My Healthcare Journey – shoutforjoy.us

30 years have passed and so little has changed.

Today (October 3, 2023) marks the 30th anniversary of my mom, BJ’s, passing. From August on of 1993 comprised a season from hell for us. I will try to get the dates right. It may require a re-edit once I call April, or Bethann gets home from work. On August 4, two days after April’s 17th birthday, she broke her leg with a spiral fracture, when she stumbled on the top landing of the attic steps from her bedroom. She started her senior year in high school in a wheelchair with a cast from her ankle to her hip. We had to borrow our friend Nancy‘s hospital bed, and place it in the living room, since April obviously could not handle steps. Since Nancy no longer needed a hospital bed, she used April’s flat bed.

On September 4, Nancy was found dead in that bed of an apparent heart attack. She was 50 years old. Her family asked me to handle her funeral and the burial of her ashes, etc. I took a several days off of the job I had just started with an auto parts company in Macungie to do this. I had just returned to work. It was a bright, warm day, the 13th or 14th of September. I was riding my Honda Helix scooter down the main drag of Macungie. A car ran a red light to my left and made a left turn into the left turn lane, next to me. I started honking, because I did not have room to move right and I did not know what this driver intended. At the next intersection, while I was honking and flashing my headlamp, a landscape truck ran the stoplight to my left. I hit his front, right fender and went airborne! I flipped three times at different angles to the earth. I rolled off the hood of the truck on the way down. My bike was still running. The anti-freeze was flowing toward me. I started to scream. I did not know what was broken, but did not want the radiator fluid to get into my wounds, so wanted someone to move me quickly.

Thankfully, a member of the volunteer ambulance crew worked at the bank across the street and had witnessed the whole thing. He was already on his way out the door before I hit the ground. I shattered my right ilium and fractured my pelvis, and got some cuts on my left arm and hand. I think that was September 10. The ambulance took me to Lehigh Valley Hospital. This was back when they just had a rotation of doctors with various specialties on rotation in charge of the ER. On my day, it was a hand specialist. He kept hovering over the scratches on my hands. They got stitched up beautifully! I kept on telling him that they were not the problem. My hip was the problem. They took an x-ray of my hips. They gave me crutches and told me to walk out of there. I screamed like bloody hell! They gave me another Percocet and told me to “buck up.”

I don’t know where or if I slept that night. The hospital ER called me the next morning and asked me if my hip hurt. I said, “No shit, Sherlock! I was only screaming as I left last night.” They asked me to come back to the ER. I said, “Why don’t I just schedule a CAT scan?” They assured me they weren’t going to make me wait around all day, but get me right in, since their gurneys are uncomfortable, and I had to get a ride with a neighbor who had a Lincoln Continental, since there was no way I could fold myself into our Subaru Justy. We were there for over eight hours! I determined there and then to avoid Lehigh Valley Hospital if at all possible!

At this point I needed a hospital bed and April could graduate to her flat bed, albeit, still in the living room. Nancy didn’t need her bed anymore, so someone retrieved April’s bed from her apartment. I used the hospital bed in the dining area and April used her bed in the living room. Bethann answered the phone, “psych ward” if she was upstairs and “orthopedics” if she was on the main floor. My doctor, Priscilla Benner, loaned me her cordless phone, so I could keep it at my bed, so we didn’t have any more injuries from trips and falls. The mailman delivered our mail directly to my bed. I was supposed to be horizontal for three weeks.

My mom died on Oct 3rd. So, it was a day or two over three weeks and Bethann and I were flying to Phoenix for BJ’s funeral. The airline seated me exactly opposite to the way I requested, so that my right leg was cramped behind the bulkhead. We had an extra hour delay on the runway. They offered a complementary beverage as an apology. I chose an O’Douls. What a mistake! I ended up puking out the door of Joan Bucher’s van when Les pulled over on the way home from the airport. That was my last O’Doul’s.

I have had six strokes, many (~50) TIAs, a brain bleed, and a couple of seizures. I have gone for several years without a neurologist. I thought I found a decent one. Then I read her notes on our visit. She had not listened AT ALL. She got things exactly opposite of what I had said. She ordered unnecessary tests, because she had not listened to my recounting of my history, nor had she read my chart. So the things she got right, she treated as if they were amazing new discoveries that she had made, instead of what we had found out at HUP in August of 2011.

I am allergic to 13 different medications, and have at least two auto-immune disorders. I cannot afford to have doctors who are sloppy and careless.

Now, directly to the headline. When I was nine or ten and sick with something, my mom made an appointment with our usual family doctors. The practice had grown to include five physicians. We went there in time for our appointment. We waited for over an hour. My mom was livid. She went to the desk and let them know what the problem was, and that it was unacceptable to have a sick child sitting in their waiting room for that length of time and unacceptable for Dr. Towne to treat us this way. We were leaving. We would no longer ever see Dr. Towne; would advise Dr. Linke to let him go, and will return when someone is ready to see her son or would go directly to the pharmacy. These are her son’s symptoms. We left.

