Letter Says Find a New Doctor: Like they had to tell me that?

I skipped on over to the post office today to pick up my certified letter from the practice who employs the doctor who violated my daughter’s patient rights last month.  It said the following:

 Dear Ms. Ouiser:

As you know, you refused to follow the advice of our physician, Dr. Scott Washburn, when he was called upon to see your daughter at Forsyth Medical Center.  It is clear that there has been a loss of trust and confidence which is a necessary component of every physician-patient relationship and without which the relationship cannot continue.

Regrettably, this practice and its physicians are no longer in a position to provide you with medical treatment.  Please make arrangements for the transfer of your medical care to another physician within the next thirty days.  The telephone book contains a listing of the obstetricians and gynecologists in your area.  Once you have selected a treatment provider, please advise me of the name and address of your new treating physician and I will send a complete copy of your medical chart to your new physician.

If you need medical care within the next 30 days, you should seek treatment at any hospital emergency room.  Thank you for your attention to this important matter.

 Sincerely,

Rose H. Collins, Practice Administrator

Hmmm…. did they really think I would still go there?  I haven’t decided yet how I feel about the letter.  Today is 9/11 and my hubby is working at the firehouse, so my thoughts are elsewhere.  My first reaction was that this is probably retaliation for my having made a complaint with the hospital over the good doctor.  I even put in a call to patient services again to tell them about the letter and ask if that’s all I can expect to come of this… being dumped as a patient, that is. 

So there you have it folks… I took the initiative, followed the protocol for reporting patient rights violations, and instead of a letter of apology, I get dumped as a patient.  Yay healthcare system!

Could This Be Another One of Those Omens?

Day before yesterday, one of my neighbors knocked on my door and inquired about a piece of mail she found in her box.  Apparently, the lady who use to live here never changed her address and for more than three years now, we’ve still been getting some of her mail.  This time, however, her mail got stuck into someone else’s box.  The lady said she would stick it back in her mailbox.  It was one of those “certified letter” notices so we didn’t want to just toss it like we do all the junkmail.

Yesterday, the same notice winds up in my mailbox.  He, he.  Now had I had my wits about me two days ago, I would have just taken the notice from the neighbor and took care of it myself.  So today, I stuck it back in the box with bold letters saying “Does Not Live Here.”

The boy was mighty restless this morning so I decided we would go for a drive and give Granny a chance to sleep in peace.  She worked nightshift last night.  As I’m driving along country roads, trying to get at least a little lost as that’s always an adventure, I passed a mail truck.  From then on, I kept passing people on their way out to their boxes to get the mail that had just been delivered.  While I try to check my mail at some point every day, I have never been one to hoof it out to the mailbox before the dust from the carrier even settles.  After all, I never get anything that important.  I imagined what this must look like to all those aliens out there secretly monitoring earth.  A little white truck stops at a house and people tootle out to some sort of receptacle… strange ritual wouldn’t you say?

I did manage to get lost, only it wasn’t just a little lost!  I still don’t know how I managed it!  One thing that helped was the lack of road signs!  Knowing a street name or two would have been most helpful!  Suddenly, I hear the chime!  I’m down to my last 18 miles of gas!  Stupid me forgot to even look at the gas gauge before taking off.  Now I’m worried!  I’m in the middle of no-where, not sure how far the nearest gas station is, and I’m clicking the miles off at a pretty fast clip.  At last, I see an old filling station ahead in the distance.  When I pulled in, I wasn’t even sure they were still in business.  The pumps were like the ones we had 15 years ago, for pity’s sake.  Now I would have to take my son inside to pay and that means fighting to keep him out of the candy aisle.  Before I could get him unstrapped, an elderly gentleman appears and starts removing my gas cap.  Could this be?  Is there really one left?  Yes, Ouiser!  There is still at least one full-service station in the world!  So I started telling this total stranger what an idiot I am, cause let’s face it, I don’t really know a stranger and I’ll talk to anything with ears.  All in all, it was a most pleasant experience and I got directions back to the main highway.

