When a Lupangeezer Falls Down and Goes Boom

On February 23, 2015 I took the worst fall of my life. My entire body felt the pain, however it did not appear as though I had broken any bones or damaged any internal organs (it did take a few weeks for the surgical site on my left kidney to stop screaming). Some portions of my brain were clearly shaken and stirred. At least partially for that reason, I did not get the first x-rays until April 20 and then an MRI on April 24, 2015.  The x-rays indicated no fractures or dislocations. In other words they agreed with the call I made immediately following the fall, the call that sent me to urgent care instead of the ER.

The x-rays did explain the continuing pain: arthritis and osteopenia. At the moment my right hand and my right shoulder are, according to the “pain gate” in my nervous system virtually useless and the pain coming from them is being given the highest priority.

http://www.spine-health.com/conditions/chronic-pain/modern-ideas-gate-control-theory-chronic-pain

The right hand has arthritis in the thumb, the first carpal metacarpal joint, or MCM arthritis.  It also has arthritis in the triscaphe joint. The shoulder has arthritis in both the acromioclavicular joint (a.c.) and the glenohumeral joint. Of course,  I can refer you to images but you will need to come back for those.

 

Every x-ray and MRI  image shows osteopenia. Osteopenia! Me? Now that is scary and requires additional discussion.

 

When I talk to people about arthritis pain, they frequently ask why I don’t just take one of the many over the counter drugs that fight inflammation. Collectively these drugs are called nonsteroidal anti-inflammatory drugs (or NSAIDs). I was told to take them when I first started to experience the symptoms of arthritis as an adolescent.  One of their main side effects is ulcers. I cannot take them anymore because I have ulcers. There is a volcano in my belly that only requires a couple of ibuprofen to erupt.

I have had some success with topical NSAIDS. However the one that works best for me is not covered under my current insurance plan and is much too expensive for me to pay for out of pocket ($1700.00). My insurance will pay for the second best, which I think may not work any better for me than ginger oil.

For five years I used the opioid pain reliever, hydrocodone, to help keep some of the pain at bay. In October of 2014, hydrocodone was reclassified in such a way that getting it is more complicated. I experienced some of those complications when it took more than a month to reach a physician who understood that my description of my fall was not a ploy to score more hydrocodone. The story of the upclassing of hydrocodone, its causes and its ramifications for the practice of pain management is sociologically fascinating. It may even speak to some of the issues of social inequality that we will discuss in the Fall 2015 Seminar in Social Inequalities. However, I could not handle the additional complication and the fact that the pain management physician’s practice was not organized in a way to meet this change in the law that did not overlook the legitimate concerns of patients like me.  The upclsssification was in the works for a couple of years and it came as no surprise to the people in my field, there was no reason for it to become such a crisis in a pain management office that someone with new and legitimate injuries was blown off for more than a month.

At that point I was very glad that I had managed my use of the medication in such a way that I could stop taking it without withdrawal symptoms. My typical dose was 5/325 -3 times per day and I maintained at that level for five years, In other words I am not a big time “druggie” and my request for medical care because I suffered an injurious fall should not have been viewed in such a narrow context.

I was faced with the task of how to get a physician or even a nurse to take my increased pain level seriously.   I have serious concerns about the decline in properly trained nursing staff. My rallying cry has become where is my Registered Nurse? In order to break through the wall, I d

eveloped an opening statement. “I am not seeking nor will I accept hydrocodone.”  Yes, this is ironic. I suffer from chronic pain and have a legitimate need for the medication. However I am not addicted to the medication and I refuse to be treated like a druggie or a drug seeking patient. It devalues me more in a system where being black, female, and elderly is already depowering.

 

So basically I am telling the system to take the drug and shove it.  The problems with the drug do not arise from patients in my demographic category.  When the pain management system is done beating back those with true opioid addictions, and has figured out how to meet the needs of those with physiological dependence,   they will once again have time for patients like me. I am not addicted to the drug and I have not allowed myself to become physiologically dependent on it. Yet I still need pain management.

 

Refusing to take hydrocodone not only removes me from the unnecessary lines, the staff with their speeches so set in stone that they deliver the line, “I am not allowed to prescribe hydrocodone over the phone”  when  first of all, I already know that and my call has nothing to do with hydrocodone. Not only does it force me run away from those who are obsessed with the drug and are unable to hear anything else a patient says, it also forces me to look for relief from different sources. I am trained as a wholistic health and nutrition educator. It time for me to stop taking the pill shortcut and rely more heavily on my knowledge of foods and nutrients in the battle against the pain from inflammatory processes. I am now, for example, being much more deliberate in my examination and use of turmeric as an anti-inflammatory.

Because too many things were going on for an injured brain to process and translate into immediate action, I did not practice appropriate sun protection in March. When the exposure to sunlight was added to the pain and other stressors, I experienced the onset of the worst lupus flare in almost a decade. I did what I needed to do in order survive and went to urgent care and to beg for prednisone while waiting for an appointment with my rheumatologist.

 

When I first met this rheumatologist he told me that I did not have lupus. I think I might have been the first case of remission that he had encountered.  Remission does not mean that the disease is gone.  It only means that the symptoms are, for a time, undetectable. I explain my ability to achieve relatively long periods of remission as residing in my knowledge of what triggers my flares and then my ability to avoid them or to reduce their impact. This time I got three big triggers at once: sunlight, pain, and other stressors.

