I really had tried to consider all of the different possibilities of what was wrong with me. I spent a lot of time researching my symptoms, trying to figure out what the problem was. I considered allergies, black mold, lupus, anemia, fibromyalgia, chronic fatigue, hypoglycemia, mad cow disease, pesticide exposure... and so on. I would bring my theories to my current doctor and they would run tests to see if that was the problem. But answers kept evading me and my symptoms continued to worsen.
I had been going back to NJ fairly regularly to work in the greenhouses (the family business) during busy times. It seemed that my symptoms weren't so bad when I was up there, and so at the end of 2006 I decided to move back to NJ. I was only getting sicker and sicker in Florida with no end in sight. A favorite quote of mine is from Albert Einstein: "Insanity: doing the same thing over and over again and expecting different results." So I decided to make a change and hoped for something different.
I moved in with my sister (she might have been a big reason why I felt better in NJ - sisters are good for the body & soul). I started out by seeing a Rheumatologist in NJ, to revisit the possibility of lupus, but the blood work was negative. Then I saw another doctor (a general practitioner - GP) in NJ, highly recommended by a few people. He referred me to an infectious disease doctor. I saw him, explained my medical history and he did an exam and sent my blood away for testing. Unfortunately, he did not take any insurance so this was an expensive visit. I do also remember having my worst ever experience with a phlebotomist (the person who draws your blood). And believe me, I know a thing or two about how blood should be drawn. I had been poked and prodded and bled so many times, I knew it wasn't normal for the tech to put the needle into my arm and then wiggle it around until she hit the vein she was trying to find. Ugh.
Back to the infectious disease doctor... I saw him again to go over the results of the blood work. Honestly, I don't even remember this visit. I just know that I saw him 2 or 3 times, but he had no answers for me either.
I continued to see the GP that sent me to see the infectious disease doctor. He tested me for the Epstein-Barr Virus (similar to mono, often associated with chronic fatigue) and my levels were crazy high (that's in strictest medical terms). In all seriousness, when they test you for the virus, there is a certain number range they use. If it's below 100, it's considered a negative result. 100-120 is equivocal. Greater than 120 is considered positive. My result was 1884. Crazy high.
He started me on B12 shots. There is not a straightforward treatment for viruses, but he said B12 shots have been known to help people with chronic fatigue. I needed the shots every week so he showed me how to do it myself and wrote me a prescription for the supplies. It wasn't bad, and thankfully I've never had a fear of needles or blood or most things medical.
Again, I don't remember exactly what happened next. We went into our busy spring season at work, and that probably kept me distracted. I was popping Motrin on a regular basis so I could function. Without it, the joint pain was almost crippling.
Skipping ahead to July of 2007... I never used to hate going to the doctor, but by this point I had developed a strong distaste for it. I had spent countless hours in doctors' offices, to no avail. It felt like a waste of time. I was tired of being patronized and not listened to. And even the doctors that did listen to me had no solid answers. I reached the point of accepting the diagnosis of chronic fatigue and fibromyalgia. After fighting it for years, I was ready to accept that this was my life now. Fatigue and pain and headaches and depression were there to stay.
My paths crossed with a woman I had known most of my life. I shared a bit of the reasons why I was back in NJ with her, and she told me that she, her husband and her son all had Lyme disease and that I should see their doctor. She mentioned another family that I knew that also used this doctor. I thanked her and took the doctor's information, still undecided if it was worth another doctor visit. But let's save that story for the next post.
FYI, I don't remember many of the medical details but thanks to my handy dandy folder, I can fill many of them in. What folder is this, you ask? It's a folder I started keeping when I realized I wasn't getting any answers and I needed to start trying to figure things out myself. It has most of the blood work I've had done since that first positive ANA test, a list of the symptoms I was experiencing, along with other important medical info. It's about 2 inches thick. I spent a lot of time going over those papers, learning how to read blood tests and what all those little itemized lines were checking for specifically. I feel as though I could slide into a job in the medical field without much extra training because of all of the research I've done on my own (okay, realistically so not true). But it feels that way.
Until the next time, friends...
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