As I’m pulling into my driveway, I notice the little flag on my mailbox is down so I toodle over and check my mail.  There’s that damn notice again!  I took it in the house and was going to write even larger letters about this person no longer living here when I noticed this must be a new one because what I had written before wasn’t there.  Oh… wait a minute… this one’s for me!  I almost felt excited!  The idea of something so important that it has to be sent certified!  Then I looked at who it was from…

Remember that doctor I had the run-in with over how he was mistreating my daughter?  The letter was from his group practice!  My curiosity is KILLING ME!  In a subsequent post about how doctors should fear patients using word of mouth to expose the bad ones, there was a comment suposedly written by Dr. Washburn advising me to get a lawyer.  I seriously doubt this doctor would be botherered enough by my blog to go to such extremes and figured it was someone posing as him.  Now I wonder, what if was him?  Could this certified letter be telling me of his intentions to sue?  At that time, I would have welcomed the chance to go public with this.  He couldn’t win a suit against me for libel because what I said was the truth.  It is only libel when you lie!  But having made my complaint over the phone and posted about my experience, I’m pretty much over it now and would rather not reopen the issue.

I’m thinking the letter will be a response to my complaint I made with the hospital.  It says that I can pick it up at the post office after 3 p.m. and that’s what I’m going to do.  I’ll be back later with a full report!  But isn’t it funny how the past few days have involved a certified letter notice and people checking their mail? 

Another Way to Explain My Fatigue?

Throughout the course of my illness, I have found it nearly impossible to convey to my doctors that I suffer from two very different kinds of fatigue.  First, I have the “general” fatigue in which I feel tired and ran down.  It is much like the fatigue that accompanies the flu or other viral infections.  What’s more, it is the one I have to contend with the most.  It can last for days, weeks, or even months.  As frustrating as it can sometimes be, it is, and I hate to say this, the least concerning.  The second type of fatigue, however, has not only been more difficult to explain, but it also one of the most difficult aspects of this illness to cope with. 

The second type of fatigue seems almost acute whereas the other type is more chronic.  Also, it is always accompanied by palpitations, shortness of breath, and chest pain.  When this first started happening, I was sent to a cardiologist to rule out congestive heart failure as the symptoms were so similar.  However, there wasn’t anything wrong with my heart.  After countless episodes, I learned that I wasn’t going to die from this and that simply stopping for a few minutes seemed to keep it from getting too severe.  Amazing what chronic sufferers just learn to deal with, huh?

The best explanation I could come up with for my doctors was this:  At times, my muscles seem to burn through their energy way too quickly.  I’ve likened it to running or weight lifting to the point that you start “feeling the burn,” except I can reach that point with very little exertion in as little as a couple minutes.

While that made perfect sense to me, the doctors would look at me like a dog looking at a stereo.  I’ve had one tell me that it could only happen if I had some genetic disorder at birth, in which case I would not have lived beyond a few days.  Another tried to tell me it was just anxiety.  And let’s not forget the one who said that simply can’t happen.  Well, fellow blogger Jacqueline sent me a link about ME/CFS that peaked my interest into learning more, ultimately landing me on the ME Society of America website where I found this information:

“When the capacity of cells to take up and release oxygen is impaired, the body shifts to anaerobic metabolism, wherein incomplete metabolism of glycogen leads to the formation of lactic acid, which further impairs oxygen delivery.  Brain, nerves, heart, skeletal muscles, and endocrine glands have higher requirements for oxygen and nutrient substrates, require more energy, and react to deficiencies with more serious consequences.” 

Finally, I not only have proof that what I’m experiencing can actually happen, but possibly even an avenue for doctors to explore!  The answer, for me, lies in how the body shifts into aerobic metabolism.  While I can’t say for sure that it is due to lack of oxygen, I feel absolutely certain that, whatever is triggering it, my body is sometimes failing to start the aerobic process.

