Hello

 

Carma at home

My mother-in-law suggested I write about my health journey, so here goes. 

Today's post will be a simple introduction to establish context. Later posts will dive deeper into each topic (diagnoses, treatments, research I did, what I found helpful along the way, etc.)  

I was always naturally hardy, until I wasn't. That change started in April 2014, a week after my 58th birthday. So for nearly six decades, I had no concerns about my physical health. Mental health is another story and I'll talk more about PTSD, depression and anxiety later. For the most part, this blog will focus on physical well being. 

I saw a doctor only a few times during my entire childhood. Generally it was for minor injuries caused by adventurous activities. A wrist fracture. A few stitches on my hand. A ruptured eardrum from flying off my bicycle and landing on my head. The spins from that were worse than six shots of tequila!

My whole family was hardy. I never gave it any thought until my health declined. The first time I saw anyone get a flu, I was sixteen and living in a commune of Jesus People (search Wikipedia for Shiloh Youth Revival Centers if you are curious about that). It sticks as a memory because I was the only one who did not get sick, while about twenty young and generally healthy people around me were miserable in bed for a week and I was the caregiver. 

So there I was, frolicking through life with my super immune system protecting me and oh was I so proud of it! I had no food sensitivities, no allergies of any kind -- except to penicillin. We found out that my immune system was offended by penicillin when I was thirteen and had a cough, and my mother had it worse and had gone to a doctor and he prescribed a pill form of penicillin for her. So she figured I was getting the same thing and she gave me one of her pills. It caused a severe rash to break out on my hands and feet - top and bottom. Man, was that itchy! The doc told her I was allergic, don't give me any more of that. I haven't had penicillin since 1972. 

As for antibiotic prescriptions, I have rarely needed them. Once for a urinary tract infection. 

Headaches were rare. Before 2014, the only time I vomited was from drinking too much. 

During my adult life, I generally took a multivitamin+minerals tablet, but not always. That was the extent of my concern or interest in proper nutrition. 

As for exercise, I hated it and the one time I joined a gym, like many Americans, I went so rarely it wasn't worth the cost to keep the membership. I would say that I preferred to just live an active life. I really hated aerobics and jogging and had no interest in doing a jazzercise or yoga class. It was all too much fuss as far as I was concerned. 

I was so "whatever". I felt sympathy for people who got sick all the time -- at the office, many had frequent colds and flus, and they were not faking it to stay home -- they were coming to work sick! That's terrible, because it spreads the virus to other workers who have little ones at home and others who are more vulnerable. But I didn't get sick. People all around me would get sick and I wouldn't. Sometimes they wondered about me. And having a name like Carma contributed to the mystery. 

In April 2014 I was doing a lot of yard work. I had bought a home in 2012 that had lots of fruit trees -- apricots, peaches, pears, lemons, limes, oranges, tangelos, guava, pomegranates and figs -- and I had planted a raised bed vegetable garden and giant sunflowers and wildflowers. Gardening, landscaping and DIY home improvement projects were my favorite way to get exercise. 

At that time in the Los Angeles area, it was already very hot. I was sweating a lot. I was not drinking enough water. I was eating a lot of salty things and taking high doses of calcium because, you know, women over 50, gotta take calcium! 

I want to also state for the record that I was using chemicals in my yard, pesticides, herbicides and fungicides, and fertilizers. And I was not as careful as I should have been. I have no doubt that I was exposed to toxins that absorbed through my skin and that I breathed some in. I should have always put on gloves and a mask. I didn't. And I know lots of people are like that. We ignore warnings on labels. 

The symptoms started in early April. A slight headache. I took acetaminophen and it didn't go away, so I switched to ibuprofen, then tried Advil. That was weird. A headache. And it wouldn't go away. But it wasn't really bad. Easy to ignore.

Frequent muscle spasms started happening, mainly in my toes or calves. Muscle weakness became suddenly more noticeable -- I could not open anything, whereas a month ago I could. I felt suddenly old, but that's all I attributed these little annoyances to -- aging. 

Then loss of balance. One day I tipped over while squatting over a flower bed. Bizarre. 

