searcher! Each symptom search resulted in several pages of possibilities. “Non-displaced patella fracture” resulted in a few pages; complications resulted in a few more. A combined Boolean search resulted in 2-3 pages. Figuring out what was really going on seemed to be the easy part. Now, to get a doctor.

Here is where I need to back up a bit.

In late February/early March, Alex and I had a long conversation about Tennessee vs. Illinois and where the future would be. He was stuck at his job. Promises of promotions ran empty. He wasn’t very fond of the college options and hadn’t made friends like he had in Illinois. Brittani was graduating and not sure the direction she was going to go. My parents were getting older and how could I work with the elderly population with the mantra “They all brought us where we are today and someone should be with them when they go.” and not be with my own parents? The love I had for Tennessee (and the love I had in Tennessee) weren’t what they used to be. In fact, the love in Tennessee and I parted ways 6 months after I moved down. My neighborhood was fast becoming a group of holier than thou raiders and my injury left me feeling very alone. Lonely. It was time.

I began looking at options and decided I would figure things in such a way as to purchase a home without a mortgage close to my parents but nottooclose. I headed up to Illinois to see what I could see. A week or so with my parents while having a realtor in IL and one in WI show me a few homes just about every day and I had narrowed my list. I still wasn’t sure so I headed back to TN for a bit, then returned with Alex a few weeks later. Alas, the house I was pretty set on went under contract while we were on the road back up. Not kidding. In the car. On 65 North. Dammit.

So Alex and I stayed in Crystal Lake for about 10 days. In between WI realtor days and IL realtor days, I studied and Alex visited with his friends. And I found a house. A foreclosure that needed a bit of work, but the floorplan was perfect. Location could have been better but it was close enough to WI that I could work there once I was done with school and could be licensed as an RN there. Or, I could work in IL with my LPN. Or, I could be licensed as an LPN in both IL and WI. I put an offer in & headed back to TN to pack. Over the next month, the house was packed up & put into storage (several), all the floors we re-done, the entire house was painted and ready to go on the market. We moved into a hotel in TN so the house would be empty and Brittani could work out a 2 week notice. Alex headed to IL a week before we did to look for a job.

All this activity was incredibly hard on my knee/leg. One of Brittani’s friends had relocated back to TN and needed a place to stay, so she stayed with us and helped pack up the house. Still…my leg was veritable toast most of the time. We also found out my son and daughter-in-law were expecting baby #2! Yay! And…oh man. The timing was better than #1 when my son left for Afghanistan less than a week after finding out Jess was pregnant but still only weeks before another deployment. And Jess is a brittle diabetic, now with a preschooler to run after as well.

I digress…And you can read more about the fixing up of my new home here: Paige One

Back to this huge learning curve. Oh yeah. I needed a new group of doctors now that I was in a new state. First I needed insurance. So I went to the good ole healthcare.gov site. I was referred to Medicaid but that took over a month to have policy information to take to a physician. Plus, I had to choose a physician. It was the start of the holiday season and I had help, so getting the house in order took a higher priority until the 1^st of the year. Then it started. The doctor I chose really didn’t accept Medicaid, contrary to what both the Medicaid and insurance plan’s websites. I selected a new doctor and made an appointment.

By the time of the appointment, I didn’t expect there to be any issues with the insurance. Well, I’ve been wrong before. Lots A few times. This time, they didn’t figure out the problem until I had filled out the new patient form, stepped on a scale, was escorted into a room and had my vital signs taken. No sooner did the nurse leave than she came back in to tell me they were sorry, but the insurance didn’t have this doctor listed as my doctor. Please take a moment to re-read the last sentence in the above paragraph……….See?? I did change my doctor with the insurance. Thus began my beginning.

It all starts with one step.

Step Two

With my medical records in hand and the hope for a quick return back to work, I headed to another ortho (I’m calling this one Dr. P). As far as orthopedists go, he enjoyed the same torture as just about any ortho and most certainly every physical therapist I have ever encountered.

When he was through with his exam, we talked about the latest MRI as well as some additional issues he discovered which were related to the ‘tingling’ on my foot. He noted some weakness in my left foot/ankle. He first wanted to have an EMG & NCS performed. He discussed the possibility of a back/spine issue. I had a back issue many years ago from toting suitcases, beach items, medical equipment, a toddler and a child in a wheelchair through the airport. This didn’t feel anything like that.

I was sent straight over for my EMG/NCS. I had an EMG once before so I thought I knew what it would feel like. I was so wrong! Although I do not remember (and most likely would never admit) screaming like that during childbirth, I screamed. And screamed. And cried. It was incredibly painful! Don’t let the google fool you…painful.

My return to Dr. P for the results was pretty straight forward. He recommended surgery for the meniscus tear with physical therapy to start the following day. I informed him I would, in no uncertain terms, NOT put myself through more physical therapy without pain medication. I was done with that nonsense. He obliged and began discussing the EMG/NCS results. I was not prepared for what he would reveal. I had nerve damage. Real nerve damage. He was ‘on the fence’ about referring me to a neurosurgeon for treatment/surgery. He was uncertain whether this damage would be permanent. This aspect would be a ‘wait & see’. Meanwhile, how about we schedule some knee surgery?