I did some research and, if I understood it correctly, this is how it works:  Muscles store glucose for energy, but that glucose must first be turned into a fuel called ATP in order for the muscle to work.  This can be done in one of two ways: aerobic or anaerobic metabolism.  When we ask our muscles to do work, the anaerobic process is the first to respond.  This process if not very efficient as it can only produce about 2 ATP per glucose molecule.  Furthermore, it produces the byproduct lactate which in turn produces cellular acidosis (lactic acid).  This process can only provide about 90 seconds worth of energy before the muscles become affected by the build up of lactic acid.  In the average person, the aerobic process takes over in as short a period of time that is required for the heart to pump extra oxygen to the muscle.  Oxygen allows the glucose to be turned into 36 ATP per glucose molecule.  At the same time, the byproducts created through this process are water and CO₂.  Both of those are effeciently disposed of by the body.  The most striking part, for me, was how anaerobic metabolism can only provide about 90 seconds of energy because that’s about how much energy I have before my muscles start burning and tightening up.

Now, let’s apply that to my episodes of fatigue.  We’ll use doing the laundry for this one.  I can bend over, grab a shirt from the dryer, and by the time I get it hung on a hanger and start to lift it to the clothes rack, my arms are “feeling the burn.”  If I take a minute to rest, I can gain enough energy (or maybe loose enough lactic acid) that I can grab another shirt and start again.  Of course, the process will repeat itself.  So what should only take about 5 mintues tops becomes a 20 or 30 minute ordeal.  Thankfully, I’ve learned that just stopping whatever I’m doing and sitting idle for about 10 minutes to half an hour will most of the time snap me out of it.  There are days where it only happens once or twice, days where it doesn’t happen at all, and then there are  days where I just can’t break the cycle.  Imagine trying to do all your chores in 90-second-spurts of energy!

Another thing that struck me about the excerpt above was the mention of other organs that require higher amounts of oxygen.  When these episodes first started, I often tried to just “push through” and doing so would make me seriously ill.  My headache would worsen, my extremeties would “fall asleep,” I’d get extremely nauseous, and wind up practically crawling to bed.  It could take anywhere from a couple of hours to an entire evening to get over it.  Even then, the following days left me feeling flu-ish.  I have to wonder now if whatever is causing the problem with my muscles is somehow blocking oxygen delivery to other organs and the more I push, the more oxygen deprived they become.  Needless to say, I’ve learned to just stop and rest!

I’m so excited about this recent discovery that I’m probably going to take the time this evening to write up some letters to send to my doctors, asking what possible causes there may be for this.  I also have to wonder what role my hypoglycemia plays.  Dosn’t it stand to reason that if my body already has a glucose problem that it may very well manifest in other ways?  There are so many steps in the metabolic process that it might be impossible to find the exact malfunction, but I think we should at least try to look for it!

Missed My Diagnosis Shows!

I cannot believe I missed Mystery Diagnosis and Diagnosis X last week!  Oh wait… I do have that memory problem and all.  Maybe that’s not so unbelievable?  Luckily, I caught some of the Mystery Diagnosis repeats tonights.  The one that prompted this post in particular was the “The Man Who Turned Orange” episode.  This gentleman was a marathon runner whose first symptoms were fatigue and joint pain.  Sounding familiar?  Over the course of several months, he just steadily declined while all of his medical tests continued to be normal.  He went from weighing 165 lbs. to something like 215 lbs. from lack of physical activity and feelings of being depressed.  At one point, he began experiencing symptoms of palpitations and chest pain and I’m on the edge of my seat!!  They kept talking about his seemingly chronic tan, which I am far from having, so I found myself hoping it was going to be totally unrelated because, truth is, his illness was following the same course mine did way back when, except for the tanned-skin thing.  Then they mentioned that he was of Irish descent and I was biting my nails!  Sadly, his diagnosis was nearly clenched on the fact that the two joints that bothered him the most were his first and second finger joints.  DRAT!  Mine have never really bothered me that much.  His diagnosis was confirmed and my hopes shattered by a history of highly elevated iron levels and it turns out the gentleman had Hemochromatosis.  My iron levels have been checked a few times for anemia and they’ve always been normal.

