Angry and Frustrated

If you're a regular reader, you'll know that I'm a generally positive, happy person. I know this might come as a shock to some, but I'm still human! I have my share of pity party days and days when I'm angry or frustrated. Well, today is one of those days.

I've been dealing with chronic illness for my entire adult life, and I'm frustrated that so many in the medical community (and definitely the general public) are ignorant when it comes to dealing with "invisible" illnesses. Ask random people on the street what they know about ME/CFS, and you'll probably get blank looks or misinformed answers. I get even more frustrated when I hear from fellow patients whose stories of dismissive doctors echo my own.

I'm angry that I don't know what it's like to be a normal, healthy adult. I'm upset that I've spent over a dozen years and thousands of dollars searching for answers and relief only to be left with little to no relief, a lot less money, and even more questions.

I know I'm lucky that I've found a few awesome doctors who have become allies in my search for answers, but I've also had so many awful experiences with idiot doctors and nurses who think they know everything when in actuality they know very little. (One idiot doctor in particular almost cost me my life due to a misdiagnosis and ignorance of a particular medication's possible side effects.) I'm even annoyed that I feel "lucky" to have found good doctors. Shouldn't all doctors that we go to be good ones?

I feel hurt and frustrated when well-meaning friends and family tell me that, well, at least what I have isn't "more serious"/"fatal"/[insert something dismissive here]. "At least it's not [insert a more well-known illness here]" is equally dismissive and ignorant. What they're really doing is minimizing the impact my health has had on every single day of my entire adult life.

I'm also angry that very little progress has been made in terms of what we know about ME/CFS and other less common chronic illnesses. I started blogging in 2009 and had great hope that things would change for the better. Now it's 2013, and I have seen very little change.

When I started blogging, the iPad had not yet been released and people were still really excited about the iPhone 3G. Since then, the 2nd, 3rd, and 4th generation iPad models and iPhone 3GS, 4, 4S, and 5 have all been released and are old news. If we have phones that understand us when we speak and can act as personal assistants and speak back to us, why have we not made any real progress when it comes to ME/CFS and other chronic illness?

I still have hope that I will find answers to whatever is wrong with me. I'm not going to stop until I do.

No Skin Biopsy for Lupus. Blood Test Instead.

I didn't have the skin biopsy after all.

When I got to the doctor, she did not think the rash was "active" enough to warrant a biopsy, so she ordered an ANA blood test instead.  (For the record, my rash was not active at all when I first went to the dermatologist, which is why I didn't have the biopsy then.)  To her credit, she doesn't believe in doing a biopsy if the information obtained might not be helpful.

It turns out that the type of biopsy she wanted to do is called a "punch biopsy," which involves cutting out a small chunk of skin about the size of a pencil eraser (imagine a paper hole punch).  After that lovely image, I'm actually ok not having the procedure just yet.  I still have unpleasant memories (and a nasty scar) from my muscle biopsy. 

I still may have a punch biopsy, but it will depend on my ANA blood test results and if/when the rash comes back more strongly.  The doctor said I could just call the office during normal work hours as soon as my rash reappears and I'll get scheduled for that same day or first thing the next day (assuming it's not a weekend). 

The doctor also thinks it's entirely possible that my rashes are due to Polymorphous Light Eruption (PMLE), which some consider a kind of allergy to the sun; others call call it "sun poisoning."  (Here's some info from the Mayo Clinic.  If you're a science nerd, read the medical explanation on Medscape.)

If my ANA comes back negative or really low, I probably have PMLE.  If it's positive, it's probably lupus.  Either way, I have something.  Knowing my weird body, I'm probably allergic to the sun.  Fun times.

At this point, there's nothing for me to do except wait for my ANA results.  I should be used to waiting for medical test results by now, but I'm not.

I hate waiting!  

To be honest, I wouldn't mind a lupus diagnosis because it would give me something definitive that most doctors would both believe and understand.  I look so young and fit on the outside that I have a hard time getting doctors (and others) to understand how miserable it can be to live in my body.

I have so many random symptoms which are not typically associated with ME/CFS that I'm no longer convinced I have it.  On the other hand, I'm not convinced that I don't have it (can I use a double negative?).

I'm not scared of lupus.

A lupus diagnosis really wouldn't change much for me; it would neither cure me nor make me worse.  I would still live the way I'm living and feel the way I'm feeling.  The fundamental shift would be in the way others perceive me. 

More would believe me without question.

Looking for Lupus AGAIN?!

I know I still have to write an update on my nuclear DNA and CoQ10 tests, but something more pressing has come up that I thought I should blog about...

I'm getting tested for lupus again.

I've been tested for lupus at least three times before.  There's not actually a specific test for lupus, but I've had ANA and other related tests done.  The first two ANA tests (in 2005 and 2009) were completely negative.  The most recent one in late 2011 was mildly elevated (1:160) but not high enough with the right constellation of symptoms to warrant any kind of diagnosis.  You can read about my previous lupus excitement here (Lupus or Not? and It's Not Lupus, But...).

Unfortunately, this time around does not involve a simple blood test.  I am scheduled to get a skin biopsy tomorrow.  Ugh.  The reason for the biopsy is because for the past couple of years I've been getting random rashes.

At first, I thought the rashes were from something I was eating, then I thought they might be from my laundry detergent.  After paying closer attention to what I ate and switching laundry detergents, the rashes still seemed to come and go randomly.  Eventually, I realized that the rashes were showing up in the same places as my first photoallergic rash from 2011 (see September Already? July was Itchy.)

I complained to my allergist about my worsening rashes, and she referred me to a dermatologist because the rashes were not like my normal eczema.  I went to the dermatologist last month, thinking she'd give me a different topical medication or suggest ways to figure out what I'm allergic to.

To my surprise, the dermatologist asked if I had ever been tested for lupus.  I told her about my past ANA results, and she was intrigued that my last ANA came back a bit elevated.

Long story short, I'm getting a skin biopsy tomorrow.  In addition to looking for signs of lupus, they're going to look for another condition that has to do with being allergic to the sun (yes, you read that correctly).  Whee...

I'm nervous about the skin biopsy because I don't know how much they are going to take, if it will hurt, or if I'll need stitches.  My last biopsy was a muscle biopsy, and it was truly awful.  I realize skin is not as deep as muscle (I did learn something in 9th grade biology), but I really dislike not knowing what to expect.

Anyway, I'll keep you updated!  Must sleep now...

Boston, MA