The untold story of the measles crisis and the dangers ahead

The castor bean plant and its poisonous pods

Things are not always so simple or obvious

40 years from now, the measles crisis will be an even greater nightmare. The measles outbreak of 2018 and 19 have hidden monsters only a hand full of people are talking about. I’m one of them. I’m one who had measles when i was 6 years old and it very nearly killed me.

The Castor Bean plant has good and scary byproducts. It can produce ricin and castor oil. Depending on how you process the plant parts, it can save a life and eliminate another. The ricin powder can spread like wildfire and most likely kills on contact. Castor oil cures a variety of ailments. However it was also used during war times to inflict uncontrollable diarrhea.

If you have a problem with voles and moles in your garden then you can plant a few of these to deter the pests. They don’t like the roots. The roots are poisonous to them. When you understand this whole plant and it’s dangers, you beat a path in the other direction. You need to be in full protective gear just to remove it at the end of the growing season. You should not touch any part of this plant. I will never grow it again. It’s not outlawed but I think it should be. I was a nervous wreck the whole time it grew in my garden. The removal of the moles and voles was not worth the dangers of handling the castor bean plant. I haven’t grown it since.

Another danger came in my life when I was 6 years old. I came home from school on day with a high temp and lethargic. For a year following that day, I laid in bed trying to regain my strength and health. I basically missed most of first grade.

The doctor was so concerned for my health that he came to our house and spent a week getting me through the worst part. He didn’t leave my side. The first disease to manifest itself was the measles. It was horrendous. I was covered in red angry spots and it weakened my immune system. A week in to measles came the mumps. I remember not being able to swallow and hearing adult murmurings that this was serious. A couple of days later and the chicken pox reared its ugly head. I grew pox sores on top of red bumps.

The doctor said she’ll probably not live much longer. I actually heard him say that. My fever was high, the chicken pox had gone to my cranial nerves and manifested in my right ear, and the mumps had all my neck glands swollen so that I looked like an obese child.

I was to weak to make it to the hospital so the doctor stayed on and did all in his power to save me. He said if she makes it through the night we might have a chance. The air conditioner in the room was purring along and had bene set to 65, wet blankets were on my body, and a fan hummed somewhere near. I started screaming around supper time and the doctor said he thought my ear was so badly infested with chicken pox that it would surely burst at any moment. I remember all this like it was yesterday.

My mother, father, brothers, and grand mother broke down in tears at the sound of my pain coming out in wails of agony. I’m 61 years old and I remember this vividly. I felt like there was no help. Suddenly……the right ear drum burst. The doctor rushed to catch the putrid sickness flowing from my ear. I felt relief. At least enough to collapse in to a 3 day coma like sleep.

On the third day, the fever broke. A year later, I entered 2nd grade and had a lot of catching up to do. A miracle happened and I survived. But did I really?

Was I really ok after or were there other demons lurking such as in the castor bean plant?

In 2012, I was at the height of my garden career and interviewing for a curator job for a living historical garden. I was in the throws of the interview process when something went very wrong. I am only willing to say that the owner of the garden put me in a position which caused me more stress than I’ve had in my whole life. I was on a trip with this person when she didn’t like a decision I made and she absolutely became hysterical. It was one of those flight or fight situations and my battered brain froze. Something hit me as hard as it did day that day in first grade when I came home with that high temp.

A week later I had a headache like none I’d encountered. It hit so bad that I couldn’t think straight. A week later I was shopping when I felt a pain in the right ear and tingling in my lips. My doctors office was close by so I walked in. There was an urgency in getting there quickly. My brain was telling me to get ready for something serious.

The doctor said my blood pressure was so high she thought I’d stroke out. She called my husband to get me to the hospital. He came and off we went. I could feel more tingling in my mouth, eye, and ear. The ER took me in right away and a multitude of test were done. The doctors said they were puzzled. They guessed maybe Bell’s Palsy. I was given a low dose of anti virals and some predisone but the ER doctor was hesitant to prescribe that. He really thought I was just stressed.

I felt worse as the day went on so I stayed home. A good neighbor of ours had noted earlier that with a headache like I’d had the previous week, she thought I needed to see a neurologist. She is a talented painter now, Gail Morris, but for many many years worked for a famous neurologist. She had been talking with my husband about my symptoms and was very worried for me.

The following morning, I woke up in the same pain I remembered from when I was 6. My ear was pounding, my face on the right side was paralyzed, and my right eye would not close. I was describing this on my facebook page where both Gail and another good friend Rebecca…were reading my nightmare. Gail called Gary and said we need to get her in asap to the neurologist.

