Getting Well

If you’re a follower of this space, and if you are reading this, you probably are, you will have noticed that I haven’t posted much recently. That little respite has come to an end, sports fans. I’ve learned a lot in the last four years, and I’ve decided it’s about time to share some of it with you! Because I’m that kind of public service gal!

But first, some catch up. You probably want to know, where’d Brenda go, and who the hell is Bee?

Now, now. Be patient. I’m going to save the answers to those questions for another post. We’re going to start back in April of 2015, when I was diagnosed with a neurological disorder, a pathology of the meso-limbic dopamine system. This disease is chronic and progressive, and if left untreated, it leads to a really ugly death. I had suspected it for years, and had had a couple of doctors want to take a good look at my symptoms, but I wasn’t interested. I wanted to believe that if it wasn’t diagnosed, it wouldn’t be there or it would go away or I could treat it myself.

But the symptoms got too bad to ignore. Depression. Weight gain. Insomnia. Night sweats, shaky hands, severe back pain. Confusion and memory loss. My eyesight got so bad, I couldn’t read. I lost my singing voice.  I was unable to get through a sentence without stopping two or three times to think of a word. Rapid pulse and tachycardia. Of course, I tried treating it myself, because hey, this is me! I know everything, and if I don’t know it, I’ll Google it! I flirted with different diets and even thyroid medication until finally I wasn’t able to function. I went to my primary doctor, the wonderful Mary Pickett at OHSU, and said, okay, test me. I’ll never forget one of the comments at the bottom of the first page of test results. “Abnormalities at the cellular level.” That got my attention. Maybe this isn’t a do-it-yourself project.

Mary agreed. No, she said, this isn’t something you can self-treat. You need intensive treatment and you need it right now, or make no mistake, it will kill you.

Needless to say, I didn’t want to start any damn intensive treatment. It meant that I had to quit working. I wouldn’t be able to do anything except pay attention to my health. I didn’t have time for this. I resisted for a week. Then I went to donate blood at the Red Cross, and the intake nurse asked about the irregular, rapid pulse. Oh, I said, that’s not anything to worry about. It’s just that I have this disease. She looked intently into my eyes and said, “You need to take care of that. My brother died of that condition yesterday.”

I went home and started making phone calls. Where’s the best place to be treated and who takes my insurance, because we’re looking at many thousands of dollars here? That was a Friday afternoon. By 5:00, I was on a wait list, and on the following Monday morning, I was admitted to a treatment program.

Three doctors. Monitoring blood levels four times a day. Medication. Special diet. A strict exercise and meditation regimen. Three support groups. I thought I would feel better right away, but actually, at first, the treatment made me feel worse. For six weeks, I thought I was going to die or go crazy. That’s not a dramatic statement from a classic soprano, it’s just a fact. Panic attacks, some out of a sound sleep at 4:00 a.m. Crushing chest pain, pretty much twenty-four hours a day. Severe fatigue, unpredictable mood swings, more confusion, more weight gain, worsened irregular heartbeat. The specialist I saw daily said to be patient, that I would get better, it just would take time. I stuck with it, because what else could I do?

My system healed, but slowly. I was discharged from the program after four months, and was able to go back to work full-time five months after that. I was told that after five years, I would stay in remission if I stayed on a management plan for life. 

Four years later, I’m feeling pretty confident. Once I make up my mind to do something, I don’t do it half way. I feel great. My cardiologist says my heart is fine. My eyesight is almost completely back to normal, and I’m singing again. As a matter of fact, I am entirely symptom-free. (My friends will tell you that if not being able to shut up is an indicator, my speech center definitely is back to normal.)

There was one little speed bump. As my brain healed, my personality changed significantly. It was disconcerting to not recognize the contents of my brain, to have to get to know myself all over again. It took a couple of years for me to get comfortable with the new me. My kids told me that they liked the new me just fine, the new me was a much nicer person, but that I was a different person than the one they had always known. My husband at the time had a different take on it, but that’s another story for another day.

I’m one of the lucky ones.  I only had to take four months off from work. I managed to find the doctors, nurses, specialists, medication, and support groups I needed, just in time, and I had insurance that paid most of the expenses. Not everyone does. According to some studies, 80% of the folks who have this illness don’t recover. I’m grateful and my kids are grateful.

And that diagnosis? The pathology of the meso-limbic dopamine system? You never heard of it? There is a colloquial term that’s in standard use. You’ll know that one.

I’m an alcoholic.