Even though I wasn’t able to diagnose myself through this episode, he, he, I still felt like, once again, I’m not alone.  If you watch it often enough, you’ll soon learn that people with chronic and vague symptoms go for several years before getting the right answers.  It usually happens after their disease takes a serious and often life-threatening, turn for the worse.  Makes you wonder how many people won’t be able to tell their stories on Mystery Diagnosis because they didn’t survive it all.  The gentleman’s wife in the episode tonight said that her husband’s particular illness was most often only diagnosed at autopsy!  I’d like to see the statistics of how many diseases are diagnosed after a death which was preceeded by months or years of non-specific symptoms.  You know… like the ones we chronic people all told we have.  Non-specific in the medical world translates as “nothing to waste my time on.”

Should I ever actually get an accurate diagnosis, you still won’t see my story on Mystery Diagnosis.  You see, there’s another constant on the show… someone near and dear to the patient who tells the story of how worried the family had been for so long and how scared everyone was.  Who would be my “special someone?”  My mother?  hmm…. I could hear her now, “We basically ignored her complaints after the first year.  She can be quite the whiner.”  Or my husband?  “I was shocked to learn she had xyz.  She was never really that sick.”  Whenever I watch the show, I can’t help wondering if the person’s “support section” was always so supportive?

Maybe it is just me, but here’s what’s really bugging me tonight.  My husband came home dragging from his allergy problem (for which he refuses to take meds on a regular basis for) and went to bed rather early.  I was sitting in the living room watching the show tonight when he re-emerged from our chambers after a nice three hour nap and sat to watch the last 15 minutes or so with me.  Now I know while he’s watching this man, he is feeling sorry for him.  Here’s this fellow athlete of his brought to his knees, almost literally, with this horrible disease.  When they are reviewing his history and symptoms, my husband turns to me and says, “Maybe that’s what you’ve got.”  I told him that my iron levels have always been normal, he says, “oh,” and not another word is mentioned.  I had a few moments where I wasn’t sure if he was asking that because he really saw similarities or if it was out of pure mean-ness or jest.  He has been cruel before with his comments about my illness and my obsession with it.  I could just hear the future arguments in my head, “Well at least I don’t sit around watching medical shows trying to diagnose myself!”  Yes, he can be that mean!  And let one episode be about a patient who found their own answers on the internet!  The whole house gets in an uproar and starts poking fun!  “Yeah… that’ll be Ouiser!”

Then I started wondering how my family would react to my story if someone other than me was telling it.  What if one night they actually do have a woman who has the exact same thing I’ve got?  When they finally see how devastating it is to someone else, will it change their minds about it?  I mean, here’s my husband, feeling really bad for this man he’s never met and his having to deal with joint pain and fatigue, but seldom shows any degree of compassion for me when I complain of the same issues.  And let me remind everyone, those two things are just the TIP of my iceberg!  What is it that makes me any less deserving of his sympathy?  I may not have been a marathon runner, per say, but lost quite a bit, too.  Even as sick as I am now, I don’t sit here and twiddle my thumbs.  Maybe that’s my problem!  I just don’t act sick enough!  But if I were to allow myself to act like I truly feel, I’d be right back into that deep depression that even the marathon man spoke of.. not caring anymore whether I lived or died.  There’s a lot to be said about quality of life and it is a matter of life and death that I try to retain some of that quality.

Boy… this blog is just turning into one big rant fest after another!  But hey… I’ve been in a flare for how long now?  I’m going to be a bit frustrated.  Oh man… I just had a line from a movie my son has been watching pop in my head again:

• Mrs. Beady:  Randall, there is a cow outside.
• Mr. Beady:  This is a cow farm.  You’re gonna find cows outside.

That’s from Barnyard and I guess you will have to have seen it to appreciate it.  Here’s why it sprung to mind:

• Unsuspecting reader:  Wow, Ouiser you sure do rant a lot.
• Ouiser:  This is a chonic illness blog.  You’re gonna find ranting.