 

Stress is a huge trigger for me. I quickly took the pain from the fall and the stress of everything else going on in my life to the pool. My happy place is in my backstroke. I long ago modified the stroke of my right arm to deal with the arthritis. This, fall, however has brought us to the land of painful “snap, crackle, and pop.” I tried my modified backstroke once, I managed to get it to the noisy painful point and then, I could not complete the backwards movement nor could I bring it forward.  I did manage to roll to my left side and reach the wall using only my left arm. I have no backstroke in my right arm (no forward crawl either). Not being able to backstroke has now become a major stressor itself and that explains why the pain signals from the shoulder are being given priority over pain signals that are coming from other parts of my body. I am actually rather pleased about this because when the signals from the spine itself get through, I will be in tears, again.  Now that I have this lupus rash, I can’t even get in the pool (and I was just starting intervals, gosh darn it). So yes, I want to know if I can get my backstroke back. It isn’t a competition stroke it is a meditative stroke. There is nothing but the water, the roll, and the stroke and when the breath is properly integrated the rest of the world just goes away.

Therefore, I was very happy to have my first evaluation for physical therapy to be given on land on Tuesday May 5, 2015. I was ecstatic that appointments for three additional evaluations were set up for Thursday, Friday, and Monday. I was so happy that I accepted a 12:45 pm time slot for Thursday. Come Thursday, I start gearing up to face the noonday sun at a latitude of 37.33°N. I hate sunscreens and sun blocks. So when I, the most photosensitive human being that many of you know, face the sun at mid-day, it is with lots of clothes. I still have to apply sunscreen to any part of my body that is not covered with sun protective cloth and I must be aware of the florescent lights in the facility to which I am heading. If you have a science fiction imagination then you should visualize me as looking like a survivor on some post-apocalyptic earth when there is nothing left to protect anyone from the sun’s ultraviolet rays. I am hot. I am perspiring, the sunscreen is running into my eyes. I feel miserable but I am happy because forward progress is being made. And then it is not.

The service for which I am scheduled is not actually physical therapy and therefore is not covered under my physician’s order. They knew this on Tuesday. So why am I standing there listening to the someone babble apologies. This is not simply a waste of my limited time and energy, it is a serious threat to my health. In this  system  a physician’s order is still needed for each separate service and the physical therapist did me a disservice by scheduling appointments before she had those orders in hand.

I love my PCP. He will not be rushed. He is in the exam room with each of his patients for 30-40 minutes. And he is not changing his orders in the hallway between patients. He really believes in that FIRST DO NO HARM philosophy.  So he is going to ponder the extent to which the physical therapist’s desire to use the services of other departments is actually in my best interest. I fell in February. It is now May. I can see the “cool your jets look,” that comes over his face when he is rushed. I see that look when I try to self-diagnose and self-prescribe. He has no problem what so ever telling me to stop trying to do his job. So, we will get the order for services beyond PT when he had a chance to examine the request and make a decision. I can imagine how his staff responded to the idea that they should interrupt his meeting with one patient to talk about changing his orders for another.

He has a routine with each patient that involves a detailed interview. Your medication list is not in the hands of a CNA and neither is your blood pressure or pulse.  He takes your vital signs himself. He goes over your lab reports one line at a time.  He is not running from one patient to another every 10 minutes and his staff is not going to interrupt his session to ask about changing orders for a patient whose file he does not have in his hand. I could have predicted this on Tuesday.  But I was not included in the conversation about how rapidly he would get back to them.

But now I am standing here on Thursday and what was supposed to be my evaluation by a speech pathologist has now turned into an anger management evaluation. She wants to whisper.  I lack the ability to whisper.  I need to get out of the building.  So, I say, as politely as I can that they should simply cancel all of the appointments for which they do not have the proper paperwork, get the proper paper work and then give me a call. I don’t need to stand here for that. Dramatic exit, stage left!

Then, I have to humble myself, and go back inside and admit to one of the registration clerks that I have lost the card for my next appointment with Dr. Hill-Barlow, who is my psychologist.  I get the card. I photograph it with my phone and then borrow a stapler to attach it to my appointment book.  This is how I am handling some of the issues that derive from the trauma that I experienced when I fell. Being where I am supposed to be when I am supposed to be there has become difficult.  Being somewhere that I don’t need to be because someone else didn’t take care of the paperwork is very stressful. I have a telephone. If there is something wrong with the paper work, call me and cancel the appointment.

Once I get home, I realize that I know longer trust any of these people. So, I call and cancel the remaining appointments and make a new appointment with the person who carried out my initial evaluation. We need to start over. She needs to slow her roll. So, I am going to provide her with some additional information about me. We are going to make some plans that fit my needs. Plans that go at my speed. (Yes, I do believe that the trauma from the fall has slowed my processing speed. I do not believe that it has eroded the quality of my processing). She needs to stop “bum rushing”  me and she definitely needs to stop talking to me as though we are in a court of law where I am the accused and she the prosecuting attorney.  Everyone  should give up making plans that  bring me out into the noonday sun.  And when I do come out between 9am and 3pm, there needs to be a reason. Yea, I am still ticked about that. I will be ticked about it for a long time time. You endanger my life, you earn my enmity.

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4 thoughts on “When a Lupangeezer Falls Down and Goes Boom

  1. Well, I wanted physical therapy and I am getting physical therapy. I get five or maybe four physical therapy sessions. I am not sure that being in the room with Ms. Prosecuting Attorney is worth the effort of becoming a hostile witness and being held in contempt of court. It is probably in my best interest to simply avoid her. Of course, she managed to derail my occupational therapy. However, I refuse to be upset about that. When I am ready for OT, either my doc’s order will still be good or I will get a new order. I feel comfortable at this speed, more in control. I am really hurt and really sick. I am definitely not hunting or looking for a fight. And I have a new physical therapist. We work well together: no claws unsheathed no fangs bared. Cool chill, mellow. Southern, maybe.

  2. I appreciate the narrative of your struggle…it matches much of mine. If you do get out close to campus or near Robious on the south side… let me know. We can commiserate.

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