Yesterday, I had an appointment with another neurologist. He rescheduled three times to better fit his schedule. I was instructed to show up 15 minutes early. This irritates me! Doctors routinely do this. Why don’t they just set the appointment time as 15 minutes earlier? It’s a power play. On two accounts: 1) It’s disorienting. You now have two times in your head to remember. 2) It establishes the idea that you are arriving earlier and are waiting for him or her, establishing the fact that he or she is more important than you are.

Tony and I were ushered into the exam room at the quarter of time, went through the preliminaries, BP, chart corrections, etc., then waited until more than 45 minutes after the scheduled start time of the appointment. In other words, we were there over an hour. I had had it. The memory of my Dr. Towne non-visit had returned to me and I left in a not very graceful fashion.

It was not until after I had gotten home and realized the date that the full impact of perhaps why the Dr. Towne and Mom incident had seemed so immediate at the neurologist’s office. And I said some things at the neurologist’s office that my mom did not feel comfortable saying publicly as a woman in the 1960s would have, but I am pretty sure she said to them later, privately. She and my dad met in law school. She worked as a legal secretary at various times. Lawyers have to keep schedules, as well. There are ways to keep schedules and handle multiple important issues and people. Good legal secretaries know this. Good doctors know this. Skilled surgeons, who have to show up on time, know this. Not everything that needs to be said needs to be said by you, or needs to be said now. I believe sloppy schedules are largely the result of arrogance.

Afterword:

Today, (10/7/2023) I received an email from the neurologist, from a donotreply account, that said that I had missed my appointment. I emailed them pointing out that I was not the one who missed the appointment, rather it was the doctor who had. Furthermore, he had made my point regarding rudeness and arrogance by sending an email from a donotreply account, as there was no way to have a true two way, equal conversation using that.

I never really liked wingtips anyway.

I was born with defects in my ankles, knees and hips. As an infant, until I was three, I had to wear braces between my legs when I slept. I still was horribly pigeon toed. The only kind of shoes I was allowed to wear until I was a teenager were wingtips. The only choice I had when shopping for shoes was black or brown. Then I had to wait until they put the special heels on them. For all the good they did! I still had bloody ankles and would trip regularly, going up stairs. I hated those wingtips. My nickname was Pidge. I had a note that said I was not allowed to wear tennis shoes (that’s what we called sneakers back then in Minnesota) at any time. I had to go barefoot for gym class. I played football (not very well) barefoot. Soon enough, you’ll see how this fits in with my initial hospital stay for my infection.

A friend from church stopped by on Sunday afternoon, interrupting my mysterious telethon, with a most thoughtful gift: a small stereo radio/ CD player, and the loan of a few CDs. Bethann brought me some more of my favorites: Sufjian Stevens, Raul Malo, etc. I listened to these through the night. At one point, I asked the nurse for some water. After what I thought was 30 minutes, I got out of bed and went into the hallway looking for my nurse and the cup of water. A nurse and an aide came toward me and asked what I wanted. I told them I had asked Linda for water half an hour ago and never got it. I’m thirsty. The nurse said Linda’s shift ended seven hours ago. The aide was scampering to get a chair and placed it behind be just as I fell down onto it. They helped me back to my bed and got me some water. You remembered the part about how I was on morphine, Fentanyl, and Percocet at this time. So I passed out for a couple more hours.

After I was served what they called breakfast, the hospitalist doctor visited me. He sat down in an office style armchair. He told me, “Cranford, I’m afraid you are high.” I leaned over and puked on his shiny, brown wingtips. I said to him, “Well, it’s your fault!”

During the course of my stays he and I became good friends.

The beginning of troubles

Fred Benjamin leading the tour of his encampnent where he lived for 22 years.

It is cliché, yet apt in this case, to say hindsight is 20/20. My long ordeal of kidney failure, migraines, strokes, TIAs, aortic valve replacement, etc., all began with a scratch on the back of my neck in September of 2009.

Our dear friend, Michael Yezdimir, was dying in Abington Hospital. I felt terribly tired, but not particularly sick, when I went to visit him. I had a little scratch on the back of my neck, probably from a flying wood chip, either from icon production in my business or from working on renovating our barn to house the business. Michael passed away a few days later.

I first met Michael several years earlier. He had arranged to meet me where I was working as office manager at Diseroad, Wolff, Kelly, Clough & Bucher Architects in Hatfield, PA, for us to go out to lunch together. My pastor, Fr. Boniface Black, had referred us to each other. Mike had been raised in the Serbian Orthodox Church. All of the services were in Serbian, so he could not understand anything that was going on. He left the church. Later, he had joined an evangelical church and married and raised a family. He and his wife, Sharon, had three daughters. Mike was feeling drawn back to the Orthodox Church. He and I were the same age. I had made my journey into the Orthodox Church starting in 1997 and being chrismated in the Spring of 1999. Mike confided in me that he had hepatitis C and hemophilia. He also knew that his family would be quite resistant to Orthodoxy with all of its icons and incense. I’m sure this is why Fr. Boniface had referred him to me. Bethann had had a hard time accepting my conversion to Orthodoxy. We had waited for her to come around. That’s why I was not received until 1999, so we could be received together. Due to Michael’s health, Fr. B. did not wait so long to receive Michael back into the church. Sharon struggled for a couple of years, but eventually embraced it fully.

