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

Giant Potholes in the Road of Life

There is a road not far from my house that has the worst potholes in the world. I'm talking about jaw-breaking, brain-rattling caverns that shock me every time I drive over them. Even though I try to avoid them, they are impossible to miss. The funny thing is that the road is in a really nice area with beautiful trees and charming homes.

Okay, maybe I'm overstating the size of the potholes...a little.

To outsiders my life appears perfectly lovely. I have a supportive family, a great job, a cute cat, a home, and look healthy on the outside. The reality is that I've hit a giant pothole in my personal life, which has shaken me to the core.

My husband and I recently divorced.

We separated a few months ago, and the divorce was finalized last month. When I got married in 2005, the D-word was never an option for me. I believed I would spend the rest of my life with this man. I would get healthy, and then we would have children and grow old together.

We were supposed to grow old together.

Unfortunately, the odds were against us. From what I've read, the divorce rate for people with chronic illness is higher than that of healthy people. My husband also brought his own mental and physical issues to the marriage, which compounded our challenges.

Suffice it to say our marriage is over.

What makes the timing of the demise of our marriage so much more painful is that I'm the healthiest I've been in a very long time (I'll write about it in a future post), our careers were going well, and we were finally reaching a point where we didn't have to worry as much about our finances. The future was looking bright.

Unfortunately, the future I envisioned for myself is gone.

I'm now in the process of regrouping and dealing with my grief. I'm seeing a psychologist to sort through everything, my family has been amazingly supportive, and I'm taking care of myself. I think I've been doing quite well under the circumstances, though I'm not entirely sure how much is denial and how much is me actually handling things.

Only time will tell, I suppose.

My mom bought me a magnet that I keep prominently featured on my refrigerator so that I see it every day. It says:

Everything will be okay in the end. If it's not okay, it's not the end. ~Anonymous

What's great about the road with the terrible potholes is that once I get through the really rough patch, there is a stretch of freshly repaired road. There are no potholes in that area, and it's a smooth drive for a while.

I'm looking forward to the next smooth part of my Road of Life. For now, however, I'm working on getting past this darn pothole.

Trips to Immunologist and Hematologist

In case you're not a regular reader or it's just been too long since I've talked about it, I have been on a mission in recent years to get answers.  I've gone from specialist to specialist for three main reasons:

1. to seek relief from something chronic (e.g., asthma, allergies, IBS, PCOS, etc.),
2. because a doctor/specialist referred me, and/or
3. to rule out conditions or find out if there is something wrong with me that can be treated...just in case I don't really have CFS/ME.

A lot has happened since my last real post. I've seen an immunologist and a hematologist in recent months, though not much came of the visits.  Well, that's not entirely true.  Something did come of the hematologist visit, but you'll have to read the rest of the post to find out (or you can just skip to the end). 

First, the immunologist.  I decided to see an immunologist to rule out major immune system problems because I've had problems in the past with healing (e.g., complicated tonsillectomy, complicated UTI), as well as unusual reactions to different things (e.g., drug allergies). 

I didn't realize how hard it would be to find an immunologist who saw adults.  Typically, doctors in the US who are allergists are also trained in immunology, but I wanted someone who focused on immunology first and allergies second.  I was hoping the doctor would have enough experience that he or she could spot unusual or less common conditions in adults.  Most of the doctors in my area who called themselves immunologists worked in pediatric departments of hospitals and only saw children. 

After searching high and low, I finally found a doctor who used to be a pediatric immunologist at a hospital before starting his own medical practice.  He now sees children and adults.  His office is about an hour away from my house, but I felt the visit would be worth it.  When I went to see the doctor, he took a thorough medical history and listened carefully to everything I had to say.  He took his time with me.  I think the appointment lasted well over an hour! 

The doctor explained that from my medical history and the way I described my problems, he did not think I had a significant immune system problem; however, he said something mild could be possible.  The doctor ordered a battery of tests, from the usual CBC to more specialized tests on my immune system that I'd never had done before. 

I won't keep you in suspense.  My immune system appears to be normal.  All the tests came back within normal parameters -- except for my red blood cells.  The abnormal results were expected because I have thalassemia minor; I am a genetic carrier for the thalassemia trait, which is a type of anemia.

Though I had told the immunologist that I have thalassemia minor, he was concerned about my blood test results and strongly urged me to see a hematologist for a deeper look at the way thalassemia minor might affect me.  The immunologist believed the thalassemia minor could be the cause of my fatigue. 

I was shocked because I'd always been told that thalassemia minor was symptomless. 

I made an appointment with a hematologist as soon as I could.  This doctor took a thorough medical history and ordered a bunch of tests to check out my blood and to determine what type of thalassemia minor I have.  I found it interesting that the doctor himself actually went to look a look at my blood cells with a microscope while I waited in the exam room. 

I'll spare you the suspense again.  Based on the blood test results, the hematologist said that he did not believe the thalassemia minor was causing my fatigue or other symptoms.  He said my blood cells looked good for someone with the thalassemia trait and that I was not particularly anemic. 

I was actually disappointed because I thought I was about to get answers as to why I've physically struggled for so long. 

One really good thing came from the visit to the hematologist, however.  He was fascinated by my health history and really seemed to empathize with me.  He revealed to me that during his medical training, he had once worked at the National Institute of Health in their rare diseases department. 

He said that the NIH has a program that brings in patients who have not gotten a diagnosis that adequately explains their constellation of symptoms.  The NIH runs about a gazillion tests on the patient and tries to come up with a proper diagnosis. 

The hematologist said that once I receive my nuclear DNA test results from the mitochondrial disease specialist, he would be willing to recommend me for the NIH rare diseases program if the results come up inconclusive. 

Wow!

I won't be getting my nDNA test results back for at least another couple of months, but this doctor gave me a little glimmer of hope that I might finally understand my uncooperative body.  It's important to note that there is no guarantee that I would be accepted into the program even if recommended by this doctor, but I was touched that the hematologist took me so seriously and understood my need for answers.