I’d Rather Have Chlamydia.

 

The week of October 5, 2014, I had yet another stay in a veteran’s hospital with another weird diagnosis.   It’s only a matter of time before I recognize  my case in an edition of Scientific American’s Mystery Diagnosis article.

Monday was busy, and Tuesday ended with a trip to the ER, presenting with neck pain and difficulty swallowing.  My neck felt like I had whiplash.  I hadn’t done anything to injure myself, and wrote it off as a strained neck from to much driving.  But something wasn’t consistent with pulled neck muscle.  It was like a bad episode of Sesame Street’s “Which One of These Things is Not Like The Other?”

I assumed it to was  allergies.  Which is stupid, because I knew better.  After twenty years as a medial anomaly, I just  knew better.  But I didn’t think anything of it until my cousin asked if I had any flu-like symptoms.

So I packed a bag, got in my car and drove myself to the ER.  I always drive myself because I hate taking people with me.  I end up feeling like I need to make them feel comfortable.  I get those worried looks, and I hate them.  It’s not their fault I view my ER visits as somewhat routine.  Mostly because I never let things get so far out of hand,  I couldn’t drive there.  I’d rather go to the ER and ‘cry wolf’, than ‘Suck it up, Buttercup’ until my condition becomes catastrophic.  I’m proactive that way, I guess.

I did notify my family I was going, which I hate to do, but I am also thankful to live far enough away they can’t just jump in the car and come to the ER.   Not because I want to leave them out, I just hate not having answers to their questions.  I view ER visits as fact-finding missions, in addition to emergency care.  I’ve been doing this 20 years now, and a trip to the ER is just normal to me.  Not because I have fallen through cracks in the system.  It’s because whatever the complication,  waiting for a doctor’s appointment in a specialist clinic, held once a week, is usually  not an option.

My greatest fear of living in Long Beach since the beginning of the 2014,  is that things might get so bad, an ambulance might be needed one day, and I would not be taken to a facility that is equipped with doctors who know how to treat a patient with scleroderma and sarcoidosis.  Instead, I would be taken to the Long Beach VA, for another botched diagnosis.

The  ER in West LA, appeared to have their act together.  Well, except that  ER nurse profiling me as a drug addict.  I made sure to tell his supervisors, but that’s a whole other post.

Back to the ER:  First, using a CT scan with contrast, observations of signs and notation of symptom,  I was diagnosed with a retro pharyngeal infection.  well, sort of- it was worst case, but there were missing symptoms specifically a fever and evidence of an abscess.  Luckily, I was fortunate enough to work with a team of doctors who were interested in answers, and getting them correct.  So, they followed the evidence.

I thought when diagnosed wasn’t  as bad as a progression in scleroderma or sarcoidosis.  Of course, it is a very serious infection that could be fatal if not treated in time.  But the doctors were a little puzzled.  I had swelling, but no fever and no sign of an abscess, which are both criteria for diagnosis.  I was still treated with antibiotics until the diagnosis could be proven otherwise.

I was seen by an ENT, who then requested a second CT scan with contrast, and later, that diagnosis was changed, thanks to the very capable rheumatology department and lucky me, my attending doctor in the hospital was a rheumatologist.  I think she is also the chief of rheumatology.  The diagnosis was changed to calcium hydroxyapatite deposition in the periarticular soft tissues of my neck.  In English:  Calcinosis in my neck tissue, specifically the tendons.

And there was a treatment.  And of course when the in-patient doctor told me the diagnosis, I of course asked to have the infection instead, because to me, anything scleroderma related in a new region of my body, no matter how treatable, in my mind is always the worst possible outcome.  Of course, I had a much better prognosis with calcinosis in my neck than an infection in my neck, but it was scleroderma and it took hours to get my head out of my butt over it.  (Seriously, what kind of an idiot would rather have an infection that a treatable symptom of a chronic illness?  Oh, right.  I’m that kind of idiot.) 

So I was given medication to break apart the calcinosis, kept on antibiotics just in case and my condition improved in about thirty-six hours.  I was sent home.  The very next day, I went to my high school reunion and had a blast.

