Wednesday, March 18, 2015


Over a year has passed since I initially became sick.  No diagnosis yet. I am sleeping 12-14 hours a day to get maybe 4 hours of activity which includes a lot of sitting down, walking with a cane or shopping in my wheelchair.  I noticed that I had a sliver that turned into a freckle on my finger tip, Nurse Practitioner told me to make an appointment if it got bigger, then I noticed when I removed my nail polish that the same splinter like marks are under one of my nails.  So I looked it up on google.  Now before anyone *eye rolls*. Let me assure you that as a medical advocate, I know the difference between reliable and unreliable web resources, I also own medical textbooks with which I cross reference my Internet findings.  The markings are identical to splinter hemorrhagesas sign of severe cardiovascular disease, unless you have received trauma to that area recently, which I have not.  Now, had I not been experiencing extreme fatigue, tremors, weakness, shortness of breath, chest pain, among many other symptoms for over a year I simply would have shrugged it off, however taking into account that I have no diagnosis and we have not investigated my cardiovascular system as a possible culprit, I decided that it would be important to show these markings to my Nurse practitioner as quickly as possible.

This is what happened:  I didn't get her, I got a student. Who promptly told me my red rash was not a concern.  "What red rash?" I asked him.  I pointed to the "slivers" under my nail, which I had already told him was my concern.  "We look for infection, or strange growth, these are fine." he told me in a very patronizing way.  He gave me the same neuro exam I get every time, listens to me breath a briefly listens to my heart, asks about my chest pains. I explain them to him.  He takes my blood pressure and says it is good (this is important to note for later). Here's the deal, we are both bias.  I am bias in that I have been dealing with the medical system for 8 years as both patient and patient
advocate.  I have watched many a Dr and nurse overlook things out of being too busy, too
inexperienced, too arrogant or all three.  I have watched life threatening complications arise from these mistakes, the good nurses and doctors recognize explain and apologize for their oversights.  Some lack the ability to realize that there was
an oversight, or the strength of character to admit it.  This student has dealt with patients who no doubt have freaked themselves out by going to numerous healthboards and other unreliable sources of information, he wants to help people with real health problems not waste time on ones prediagnosed by Wikipedia.  I knew this by his patronizing manner.  I would not be an active participant in this medical appointment, he would push on me what he thought, he would report to my nurse Practioner how the slivers were fine as they did not look cancerous or infected.  So it went, the stress question, then the stress comment, the anxiety questions, I assure him, I know what anxiety is, I have had anxiety.  I'm not suffering from an anxiety disorder right now.  "But your symptoms can be caused by anxiety."  He insists "I want you to have a psych consult." He tells me.  Then he wants to up my fibromyalgia meds which are mild anti
depressants.  "No." I tell him. "I get really sick when you guys up or change my meds, cymbal ta is working on my pain right now with very little to no side effects.  I am not upping it."  Then he
assures me in a once again patronizing tone.  "There is always an adjustment period when starting new meds."  This is when I began to get angry. "I dropped 2 dress sizes in a week last time. I'm already sick, I'm not doing that again." "Your choice" he tells me shaking his head.  This student is talking down to me, ignoring my observations of my emotional/mental state and he doesn't even understand the use of basic body language and it's effect on communication between caregiver and patient.  He left to talk to the nurse and I started to cry, out of pure frustration.  I don't want to be sick I am sick of being sick.  I'm missing out on important things with my children. This is the first non-vague symptom I get, and I can't even tell him what I think it is or why because all it will do is reinforce his diagnosis of general anxiety disorder.  He came back with a questionaire for GeneralAnxiety Disorder,  which is like 9 questions.  Really?!? That's all it takes to diagnose GAD?  Plus the questionnaire leaves no room for disease symptoms, as if the only reason I could be possibly
be irritable would be anxiety, not the fact that my legs are sore and I am unexplainably exhausted, not hiding to stay in bed but actually diagnosed by my sleep specialist as truly fatigued.  Then he wants
to put me on a larazapan type anti anxiety med.  "It makes me lethargic." I told him. "I spend too much time in bed as is. I'm not taking those."
"But it will help with your anxiety."
*face palm*
Finally he asked me what I am worried about.  I explained that my symptoms are worse, that I need a wheelchair to grocery shop because I get so tired, dizzy and my knees give out.  I'm worried that there is something wrong with my heart, with the way my blood moves, I'm worried that I am sick and we are not looking at all the possibilities and I am missing out on time with my family.  I don't want to be sick.  I want to get better. Then we went back over how tired I am, Scott mentioned my iron was low, then the student said he would put together some blood work to look at that, he left, spoke with my nurse Practioner and had ordered an ECG, a mobile ECG for a few days a cbc, a test
for diabetes and a few others.  I agreed to the psych consult to prove once and for all I do not have an anxiety disorder, so that we can move on to my real diagnosis. An hour and a half, that is how long that took.

He was so sure that I had anxiety he overlooked the proof that I do not have it:  My blood pressure was normal. Let's take a look at this situation from the view of a caregiver who has read my notes.  History of sexual and physical abuse by men in positions of authority.  Trauma caused by male doctor cutting into genitals without pharmaceutical pain relief, a preference to female caregivers.  She arrives to see that instead of her nurse she has  a male she barely knows,  he is examining her,  touching her  and her  blood pressure is fine.  Her heart rate is fine.  Someone who is suffering from GAD with my background would have a rush of epinephrine in a situation like that, her bp and heart
rate would jump considerably, as cymbalta is not a beta blocker.  While I was putting on my boots my
nurse practitioner came out, part of me wanted to show her my finger nail and talk to her about it, but not her part of me thought; What's the point? Here's what I learned, if they are going to treat me like I'm  crazy anyways, I might as well just tell them what think it is right away rather than waste so
much time.