The scratch on the back of my neck became inflamed and terribly infected, probably from some of the people on the street giving me thank you hugs for the meals we served in the park. I am allergic to most antibiotics, so it got worse and eventually I had to see a surgeon to have it cut out. He pronounced me healed when he took the stitches out. I told him, “If I’m healed, why is there still pain and the feeling of heat there.” He said, “The incision is closed. My work is done. You are healed.”

The infection was not gone. A year later, October 2010, Fred Benjamin and I were leading a group on a tour of Center City Philadelphia from a homeless person’s perspective. My back hurt so badly I needed help getting up and down steps or over low walls in the encampments. I called my doctor. She ordered X-rays, a CAT scan, and blood work. She prescribed Fentanyl patches and Percocet for the pain. On Wednesday, I got a call from the hospital telling me that they read the images and they suspected bone cancer in my spine. I was to discontinue the Fentanyl and only take Percocet. We had to wait a week to test for cancer, and the Fentanyl had to be out of my system. Nothing definitive showed up in the blood work. The Percocet did nothing for the exquisite pain. I told Dr. Jerry Burke about this report. Now, Jerry is not my doctor. He is a very good friend who has saved my life three or four times. He saw patients at Grand View Hospital at that time and we went to the same church. The head of the radiology department, Dr. Joe Kyriakos, also went to our church. In fact, we were both in choir. Jerry called Joe and told him to look at the imaging again. He told him that no way did I have bone cancer. Bone cancer is almost always a secondary cancer. I had no history of cancer, but I did have a history of infection. Both Jerry and Joe volunteered from time to time with me to serve the homeless in Phila. with The King’s Jubilee.

I was in so much pain that Bethann did not trust to leave me home alone when she had to go to work on Saturday morning. She arranged for Serge Kaminski to stay with me. Even with two Percocets, I would scream in pain when standing up or walking.It was not pleasant for Serge. About 11am, Grand View Radiology called me, They said they looked at the images again and concluded it was not cancer and to please come to the Emergency Room to be admitted to the hospital. They were so sorry for the mistake. Bethann came home and took me to Grand View. To their credit, the head administrator of the hospital called me twice to apologize for their error.

In the hospital, they put me on a morphine drip, Fentanyl patches and Percocets, to manage the pain. They gave me MRIs from my brain to my tail bone, with and without contrast. I was in that machine for over an hour. I enjoyed the beat. I dreamed of a rock ballet to go with it. (That had nothing to do with the drugs.)

I had my cellphone with me. This was a mistake. On Sunday, while high on Fentanyl, morphine, and Percocet, I called everyone in my contacts list. I have no recollection of what I said to them. All I know is that they won’t tell me, and that several of them have refused to take any more calls from me, ever.

My Home Apothecary

Friday, I spent most of the day making capsules at our kitchen table. I have two capsule machines: size 0 [~500mg] and size 00 [~600mg]. With either of these I can make 24 capsules at a time. It is a slow process, but not difficult. It has allowed us to reduce our use of pharmaceuticals and improve our health dramatically. Back in September 2013, I reported about talking to my doctors about ginger and turmeric. I make those capsules. Since I make them, I can add some black pepper into the turmeric capsules, which is an added bonus, not yet available off the rack at drug stores. Turmeric is much better activated when combined with black pepper. This way, I don’t have to remember to add black pepper to every meal when I am taking turmeric.

I have managed to stay off Lipitor due to turmeric. With the turmeric and ginger, I have not had to have a Synvisc or cortisone injection in either of my knees for three years now. They were at the point of talking about replacement. They seldom bother me anymore. The site where the infection had eaten into my spine is totally clean and restored, as if nothing had happened there, according to the last MRI. This is what powerful, natural anti-inflammatories can do for you.

I also made 600mg cinnamon capsules and 500mg green tea capsules, Friday. These serve similar purposes. They both help regulate / reduce blood sugar and are powerful antioxidants to prevent cancer and other degenerative diseases. These take some careful choosing and preparation, however.

There are basically two kinds of cinnamon. The most commonly available is Cassia Cinnamon. It is produced mainly in China, Vietnam and elsewhere in Asia. The Chinese bark is darker brown. It does not curl up tightly in the drying process, and, most of the time, isn’t smooth. It takes some effort to break up the pieces. It is what is sold for baking spice as it is much less expensive than Ceylon Cinnamon, also known as “True” Cinnamon. Cassia Cinnamon has a sharper or hotter flavor than Ceylon Cinnamon. That may taste great on your rice or snickerdoodles, but it is not what we want. You don’t want to ingest large quantities of Cassia Cinnamon, because it contains large amounts of coumarin which can damage the liver.