And here I am seven days after discharge, feeling completely recovered, and packing my things to move to LA.  I wish I could stay in Long beach, but I cannot be guaranteed continuity of care at the Long Beach VA

Sometimes, I would like to have a gentler, familiar diagnosis instead of scleroderma.  A diagnosis other people have heard of,  like chlamydia.  At least that can be treated.  And when I tell people what I have, I would not have to explain it.  Everyone has heard of chlamydia, and that can be cured.

For More information:

Scleroderma Research Foundation 

Scleroderma Foundation

National Institute of Health

 

Scleroderma and Feet: Non-Healing Infections or Sores and Why They Need Immediate Medical Treatment

January 27, 2014

I just share this stuff.  Here is one of many events about how I know why medicine is called, ‘practice”.  

 

A Meeting of The Minds

January 23rd was my follow up appointment for my foot.   I am always interested to learn something new about how the human body works, what it does when the human body acts unexpectedly, and it was about me- so of course, I was riveted.  

In the treatment room were the orthopedist, infectious disease doctor and three other doctors who were there to learn, and me.  I’ve learned to accept my role as a test subject.  Not only does it feed my ego and distract me from worry, I am encouraged to learn and share with others who might find my experience helpful.   Plus, I would love to read about others who may have prevented a 45 day hospital stay, or loss of a limb but adapting to the situation.   (Share in the comments.  Go on, testify!  And enjoy an ego trip that will help someone else.)Back on topic.


 

Did she, or didn’t she?

Did I really have osteomyelitis?  It was what I felt a very valid question between the doctors.  Less than two weeks after my discharge, I did not look like a patient who just spent 45 days in the hospital.   I came to my appointment dressed in jeans, Ugg Boots, a sweater and looking good.  I did not in any way look like someone who was ill or recovering, except for my knee scooter.  

 

I took both shoes and socks off.   I believe that during examination of  visible body parts that do come in pairs, doctors should see the “mate” for comparison.  Before I even heard the word, “scleroderma”, I had cute, Flintstone-ian feet.  That day, I presented my two Flinstonian feet for examination.    Really, my feet look pretty good for someone who has had circulatory problems thanks to Raynaud’s, for 20 ears and counting.  My toes are fused straight on the second knuckle of all my toes, but I can still wiggle them when I want to.  A tendon on the third toe on my right foot is so weak, the toe appears to be trying to twisting toward the second toe.  The orthopedist suggested I do the “buddy system” with those toes by taping them together to get that middle toe stronger and help straighten my twisty-toe.  What a simple solution.  I can’t believe I have never asked before.  What are we talking about?  Oh yeah, I almost lost my foot, but I didn’t.  


We had a look at those feet-ies. 

So the doctors examined both feet, but of course focused on my left two small toes, which sat there looking healthy and nourished with blood.  I sat on the examining table as they congregated around the computer.  I don’t think they were baffled, I think they were surprised.  They looked at my hospital admitting MRI used to diagnose osteomyelitis, and there was doubt by these doctors I had osteomyelitis.  But after looking at my MRI after discharge, they said it looked like I had osteomyelitis.  There was discussion and debate between the doctors.  Repeating it will only confuse matters more because a conversation between doctors who are educated in what they do will debate. (Remember;  medicine is practiced, people.)  Not strong debate, like an argument.  I have every bit of confidence in you, reading this post and your intelligence.  But I do not trust my ability to repeat what I heard, or thought I heard.  It can become very easy for me to overanalyze statements.  In conversations where critical thinking is used and then overheard by another, it’s very easy to take points out of context.  For example, I could have walked away thinking I did not have osteomyelitis and I was over diagnosed.  No, it’s not that simple.  In the case of a remote possibly of loosing my foot, I want a doctor to err on the side of caution.  A wait and see approach has more often than not, resulted in serious damage to my hands.   And active or not.  Yes, I lost 45 days of my life.  Big deal.  I’m still here and intact, or as they say in the 1980 movie, Airplane!,  *”Free to pursue a life of religious fulfillment”.  


Long story short…

This team of doctors had in their office a young patient, with complicated diagnoses and complications stemming from the damage done by not one, but two very not as-rare-as-you-think, unusual diseases.  Having them together, that makes me an anomaly.  Every doctor in that room had never seen a patient with both at the same time, and there I was ready to walk out and ease myself back into an active life.  They looked at my MRI with showed there was no infection in my toes, but something was in my foot.  Not on the bones, but next to them, which they thought was inflammation from one of the two diseases I had, most likely the scleroderma.  Sarcoidosis effects my thoracic lymph nodes.  My feet had no swelling or pain and I was not on any pain medication.  This was not the usual outcome of someone who almost lost her foot to an infection.  What they told me is they thought the course of antibiotics stopped the infection before it could get inside the bone.  That sounded great to me and I’m sure a best possible outcome observed by those doctors, but now what?  