At the nurse/checkout desk, we discussed surgery dates and insurance coverage. (I should probably back up here…)      

While on my medical leave of absence from my job, I took my vacation time in short increments to allow my insurance premiums to be covered. By this time, my vacation time was long used up and I was paying out of pocket for my premiums at active employee rates. So we schedule surgery and I am on my merry way.

Unfortunately, someone at ADP made a mistake with my insurance payments. They included ALL the time I was on leave without deducting the payments made from my vacation time. In the eyes of this snafu, my insurance premium was not up to date, paid in full, so they cancelled it. Three days before my surgery. Somewhere, someone saw the steam coming out of my ears! I was hopping mad! Many, many, many phone calls between my employer, ADP, the insurance company and the surgery center over the next 3 days and all was resolved. So I thought. On the way to my surgery, I called the surgery center to verify. They were unable to verify coverage that one day before I was informed (by the insurance company AND ADP) had been reinstated and my surgery would be covered. Due to this, I was told I needed to pay $3800 PRIOR to my surgery in a few hours. How about “No” Charlie. I called Dr. P’s office to inform them and we turned around to go home. My surgery was not able to be scheduled for 3 more weeks.

Surgery went as planned the end of April 2014, a mere 7 months after my fall.

                 

I started physical therapy, as Dr. P. ordered, the following day. Torture. Pure torture. Thank goodness I had pain medication. Finally.

My therapy center was in the same neighborhood that we lived in, so at least it was close. My therapy sessions were scheduled around my youngest daughter’s school schedule or my son & oldest daughter’s work schedules. Most often it was around my youngest daughter’s school schedule. I hated that. I hated that I was unable to drive myself. I hated that I had to continue to depend on someone else. I hated the direction my life was headed. How could I stop it?

I had to think about ME first. Only, I had never done that. I was a people pleaser with passive-aggressive communication. I only spoke up for myself when I was already battered and on the ground. If only I spoke up sooner. Certainly that would make a difference. It did when I spoke out for someone else…it had to for me too.

My first attempt at ‘me thinking’ was my therapy. I became verbal about the pain I was experiencing during my therapy sessions and at home. This translated into inconsistent pain/ability. Only it really, truly was inconsistent. Some days I was golden. Some days I rarely got out of bed. Some days I was golden and then couldn't get out of bed (or vice versa). What was I doing wrong?

It all starts with one step.

Brace yourself

As with every fracture, there is immobilization. Even if you've been walking around on it for a month. So I was fitted for a brace and put on “No Weight Baring” status. Being the independent person I am, I asked if I could at least hobble to/from the potty palace. Doc agreed “Touchdown” weight baring would be okay. With that, I was ‘good to go’! Isn't it pretty??

It started pretty soon after…the cold, the tingling, the ‘my foot is asleep’. So I called the ortho office who wanted me to come in for an adjustment. I’m not sure if it was the adjustment or simply the removal of the brace for a few minutes but whatever it was seemed to help. Until it didn't. Which happened to be the next day. So, I called again. Went for an adjustment again. Okay, good. Nope. I ended up calling the office again the next day. I was then told the only thing they could do was switch me to an immobilizer temporarily and when I was ready for weight baring, I would have to return to the brace. The brace cost $185 (the insurance paid an additional $700) and I wasn't working so I was not very interested in paying for another system that would more than likely have the same results. I had a bit of experience with the immobilizers with my son. A LOT of experience actually.

My solution was simple: stay off my leg by staying in bed where I could keep it straight. Apparently the ortho didn't like that as he noted me to be ‘non-compliant’ in my chart. This was my advocate for ME start that I wouldn't realize the importance of for a few months.

I did wear the brace when I was unable to stay in the bed and used my crutches. Then later, when I was taken off non-weight baring.

I started physical therapy and discovered my knee was simply ‘not right’. Sure, the fracture was healing/healed but there was something more there. I don’t think I mentioned it but when it first happened, I thought I simply had a meniscus tear. I had one of those before and worked for several months before having surgery. This pain was more, a LOT more.

My physical therapist and I both insisted to my ortho to order a repeat MRI. Funny, a different radiologist read it and now there WAS more going on. Or was that all there to start with? Clearly a meniscus tear was present and ortho suggested injections. Or he could do surgery as a last resort. I told him “I am okay with ANYTHING as long as I am not in pain anymore!” This ortho who determined my issues with the brace equated ‘non-compliance’ then noted in my chart that I “did not want surgery”. Say what???

See, I had a meniscus tear and partial meniscectomy before. On that same knee. I knew after all the research on my first one the meniscus does not have a good blood supply and does not heal well on its own. Unless – it’s a small tear. This new one was not a small tear. It also was not in a good location to promote self-healing. I knew when the ortho was pushing for injections, I needed a second opinion. 

This was my true beginning of advocating for me. I obtained copies of my medical records and started researching other orthos. I already had some difficulties with another ortho group; when I went in for surgery, they had the WRONG KNEE on all the paperwork! Ummmm....no.

It all starts with one step.