The bark of Ceylon Cinnamon comes tightly rolled and smooth, with an orangey color. It has a relatively sweet flavor. It was originally produced in Ceylon, modern Sri Lanka. Now it is also produced in Mexico and India, as well. It is more favored in South American cuisine than Cassia Cinnamon. It has more health benefits than the Cassia, without the coumarin danger. Another word about cinnamon; if you have Type AB blood, you are most likely allergic to it. Cinnamon has many health benefits. I t is an antioxidant. It lowers so-called bad cholesterol and reduces the uptake of glucose in the blood when ingested 1/2 hour before meals by those with Type 2 Diabetes, among other things.

One would think it would be a simple matter of going to a food store and buying a box or tin of loose, green tea. Read the fine print! On my last trip to Assi Market, it took me over 20 minutes in the tea aisle before I found a box of simple green tea, nothing added, vacuum packed. It was from China by way of an Irish importer! Green tea has a range of benefits. It lowers cholesterol and blood pressure. It can lower blood sugar and improve the metabolism to digest and burn fat. This is especially important for those on a low carb diet. There is evidence that it is good for the brain to prevent Alzheimer’s disease. It can help prevent stroke and congestive heart failure. No wonder there are so many Chinese!

From time to time, I also make coriander, to help the kidneys; and garlic, to fight a cold or infection. I’m allergic to at least six classes of antibiotics, so I have to do my own homework and do my best to stay healthy. Using herbs and minerals, I have managed to avoid knee surgery, and those expensive injections for years, and reduce the number of prescription medications I regularly use from six to two, while improving my cholesterol, and more importantly, my inflammatory numbers. I now have put my Type 2 Diabetes into remission using nutrition. When they discharged me from the hospital in 2011, I had diabetes from the kidney failure and steroids they had put me on to fight the Stevens Johnsons Syndrome. So I think the time and effort are worth it.

I have set up two men my age down on the street with capsule making machines. One went to a walk-in clinic with bad arthritis in his knees. He was handed a prescription for a medication that would cost almost $400/month. He came to me. He said, “What are these people thinking? I am coming to a free, walk-in, clinic. How do they suppose I am going to afford this much for their drugs?” He paid me $15 for a capsule machine and a starter supply of ginger and turmeric from our good, bulk supplier in Amish country. This set up cost The King’s Jubilee about $30. He wanted to pay. I gave him a low ball number. He will stick to it and do it, if it cost him something. Although, he is a serious person. I started supplying another man, who used to be homeless, who then volunteered with us, with ginger and turmeric and green tea capsules. This started after he disappeared for a couple of weeks. He reappeared and told me the reason for his absence was he ate a chocolate bar and it put him in the hospital. I got tired of making his capsules, so I gave him a machine and bulk spices. The next week he said, “That’s really hard work! You must really love me!” His daughter was able to stop her insulin after she started faithfully using the green tea and turmeric. He passed on the love!

My 46th TIA, in other words, Friday

It was a Friday, February 15, 2019, I was just feeling a little off. I started to paint a portrait. I couldn’t get done with it fast enough. I did not have the patience for it. I felt fidgety and unfocused. I applied the first coat of two colors, then put my brush away. When I walked down the hall to the front of the house, all of a sudden my right side went limp and I fell against the wall. I leaned against the wall and continued to my chair. I decided to try to sort out the problem I was having getting my glucose test strips from the pharmacy. Medicare has instituted new rules aimed at limiting test strip use, because, you know, so many people are addicted to pricking their fingers. The local CVS had received my prescription on Tuesday. The doctor’s office had not written it in a way that complied with Medicare’s requirements. They did not bother to inform me or my doctor of this. I filled a drug prescription on Wednesday and asked about the strips. They told me to tell my doctor to reduce the number of test strips to 300, since 400 was more than three months’ supply. I test four times per day. I did so. I used my last test strip Thursday morning. I called CVS. I got put on hold for several minutes. I called back. Anna finally answered after a long hold. She wouldn’t let me speak to explain my conversation with my doctor’s office. She said, “It wouldn’t work. I’ll try it again.” Then she immediately put me on hold again. After a couple of minutes, she got back on the line and said, “We’re really slammed. It didn’t work.” Then she hung up as I was trying to ask: What didn’t work? I was exhausted enough by the ignorance for one day, so I didn’t call back again until Friday. On Friday, I got the real reason Medicare wouldn’t fill the prescription, even though it was now written properly. On my last prescription for test strips the doctor’s office had mistakenly directed me to test twice a day. I had mentioned that I test 4 times to the pharmacist and to my doctor. No one seemed to think this was a problem at the time. It turns out Medicare won’t refill the prescription until I exhaust the supply at 2 uses per day. CVS told me to call Medicare to get an exemption. I called Medicare, who informed me that they didn’t routinely give exemptions. I told them, up to now they had covered my strips for four times per day. They told me Congress changed it. (After all, we need to save a few dollars on test strips so we have more money for trillion dollar bombers that barely fly.) I called my doctor’s office again to have them write the presciption for what I could get. I called CVS again. I explained to Mary what I had one. She made disparaging remarks about Medicare. I told her that Medicare remained the most efficient healthcare delivery system in the country, with the highest customer satisfaction rating of any insurance company.. She made an absurd statement with no basis in reality: “Well, the last thing you want is government in charge of healthcare!”