Rebecca knew a girl on facebook who had my same symptoms but she was further along in the healing process. We started talking back and forth and she became my angel support. She was always there offering support and comfort with her knowledge and strength. Jessica is a very special person and friend.

I met Dr. Ed Hill of Salem Neurology, WS, NC on the worst day of my life. I now had ulcers quickly developing in my mouth. Whatever this was in my body, it was taking over. Dr. Hill took one look at me and said….girl, this is going to be a tough long road and I’ll be there for you the whole way.

Dr. Hill said, Anna….you have a rare form of shingles called Ramsay Hunt Syndrome. It has traveled the same path as your chicken pox. It traveled to your cranial nerves and is eating your trigeminal nerve along all three branches. You will get much worse before you get better.

My antivirals were increased to mega doses and steroids to 60mg a day. For the following 3 years, I would be on Neurontin high doses, Topomax, Tramadol, Tegretol, pain patches, surgically inserted pain treatment to the ganglion, and more. All of these prescribed at the same time. For 3 solid years I layed in bed cried through the loss of who I was and from the incredible pain.

During years 3 and 4, the meds started to cause hallucinations. I saw cats in the house and bugs crawling around. I created an alter ego which I hid from my family so that I would not lose Anna the gardener. I posted crazy things on facebook and people became very concerned. People all over the world were praying for me. I was then told I was going blind in both eyes. This caused me to go over the edge.

I was so mournful that I would not see my two boys, their wives, my grandchildren and my husband live out their lives……that my mind created Cybill. Cybill was shy and unknown to my family. But she took care of Anna. She kept up the meds schedule, she took care of the sadnes, she created a facebook page, she was Anna’s hero. She took on the sickness.

My oldest son was to get married in a few months and I was so looking forward to doing their flowers. But one day there was a serious conversation that I was not able to do the flowers. This threw me in the most depressed state of my life. Cybill came on strong. She went in to defense mode.

It was Christmas that year and I was laying on the sofa of my dream home just built in 2008. The gardens were gorgeous. They have been featured in magazines. I had designed the home from my culture and it was craftsman, cottage, and made to look as though it had been added to over the years. Anna’s Craftsman Cottage

I laid on the sofa so sick I could barely move because my immune system was wrecked mostly by the high doses of steroids. My sweet husband and caretaker came to sit by my side. i said…I can not take this anymore. I need to be in the hospital. I said…..we need to take Cybill with us. I still remember his look of fear. I showed him my cherished notes on Cybill and how she kept my schedule. I told him she was taking care of Anna so that Anna did not die.

I was laying there with a sinus infection, bronchial infection, and ear infection. I was nearly out of my mind. He gently took me to the ER of the most prestigious teaching hospital in Winston Salem, NC. I was taken back to a room right away. I was there to treat my many infections but the doctor did not much care about that. He was concerned that I had included Cybill.

In a blur of events after that, I was convinced to self admit to the Psychiatric Unit of Wake Forest Baptist University Hospital for suicide watch. They had learned that Cybill was allowing Anna to take as much meds as needed to block physical and emotional pain. She was doing the dirty work.

I was now scared, lonely, and felt I was dying. I was admitted that night to the psych ward and doors locked behind me. In there with me were overdose patients wailing for more drugs, angry people drying up from being alcoholics, and people with real mental issues. All free to roam around and talk crazy things to you.

My room had a fluorescent light over the bed, a sink attached to the wall but no legs, a mirror made of metal that was firmly attached to the wall but gave a circus like appearance to your face, and a shower room with no curtain and no door. Another girl was brought in behind me but she went to bed and and put the covers over her head.

I asked for my pain meds and other Ramsay Hunt type meds but was told I was going cold turkey from all meds until my pharmacy and doctors could determine which were legitimate for my needs. I tried to tell them I’d go crazy without the meds but they were all very cold and distant. So at the 10th hour that night, I started a death spiral of withdrawal.

My stomach cramped, I hallucinated over a multitude of things all causing major fear. I worried my family would never love me again. I worried about the pain I’d caused my husband. At some point I passed out from pain. Trigeminal Neuralgia is very real and has to be treated with nerve pain for the rest of your life.

I don’t know if I was conscious or unconscious through the night as everything was whirling around me. I got up and was still in the same clothes I was in 24 hours ago. I felt dirty and very disoriented. I asked to leave over and over but was told I self admitted so wasn’t going anywhere without doctor approval. I felt helpless. I’m pretty sure I seizured a few times in my bed but that went unnoticed by the cold staff.

