My Blood Just Might Be Slightly More Interesting Than Yours

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Vast knowledge makes you strong.  A little knowledge is a dangerous thing.  My dad used to say that last bit.  And it follows that if you believe something, it is very real in its consequences.  So if I believe my left foot is possessed by satan I might be inclined to cut it off.  Even though my original notion was probably wrong, I still end up hopping about on one foot.

I’m sure there’s a miraculous point in there somewhere, although it could be simply a tangent my brain took off on when I remembered my great love of medical dictionaries and encyclopedias in my youth.  Those books have been replaced by Google.  I had a mothers medical book when my kids were small and was able to diagnose them with every childhood affliction going.  Now there are millions of new conditions so I have great empathy for todays parents and their boggled minds.

I still research diseases and random symptoms and come to wild conclusions.  Then I go to a real doctor to be assured that I am not in immediate danger of dropping dead.  So far they have all been very accommodating.

The condensed version of my medical history is just as likely to lull you in to a coma as the detailed one, so I will skip over both of them and jump right to the diagnosis.  IgG4.

Yes, of course, I could not have something mundane and ordinary.  IgG4 is a rare systemic fibro-inflammatory disorder.  Here is what I know about it, even though I have googled these facts and realize you are not supposed to blindly believe everything you google.  Hasn’t stopped me yet.

Immunoglobulin G is an antibody found in blood and extracellular fluid which controls infection of body tissues.

By binding many kinds of pathogens such as viruses, bacteria, and fungi, IgG protects the body from infection, neutralizes toxins and helps maintain food tolerance by the immune system.

Inflammation is a result of infection.  

Okay.  The original specialist I saw no doubt said all this to me because he wrote it all in a report which I didn’t see until very recently.  Two years later.  All I heard was NOT CANCER blah blah blah.  He said he didn’t know the cause of the infection or the inflammation, gave me heavy-duty antibiotics and then a course of prednisone, and since neither made any difference suggested we forget about it.

The inflammation never went away so my doctor and I thought a follow-up visit in a little over a year would be a good idea.  Same clinic, different doctor, and it’s like he never read my file and started over again with all the same tests.  Eventually he didn’t know what to do with me next and referred me to a lung specialist.  I learned more in that one visit to them than I figured out from him in six months.  They are the ones who showed me the original doctors report.  They sent me for blood tests and then referred me to a hematologist.  I saw her on the 3rd of August and she was wonderful, even though she sent me to a lab to have seven more vials of blood taken so they can analyze the hell out of it.

Her diagnosis, unless she finds anything new, IgG4.  Treatment for now – none.  Steroids could cause more problems than they solve so no point in going that route yet.

The inflammation hasn’t spread much except to a lymph node behind my esophagus and a couple in my lungs.  Any organ in the body could be affected.  It seems to be a little unpredictable.  Fibrosis is a possibility.  Not a lot of studies have been done on this yet and there are differing opinions. But really, I am done losing sleep over it.  Skin rashes and thyroid problems and type 2 diabetes are all related and I remember saying once I thought whatever was going on was a systemic thing and holy crap, I was right.  Maybe everything is systemic, I don’t care, I still think I’m smart.

On Wednesday I’m going to see a dermatologist on the hematologists recommendation.  Then I would like to do what the original specialist suggested and forget about it.

How’s that for a plan.

 

Grabbing Life by the Balls

The Big C is a television series I’ve been watching on Netflix.  Is this not the absolute best way to watch these things – having the power to skip all the intros and the credits and cut to the next episode with no commercial interruptions?    Although I rarely watch anything on tv anymore, I guess you could call this a condensed version of doing just that.

Thinking it was a movie when I first clicked on it turned out to be a happy accident because otherwise I wouldn’t have started watching it at all.  Days later and almost to the end of season 2, I’m still hooked.   So I suppose it’s safe to say I like many things about it.  The acting, the writing, the portrayal of not one but several messed up lives and how they intertwine.  Some of the situations seem a little too contrived, but the excellent acting always saves it.

After having listened to bits of the theme song a dozen times I was compelled to hear the whole thing.  And I’ve come to love it too.

Wikipedia  has a well detailed article on the premise and cast here .  The show is into its third season, so they must be doing something right.

Every person living with cancer or close to someone fighting the disease has a story to tell.  Some of us have been given a heads-up on how long we’ve got to get our shit together affairs in order.  Most of us think we have forever.  But the only thing for sure about the life we’re living is that it ends.  You take the life you are given and you deal with it.  It’s the living and the dealing that make you who you are and your life what it is.

Grabbing life by the balls seems to me like one of the best options we’ve got.  So let’s just do that.