The Journey Begins: Lupus Nephritis and Microangiitis

The Journey Begins: Lupus Nephritis and Microangiitis
I’m on top of the world. Really. Yes, I know my voice is gravely and I’m moving slowly, but I feel like I’m on top of the world.
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I’m on top of the world. Really. Yes, I know my voice is gravely and I’m moving slowly, but I feel like I’m on top of the world. When we, my husband and I, received the news, my stomach clinched into a knot, my hands shook, I felt a little … paralyzed – for about 10 minutes. Dick and I went to the hospital cafeteria to forage since we had 2 hours between appointments. I actually found food there that I could eat. Imagine that, a limited salt-free diet; I still found fresh vegetables and white rolls, crusty white rolls. So I had a few minutes where I had no appetite. And suddenly, all was good. I was hungry. I was alive. There was nothing else to say.

The news that day was not that my kidneys had failed, nor was it that some doctors still hold I have Lupus Nephritis and microscopic angiitis, a rare disease on top of an even rarer disease (does that make me rarified?). The news was that my body had recovered as much kidney functioning as it ever would, and the results were still disastrous. The nephrologist had no hope of my kidneys ever again functioning at an acceptable level. The talk turned to dialysis and transplant.

Four months before this appointment I was totally immersed in building my new print on demand publishing company. I had two wonderful employees and one hateful nemesis to spur me into constant action. At the same time that I started the company in April a relative was on me to get tested for the lupus anti-coagulant marker. She suffered a rare blood clot in the brain, and survived. This walking, talking miracle wanted me to get tested. If I was positive I could take blood thinners to ward off the pending, dooming blot clot. Other relatives joined the clamber as each was tested and came back positive.

I hate going to doctors and I hate blood tests. This was such a hectic time I did not have any energy to spare on being sick. Somehow I carved out the time to see a hematologist and the time to actually get the blood test done. I did my part. I didn’t want to know the results, nor did I pursue the matter any further when the test came back positive.

The headaches started before this doctor-go-round, but I didn’t associate them with anything other than stress and fatigue from starting the new company and fighting a legal battle with Mr. Hateful. The two events were stressful, ergo, headaches. As each week went by after the discovery of the marker I suffered migraines worse than any I had ever had: tunnel vision, throwing up, auras. It was so awful that in the second week of June I found myself stopping by the side of the road four times to lose my stomach over the side rail. Not good. My husband finally persuaded me to see a doctor.

Sunday, mid-June, I dutifully trotted off to my family doctor who diagnosed classic migraines. He got me an appointment to see the neurologist that same afternoon. And as an afterthought he ordered blood tests so I could pursue the anti-coagulant marker. The neurologist ran me through a series of tests and also said, “Classic Migraines”. He gave me medicine and told me what to do when the next one came on.

I went home, too busy to do anything other than work, and promptly put off the blood tests and anything else that had to do with being sick. After all, migraines do not make one a sick person. Wednesday came along, the first time I was free in the morning. It was a good morning to do the blood tests, which I did, and then I went back to work. I sat in front of my computer screen for most of the day wondering why I couldn’t think, why couldn’t I work? I was in la-la land; the day passed without my producing anything. I could barely lift my arms, let alone think.

At six that evening the doctor calls and says, “Get yourself to the urgent care clinic. Your hemoglobin is 6. It should be 12. If it’s still low you’ll have to go to the emergency room.” I’ll spare you the details of urgent care – I did end up in the emergency room to hear the doctor there say, “I can tell you’re anemic just by looking at you. You’re whiter than the wall (which was institutional bright white).” He told me to lie down on the bed and wait for them to come and get me.

“Can’t I sit up at least?” I asked.

“No. I don’t want you to keel over on the floor,” he replied.

Um, I felt fine. Really. I was walking, talking, a little tired, but ok. I just needed to sleep and I’d wake up feeling much better. As the nurses and resident were setting me up in the emergency cubicle with all the crash instruments around, they said, “We’re going to try and keep you alive overnight.”

What? I’m not dying. I’m fine. I’m talking, joking, arranging for certain business to take place without me the next day because I’d probably want to sleep after staying up all night in the hospital emergency room. Neither my husband nor I understood why there was so much concern, nor did we understand even what the problem was. Kidney failure, low hemoglobin, migraine like headaches, all these terms came at us. What we understood from the doctor was that my body was so much in trauma that they couldn’t give me a blood transfusion – it would kill me. And without the blood I would die. Catch 22.

Over the next two days I had a kidney biopsy and received two diagnoses. The doctors did not know for sure if I had Lupus, after all, I had none of the classic signs of Lupus. They did know that I had an acute, aggressive collapse of my kidneys. They knew this because of the blood tests I had done in April. In one month I went from fully functioning kidneys to nothing. I was having headaches and purging through all openings because I was being poisoned by my own blood. And I had no hemoglobin because the hormone the kidneys produce to stimulate blood growth was not being produced.

From mid-June through to that October day in the doctor’s office I went through six rounds of chemotherapy, ate only a special kidney diet, took lots and lots of prednisone, heart medication, diuretics, and lots of vitamin and mineral supplements. But it wasn’t enough. The doctor said, “Transplant.”

After the initial shock wore off I realized that I was very calm, very content. I felt like nothing could hurt me anymore. There was nothing so important as to distract from my peace of mind. All the stuff going on, whether it was dealing with insurance or the pharmacy for my drugs (since medication comes under our socialized system, the pharmacy is a first level check for drug coverage. Since I don’t have cancer it is difficult for them to understand why I need the anti-nausea medicine given to chemo patients. That took a while to straighten out), whether it was the physical task of walking up and down stairs in our building or trying to walk down the street to the insurance office, it just didn’t affect me anymore. I waited for this feeling to dissipate, vanish, blow away like so much smoke. Every day I awakened to a new world. I finally realized, after all these years, nothing HAS to hurt me. I can choose to live on the positive side or I can choose to exist in the negative.

What does it mean to live in the positive? Each moment that I exist I can choose to see that moment as an accomplishment. 100% success. I made it through the moment. And if I’m truly in this moment, this moment, this moment, I choose to live that moment as a Good moment. There is no such thing as one bad moment. Each moment stands independent of the next and the previous. It’s only by stringing them together that I can see this moment GOOD, this moment GOOD, this moment GOOD, one after the other.

It’s difficult to explain how free I feel, how little I take anything personally. Same problems are still around, but my attitude has shifted dramatically. All is good. Every piece of news is good. Every treatment suggested is good. Every new limitation is good. Even my enemies are good (try to figure that one out!). Everything is good because everything is a gift to get me where I want to end up.

I always said, dreamed, that I did not want to be a bitter old woman. You know the kind; they have no good words to say about anyone. Everything that can go wrong does go wrong. Every favor is not enough. I didn’t want to be that person. G-d has given me many opportunities to face situations where I had every right to be bitter. Choosing, at each step on the path to not be bitter, has brought me to this point. And now I can see there is nothing to be bitter about. What freedom!

As my spiritual teacher says, ‘This is the work.” This is what we have to always do – choose to see that all is good.

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