That put me right over the edge. I mean, who is to be in charge, if not government? Who is to enforce malpractice law? How could there be malpractice law without government? Who would enforce insurance contracts, drug safety and quality of care? My mind was reeling! My body was already in an active stroke state when I called. I responded with a word I had never uttered aloud before. I said, “You must be an ignorant Trumpite!”

I regretted saying it as soon as I heard it. It was true, but it would do no good. She apparently hung up before I finished the sentence. I waited a couple of minutes, then I called back. Eleanor, the manager answered. She told me that I was not to do business with them anymore after I used that word. I said, “Excuse me. She was the one who brought politics into the discussion. Wait a minute. What word?” Eleanor said, “You called her a c_nt.”

I told her that I most certainly did not. I have never used that word in my life. Eleanor claimed that another employee heard me say it as well. I asked how that could be, since only Mary and I were on the phone. I told her what transpired, but that did not matter. None of Anna’s or Mary’s mistreatment of me or their nonsense or discourtesy made any difference. At CVS, the customer is now always wrong.

An hour or two later, Frank, my visiting nurse, came to check on me. He ended up calling the ambulance and I was back to Grand View’s ER with stroke symptoms and extremely high blood pressure. They went over me and determined that I had another TIA. The doctor asked me if I thought that staying at the hospital would provide any benefit. I told him no. I thought it was a bad idea to come in the first place. He released me.

A month later I went into CVS to pick up a prescription for my wife after her surgery. The hospital had mistakenly sent it there instead of to the Giant Pharmacy next door. The pharmacist on duty had no problem giving it to me. Anna, a pharmacy clerk, started to go into a fit about how Eleanor told me I was not to be in the store; something Eleanor never told me. Anna proceeded to call the police, while the pharmacist hastily finished filling the order and ringing me out.

Bethann and I switched all of our prescriptions to mail order or to the Giant. Yet we still get texts from CVS for refill reminders. When I called them to tell them to stop that, they told me that came from corporate and they had no control. Yet, they originated from doing business with the local store. I told them they could figure it out. It was their problem. I did not want them bugging me. they harassed me, inconvenienced me, falsely accused me, called the cops on me, banned me from their store. they could figure out how to stop the texts, then they could go to hell.

Years ago, when I had an occasion to contact CVS “customer service” about a matter, I learned of their corporate policy of psychological warfare against customers. The phone tree on their published “Customer Service” line has no options to get to customer service. I even tried hitting 00 repeatedly to no avail. Finally, I screamed into the phone. That got me through to a bedraggled customer service agent. I told her what I had to do to get through to her. She said, “I know.”

I said, “You mean to tell me, that is the only way anyone can get through to you?”

She said, “Yes.”

I said, “You have a shit job.”

She said, “I know.”

April 2016

In the end of March into April of 2016, I had stroke-like symptoms for about a week. I was miserable. I kept on thinking it was just another complex migraine. I couldn’t sleep. I was hyper-alert at times. One side of my body was weak and didn’t work properly. I finally drove to Grand View Hospital’s ER on Monday, April 4. They took my vitals, extracted some blood, scolded me for driving myself to the ER, and for waiting through a week of stroke-like symptoms. They examined me and determined that it did appear that I was having a stroke. Then they proceeded to ignore me for five hours: no food, no water, no vitals, no meds, no monitor. They told me I was going to be admitted. I finally caught an orderly who found a couple of sandwiches and some water for me. The kitchen was already closed. I ate the meat and cheese out of the sandwiches and threw away the bread. Part of migraine prevention is a low carb diet. All of my strokes and multiple TIAs (transient ischemic attacks or “mini-strokes”) have been caused by migraines.

I took my own drugs and supplements with the water. Finally, I got up to leave. I said in a loud voice that I would be more comfortable at home and they could call me when they were ready to admit me. A nurse immediately told me they were ready and scrambled to find a wheelchair and took me up to the telemetry unit on second floor. They kept me for five days and did every kind of heart test I have ever heard of, along with a CT scan and MRI of my brain with and without contrast. Of course, I was on a monitor the whole time. The brain scans showed no evidence of new stroke damage, so it was determined that it was another TIA, my 42nd. Even though all of my strokes and TIAs have been migrainous, they did one last heart test, an echo-cardiogram. It revealed that my aortic valve was in bad shape. They found that it had been damaged by the infection that had attached to my spine in 2010. My cardiologist, who was doing the test, asked me why I didn’t know about this before. I said, “I’m not the one doing or reading the tests! How am I supposed to know anything?” He told me I would need to have it replaced. He didn’t think it was that urgent. He recommended I go to Lehigh Valley Hospital Center.