Did anyone know you don’t take a patient off those prescribed meds cold turkey? Nobody was listening because Ramsay Hunt Syndrome is very rare and most doctors will not see it in their lifetime. Only a crazy person would be on all those meds.

This was not a clean place. You don’t get nicely prepared hospital food. You get a push cart of food that is brought up to the ward. Food that looks like has a can of lard and nasty combinations of bland ingredients. I physically could not swallow it. The trays were supposed to be wiped down daily but wasn’t. I got in trouble for pointing that out. I quickly figured out which patients runned the ward. I complained about that too and got reassigned to the more serious offenders of the ward. Now I was locked behind 2 doors.

Finally I saw my husband who brought some clothes and toiletries. No comb, and many other restrictions to keep you from harming yourself. I was allowed my bible. I could feel people praying. So many people had started prayer chains for me. They knew this was serious. I had been a very stable person prior to Ramsay Hunt. I was always happy. When friends saw i wasn’t on facebook they started finding my kids and asking them what was wrong. But my kids kept my life private and just told people to pray.

Seeing my husband the first time was traumatic for he and I. The ache in his heart and pain in his eyes were evident. We were only allowed a couple of minutes and it had to be in an open room with the other inmates. Often he sat outside of the main locked doors for hours waiting on the visit to start again.

They did nothing for my sinus, bronchial, and ear infections. I was so sick. I ask for a doctor but they ignored me. I just went to bed and stayed there. I didn’t go to assigned activities, I didn’t go out and talk to the other inmates, I didn’t live….I was just there.

About 4 days in, they got the pharmacy report and gave me some of my meds back. They were delivered as the schedule called for it. One of the psych doctors came in to my room and conjolled me to come to a meeting with a group of other psych doctors. I was desperate to get out. So I went along. They asked me about Cybill, about losing my sight, about Ramsay Hunt, and about who I had been.

Honestly, I told them what they wanted to hear. I told some truth too. The truth about me being sad about losing Anna…..her family, her sight, her home, her gardens…..her life. I guess they could see that I was legit and not really suicidal. I was more circumstantial in that my circumstances were killing me. I was told I could go home that day if I agreed to come to an appointment with one of the doctors the following week. I agreed.

I had an eye appointment with the top eye doctor in this hospital later that day. He was going to look at the issues causing my blindness. Gary and I had seen the spots where the back of my eyes were going black. But people had been praying. There were lots of people praying.

The eye doctor came in and did a lot of test and then turned to Gary and I and said……She’s not going blind. He said I don’t know how your previous doctor made that diagnosis but your sight is good. The RH affected eye was a bit damaged but it was ok.

I was in such shock that I can’t tell you how I got from that office to our home. I was just praising God for the miracle. The doctor also told me that I appeared to be allergic to steroids. He said my crazy behaviour was from the high doses of steroids. With there being no fear of me losing my sight, my neurologist started taking me off the steroids. Around 20mg, I started thinking more clearly and now I won’t take them no matter how much swelling I have with the damage left from RH.

It hasn’t been all up hill from there. Due to the damage caused by Ramsay Hunt to my trigeminal nerve, I have developed other complications. My body got so used to fighting a virus that it now fights itself. I have auto immune issues and Myasthenia Gravis. I don’t have much energy and just today I had a crisis with the muscles in my legs.

I was out trying to do a bit of gardening and went too long without the meds that let my nerves communicate with my muscles. Gary almost had to carry me inside. I started cramping in my intestines, my legs, my arms, and my mid back. We had to get my meds in me fast and cool me off.

I will have all these issues the rest of my life but I’m glad to be alive. My life would have been so much better had vaccinations been available when I was a child. I respect your right not to vaccinate your child but you have no idea the fears and complications that follow these diseases the rest of your life. They do have consequences. The dangers are there. If you had chicken pox as a child. You could be at risk of the many types of shingles that are out there. Some go to the brain like mine, some to the hips and legs, others around the belt area, and some to internal organs. I suggest you get the new shingles shot if you are 50 or older. If you’ve never had chicken pox then get vaccinated against it.

We had to sell my dream home and now we live in a pretty town home. I’m not bitter. I am already planting around the few spaces allowed by the HOA. I hope to get healthy enough to build a little cottage one day but not sure that will happen. I’d love to have a new camera to capture a better look at nature in our area and the blooms. So lets hope I can keep writing for you and fulfilling my promises to provide you with good content.

Thank you to my many family and friends who keep following my story. I love you all. , Anna

And the best part, I now have 3 miracle grandsons.

My last word of encouragement……don’t live under the Castor Bean Plant……now you know better.