 

 


We wait, observe, then doctors review test results and see me in 2 weeks.

I go back again in 2 weeks. Before I go, I am to get x-rays, blood work to see if I have inflammation present, in addition to the normal CBC Chem Panels and whatever else.  I see the same doctors and we decide to where to go from there.  If I have any symptoms of infection, I was instructed to go to the emergency room and have the Infectious Disease Team paged.  ER docs are amazing and their competency is not doubted, but this anomaly must have no delays in treatment by the Infectious Disease Team.  It really does make this anomaly feel special.  (See what I just did there?  I found a way to feel all warm and fuzzy about my medically complicated ass.)


You may be wondering, “But Karen, how does your ego trip help me?”

Well, if you take anything away from this, I want you to not hesitate to go to a doctor or emergency room if you have an infection in your own foot.  If a treatment doesn’t work, don’t “wait and see” if symptoms do not improve.  Waiting only gives an infection more time to get closer to your bone.  Once it gets into your bone, it can get into your blood.  Make no mistake, if you wait and it continues, you will loose your foot or possible have a life threatening infection in your blood.   


But Karen, I cannot afford to pay for medical care.

Maybe.  But can you afford to be rushed to the hospital by ambulance after collapsing from an infection in your blood?  Can you afford to die?  Look, we all know I get socialized healthcare from the Veteran’s Administration,  but medical costs are not the only cost of a hospital stay.  Remember, my car did get ticketed, towed, impounded, then repossessed by the finance company because the impound fees were about to exceed the value of my car.  The second week I was in the hospital I had a choice.  I could leave and go sit in a courtroom and fight this, putting my foot at risk of injury and speeding up the infection process, or sit still and use my energy to save my foot.  I can always get another car and any bad reporting to my credit agency scares me as much as a fly in the room.  My past is filled with drama stemming from a lack of money.  Money comes and goes.  When feet go, they are gone forever.


Go and get care.  Your life and those who love you, depend on it.

I see statuses of people who are talking about an ongoing health problem that can quickly escalate into a life threatening health condition that could have been prevented with early intervention.  The #1 reason people wait for medical treatment?  Money.  I’m not going to lie and make it pretty.  I have been through a bankruptcy, continued horrifying credit and now repossession of my vehicle, as result of pushing aside those responsibilities for time with my son and doctor’s appointments that conflict with appointments at the DMV, or unexpected complications that put things like parking tickets or paying for my cable TV in the back of my mind.  I have skipped a meal or two in the past to do be able to do something fun with my son, or pay for gas money to go see him.  That no longer happens because doing so, puts my heath at risk. So I cut corners elsewhere.  


Still not convinced the sore that won’t heal doesn’t need attention?   

While in the hospital, and since my discharge, I have heard stories from amputees and family members of amputees with similar stories that began like mine: a swollen, infected foot.  At the time of my infection I had no open sores, buy many talked about how they, or their loved ones had open sores and did not seek treatment.   I have talked to so many people I cannot give you an accurate count.  So, don’t take my word for it.  It probably won’t take you long to find someone near you who either knows someone or has lost a limb to an infection that was not treated until it was too late.  Don’t be someone who could have kept their foot with early intervention.


*Now, have a laugh.  

My sense of humor comes from a steady diet of classic 80’s movies as a teenager.  Please enjoy these clips from the 1980’s classic, Airplane!  Scleroderma, sarcoidosis, diabetes and anything involving a terminal, chronic, or life threatening illness and be serious and soul sucking.  Revive your spirit with some laughter.  If you don;t like the clip I present, find your own.  Laughing at what scares us, or finding something to make us laugh when scared only makes us stronger.


And something a little more recent, this classic scene from Tommy Boy.  With my limited range of motion in my hands, wrists and elbows, I find this scene especially funny.  


Both clips I shared are from the YouTube Channel,  Movie Clips.  Check them out and subscribe.  If Airplane & Tommy Boy aren’t your cup of tea, you will find something else there, I’m sure of it!  


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