There are two reasons I would not go to Lehigh Valley. In 1993, when a truck hit me when I was on my Honda Helix, the ambulance took me to their ER. The doctor in charge that day happened to be a hand specialist. He kept looking at my hands to see what he could fix there. There were only minor scratches there. It was my hip that was shattered! They X-rayed my right hip, then had me stand up on it. I screamed in pain. They gave me crutches and another Percocet and told me to “buck up”. I hobbled out of the ER to ride home in excruciating pain in our compact car. I stayed on the couch that night. The next day, Lehigh Valley ER called me and asked me if I had pain in my hip. I said, “No shit, Sherlock!” They told me they had looked at the X-rays again and it looked fractured. They asked me to come back to the ER to get a scan. I asked why should I come back there and would I be seen immediately. They said they would take care of me and I would not have to wait. I arranged for a neighbor who had an old Lincoln to drive me up there, because I couldn’t bear folding myself into our Justy again. They made me wait all day long, lying on a gurney, in pain, in the ER, before they finally got around to me. Then they had the nerve to send a bill with a second ER charge! The other driver’s insurance was paying all of my expenses, but I would not sign off on that second ER charge! Lehigh Valley kept trying to bill for it. They finally called me and said, “What do you care? The other guy’s insurance is paying it.”

I replied, “Now, you really have me angry! You made a mistake, sent me home on a shattered hip socket on crutches. Told me to ‘Buck up’ ignoring my exquisite pain, and you want to get paid a bonus?! When my car mechanic screws up, and forgets to do something or damages something, he eats it. You don’t get to just get paid more for making a mistake! Do you want me to hire a lawyer and see where this goes, or do you want to just forget the second ER charge?” They removed the charge.

The second reason I didn’t want to go to Lehigh Valley was that I wanted to go to HUP, because my stroke specialist and neurologist were connected there. There is public transportation to Philadelphia. I have a lot of friends in Phila., and they have a long, national reputation for excellence in heart surgery.

When I was discharged from Grand View on April 8, as the nurse’s aide was helping me out the front door and into our car, my left side was numb and unresponsive. She was alarmed and questioned whether I should be leaving. She was concerned that I may be having a stroke. I assured her that they had done every possible test for that. I had been experiencing symptoms like this for about ten days. It is just an atypical migraine and they’re kicking me out.

I did not waste any time making an appointment at HUP.

What doctors don’t tell you

I first noticed odd shaped patches of skin on my feet and ankles that were totally white or pink, lacking pigment, when I was 12 (1967), at the pool. Some of the patches had spots of dark, tanned spots in the middle of them. I had no idea what this was. Someone told me it was from consuming too much vitamin C. Around puberty, I noticed the patches had appeared in my groin. By the time I was in college, there were small spots on my hands, which have grown larger and spread up the under sides of my arms. The patches have spread on my legs, as well, nearly totally covering my knees. By high school I had a name for this condition. It is vitiligo. Hardly anyone had heard of it, back then, except those who had it, at least among Caucasians. Whites can hide it more easily, especially those with pale complexion. There are also better make-up choices, for those who are sensitive or embarrassed. People can be cruel. I am fortunate. Mine has not shown up on my face, yet.

The disorder was cast into the spotlight when Michael Jackson took the extreme measure of bleaching his skin to ‘hide’ his vitiligo. The disorder is incurable. There are some treatments that claim to breakdown the barriers in the skin to allow the pigment to reenter the pale areas. These have sometimes painful side effects and risks. Plus, none of them prevent new areas of pigment loss from appearing. When my vitiligo started, not much was known about it. More has been learned over the decades, yet no doctor thought to tell me what caused or aggravated it or the nature of the disorder.

It was not until after I had nearly died from an allergic reaction to Vancomycin, the eighth drug I became allergic to, I broke out in hives for no apparent reason (Winter 2011). I finally visited an allergist in Philadelphia per Dr. Jonathan Cohen’s recommendation. She looked at me. She read my medical history. She said , “We could spend a pile of money testing for almost everything under the sun and still not find what you reacted to. You are allergic to all these antibiotics. It’s probably an autoimmune disorder. After all you have vitiligo.”

I said, “Back up. Back up. Back up. What do you mean I have vitiligo? What has that got to do with it?”

She said, “Well that is autoimmune. If you have one autoimmune disorder, the likelihood is you will have another.”

Me: “Since when have we known vitiligo is autoimmune?”

Dr.: “About 30 years or so.”

Me: “Why did no doctor tell me this?”

Dr.: Shrugs shoulders. Sends bill.

Since then I have learned that there are a whole host of diseases and disorders that are classed as autoimmune. There is some research that is even indicating that some percentage of Type 2 Diabetes is autoimmune. Most autoimmune diseases are predominantly hereditary, and, like the allergist said, if you have one, you are likely to have two. Yippee skippy! Things start to make sense. My mom had pernicious anemia which is autoimmune. My brother has ulcerative colitis, autoimmune. Several of our children and grandchildren have a variety of minor and major autoimmune disorders.