These little signs of "aging" continued and it was very annoying, but I wasn't concerned until this very strange sensation occurred in my thigh-hip connection. It felt as though my legs were not connected. Something felt off, weird, detached, yet I was still able to move my legs. I started to worry that maybe I had a neuromuscular disease. But I didn't want to go to a doctor just yet. I was sure it was nothing. Just aging. And I continued working in the yard. I drank more Gatorade, figuring my electrolytes were probably out of balance. 

Then the nausea started and wouldn't go away. I really hate nausea. Vomiting is the worst! And one morning, feeling all out of sorts, I drank some Gatorade and instead of that helping to get my body in balance, it made me sick and I threw up. That was when I went to see a doctor. I called first thing when they opened and they told me to come in. 

They took vitals, listened to my complaints, took urine and blood samples and sent me home. Around 5 p.m. the doctor himself called me and this is what he said: "You need to go to the emergency room immediately. Your kidneys are on the verge of shutting down."

"What happens when your kidneys shut down?" I asked, genuinely curious and totally ignorant of how my body did all the amazing things it did. 

"Your heart stops." 

"Oh! I'll go right away."

He offered to call an ambulance for me, that's how urgent it was. I told him my husband was home and would drive me immediately, and we left within five minutes. 

I checked into the hospital on April 23rd and they kept me for four days. Kidney eGFR 8. That means my kidney function was down to about 8%. Creatinine 5.70. That's a waste product that stays in the blood when kidneys fail. It's supposed to be around 1.1 for me. Calcium 15.4. That's way too high. 

They did a CT scan and told me there were "lots of little white balls" all over my abdomen. They sent an oncologist in to see me, thinking it was lymphoma. They decided to biopsy a swollen lymph node they found in my left armpit and based on that they diagnosed me with something I had never heard of. Sarcoidosis. 

At the time it was on a "mysterious, rare disorders" list. Meaning they did not have a whole lot of data about it. It was hard to find a specialist who knew much about it because so few people had been diagnosed with it, and so little research had been done as of 2014, that doctors were pretty much in the dark about it. All we knew is that it was an autoimmune disorder that deposits a very specific type of granuloma here, there, anywhere. They thought it primarily affected the lungs, but in my case, it was in the lymph system. They didn't see anything in my lungs. 

As for the kidney failure, they started me on IVs immediately. The doc had called ahead to the ER and they were expecting me. The IVs were enough to flush my system. I did not need dialysis or a blood transfusion. After four days of IVs, my eGFR was 12 (my kidney function was improving). Creatinine down to 3.89. Calcium back in the normal range at 10.6. 

They referred me to a registered dietitian who explained that I would have to be on a very strict kidney-friendly diet until my kidneys healed. 

What happened to my kidneys? 

The nephrologists did not know, could not definitely answer that. One of them said, "We're swimming in chemicals," and he just shook his head. It was anybody's guess. 

"Did sarcoidosis cause my kidneys to fail?" 

"Maybe. We don't know enough about it."

For the next eight years, my life was like riding a roller coaster in the dark. Cycles of blood tests and specialists. Rheumatologist, because they know more about inflammatory diseases and autoimmune disorders tend to fall in that field. Nephrologist, because they know kidneys and I would need to be extremely respectful and caring of my kidneys if I wanted them to continue to heal.

"Will my kidneys ever be normal again?"

"It's possible. I had a patient who was on dialysis for years and he got off dialysis -- kidneys are amazingly resilient." 

One thing I knew for sure: Dialysis is not a lifestyle I wanted. I was a hard no on dialysis. I would rather die than spend my life going to a clinic every week for dialysis. No thank you! 

I was faithful to that kidney-friendly diet for ten years! More about that in a future post, when I dive deeper into what that means and how it worked out. 

I'll wrap this up for today, as it's Thanksgiving week and I have food preparations to do! 

Subscribe to get notified when there is a new post. I promise, you won't get spammed by me and it's easy to unsubscribe whenever you want. If you have any trouble at all as a follower of this blog, please tell me. Blogger is a Google app. I care about privacy and I hate ads, so I don't monetize my blogs. I don't need your money or your sympathy. I'm fine. This blog is meant to help others find their way to better health. So I will close with this: 

1) Don't take your hardiness for granted. 

2) Exercise and drink plenty of water. 

3) Care about the quality of food you eat and learn something every day about your body's needs. 

4) Take better care of your body. You will never regret that. 

❤