Demonic Attack?

As I sit in our living room waiting for the sunrise, with the right side of my neck covered in steri-strips over just under my partially shorn beard, the still painful reminder of last week’s right carotid endarterectomy, my mind goes not to the ER visit that led to this particular knife fight, but to my first ever trip to an Emergency Room. I was four years old. I was playing in the sandbox, next to the garage, behind our little Dutch colonial on Shoreline Drive in Robbinsdale, Minnesota. My sister, Sue Ann, was swinging on the swing set, which our neighbor, “Grandpa” Olson had made for us. I ran right under the swing and the exposed end of a bolt on the bottom sliced my scalp, right in the middle of the top of my head. I stumbled, then got up, screaming, and ran, bleeding profusely, to our backdoor.

Grandma Ingham was visiting. She grabbed the beautiful afghan she had knit for us, wrapped me in it and scooped me up. I asked her why the afghan. She said it was to protect me against shock. I didn’t understand. It was the middle of summer. Why would I possibly need an afghan? I couldn’t believe she used this and risked it getting all bloody. At the same time, I felt honored and comforted: honored, that she was willing to spend something so precious, that represented so many hours of work, on me; comforted, because it was softer and less itchy than any of our blankets. My mom grabbed her keys, and sent Sue Ann, Alison and Tic over to the Ericsons. I rode in my Grandma’s arms to North Memorial Hospital’s emergency room in our brand new 1959 Pontiac station wagon. The doctor handed me a spool of black suture thread to play with, to distract me, while he stitched up my scalp. He must have used a bit of a local anesthetic, because I remember it just sort of tickled a little while he was working up there. Then we went home.

Thankfully, my blood washed out of that beautiful afghan.

Now, why does my mind go to this when I started out thinking about Sunday’s visiting nurse asking me, “Have you ever considered you may be under demonic attack?” while I was opening the three window shades on the southeast front of the house in the dark? I’m just three months shy of 64 and I can recall those scenes from 60 years ago as if they happened earlier today. Part of me is still that spastic, precocious four year old. And, the nurse asked that irrelevant question after I had already told her I was an atheist. I also explained that when I believed in God, I didn’t fear demons. “The only power they had were lies.” Twisted people were another matter. I didn’t fear them enough to modify my actions, but I received my share of threats. A Mennonite pastor threatened to kill me. The Fruit of Islam leader at Graterford Prison put out a hit on me at one point. A gang of street punks threatened me. A high ex-offender took me from my day job at gunpoint to drive him to a rehab. Bishops, priests and pastors of every stripe slandered me, lied to me, and bullied me. Police under four different mayors of Philadelphia harassed and threatened me. This was just part of my job of serving the poor.

Of course, she was talking about my health history: the mysterious infection on my spine, the vancomycin causing kidney failure, then Stevens-Johnsons Syndrome, the six strokes, the atypical migraines, the 47 TIAs, the damaged aortic valve, the allergy to 12 meds, etc. I don’t think it was demons. I think it was more likely that my shell was softened when I was a young eagle by the spraying of DDT over our house and yard to kill the mosquitoes in the swamp at the end of our backyard. Every day is Earth Day. See what I did there. That was a Rachel Carson reference. Does your brain work that way, or is it just me?

The sunrise was beautiful!

Medicare Is Not Socialism!

I am sick of these stupid memes that show trucks plowing snow with some text about socialist snowplows. This plays into the far right agenda to remove all government programs designed to help society as a whole. There is nothing socialist about the snowplows. The drivers don’t own them. In most cases they aren’t even unionized. They are keeping roads open so all of the workers can still get to work to make money for their corporate overlords.

Yesterday, I was attacked on Facebook, on a post about my 46th TIA (mini-stroke) by my cousin Sally’s husband, a self-identified “capitalist pig”. He asked if I was concerned about who was paying for my ER visit, since I have Medicare. He sells insurance. He told me that he was challenging my “ridiculous socialism”. At first I responded with, “I paid plenty, with Medicare payroll taxes my entire working life and with a monthly premium out of my disability now, plus the deductibles and copays, prick!” I mean, I just came home from the ER recovering from my 46th TIA, my third in the last three weeks, and he decides to “friend” me to take stupid potshots?! I then blocked him and deleted his comments. I don’t need the stupidity, the judgment or the drama right now. He called his wife, his children and his grandchildren “capitalist pigs”, as well. I don’t think it was very kind of him to call my cousin Sally a pig.

Medicare is not socialism. Some Republicans tried to brand it as such when it was being proposed, just as they did Social Security before that. Neither program involves workers seizing the means of production, so, by definition, they are not socialism. This is just old-fashioned, McCarthyist red-baiting. The GOP also lies about the insolvency of the misnamed Social Security Trust Fund. If GOP presidents had not stolen trillions of dollars from it for useless wars over oil, it would be solvent for decades to come. If the Social Security tax were not regressive and Social Security itself acted like a true insurance, as in, it was means tested, it would be solvent indefinitely. Both programs were created by capitalists.

How does this benefit capitalism? Teddy Roosevelt was the first president to advocate for universal health coverage from a position that no country can have a strong economy with a sick workforce. Eisenhower, another GOP president, certainly not a socialist, advocated for universal, free healthcare for children. He was hoping that the universal free distribution of the polio vaccine would serve as a pilot for such an initiative. His reasoning was manifold. Children cannot choose whether they are born into a family that can afford healthcare or one that can’t. He felt that it is undemocratic and a denial of the American credo of “all men being created equal” to not at least provide healthcare to all children, if not all people, who need it. Also, providing healthcare to all people helps save money and reduce pain and sickness for all by limiting contagion and preventing diseases and injuries from creating worse problems long term. It also saves a ton of money by eliminating the billing and collections process and all those bonuses to insurance executives for denying care, not to mention all those wasted advertising dollars. This has been the experience of all of the civilized countries, which have universal healthcare. (Most of these are social democracies, as opposed to the US which is an anti-social oligarchy, listing toward fascism.) These conditions produce a more productive workforce. This is a capitalist value.

Social Security was introduced in the midst of two world wars. Traditionally, children take care of their parents as they age and can no longer care for themselves. Wars are a capitalist venture. Weaponry and war is the US #1 export and budget expense. The world wars, followed quickly by the Korean War and the Vietnam War, etc., left a lot of parents without children to support them. So Social Security is a program to share that burden somewhat among the whole nation. The truth of the matter is that money does not keep. Money is just a means of exchanging labor. Another GOP president, Abraham Lincoln, said it, “Labor creates all wealth.” It is said that money is denatured manhood and denatured womanhood. Social Security creates the illusion that one lives on one’s own resources in retirement. No one does. Everyone who no longer works lives off of the labor of others. Social Security and Medicare and various private insurances are social contracts that try to preserve the illusion of self-sufficiency which is an essential myth necessary to prop up capitalism.

Next time someone tries to tell you the fire company or highways are socialist, remember Ben Franklin established the first free public library and organized the first fire companies, and helped lay out the grid pattern of roads for the westward expansion of the US. He also was a strong believer in capital exploiting labor to generate wealth, as in The Franklin Fund, etc. Also, when Brian Brady tries to sell you insurance, don’t buy it. He will try to make you feel guilty if you ever dare to use it.

My 44th and 45th TIAs

On Tuesday, January 29, 2019, I woke up with my right hand numb and part of the right side of my face numb. I have had six strokes starting in June 2011 through October 2012. They were determined to be migrainous strokes as they started with my atypical migraines and I was found to have a very unusual configuration of small arteries, along with some missing ones that normally would supply the right side of my brain. All of the strokes and most of the TIAs occurred in my right parietal and temporal lobes. The doctors at Hospital of the University of Pennsylvania (HUP) concluded this was due to the tiny arteries that fed these lobes, without any cross artery to the left side, would catch tiny clots that were thrown loose by the disturbance of the migraine. Prior to 2019, I had experienced 43 Transient Ischemic Attacks (TIAs or “mini-strokes”). This is my count. The MRIs don’t show individual TIAs well, but they do show damage done by multiple TIAs in the same spot or spots. I have atypical migraines. This means that many times they present with unusual aura and symptoms. Typical aura for migraine is partial loss of vision, or visual disturbance, on one side for about a half hour followed by intense pain on the opposite side of the head. These can be accompanied by hyper-sensitivity to light or sound, nausea and mood changes often including a desire to be alone.

Many migraineurs also notice a prodrome, which can last for as long as 48 hours before the aura presents. This is that uneasiness that something is not right like a premonition of something bad about to happen. Some do not notice their own prodrome, but their friends and relations notice it about them. They behave differently; more subdued or more irritable or more agitated than usual. Once the headache (which can last for as little as a half hour to several days) passes, it is usually followed by the postdrome or “migraine hangover“. Like the nickname implies, it can include fatigue, uneasy stomach, feeling totally washed out. It can last for a couple of days.

What makes a migraine atypical is everything from a variety of very strange aura to additional debilitating symptoms during the headache itself, including impaired vision, vomiting, diarrhrea, sinus pressure, body pain, balance issues and eye or tooth pain. I have had migraines that lasted for up to two weeks at a time. I follow an intense protocol to prevent migraines, since mine cause strokes and TIAs. Many migraineurs are triggered by specific things. A lot of people have the mistaken idea that some of these triggers are universal to all migraineurs. For example, sulfites in red wine is a fairly common trigger, but not everyone is affected by them. Also, a person’s triggers can change several times throughout their life. People can have migraines during various times in their lives, with long migraine free periods between. A possible ray of sunshine is that those who experience classic migraine live longer on average than those who don’t. Of course, it may be like the runner’s dilemma. A study showed that the average added life expectancy for a runner is roughly equal to the cumulative hours in their life they spent running. The lesson there is: don’t run unless you enjoy it.

Now back to my story. I have had “Gumby vision” and “Picasso vision” as aura to horrific migraines. The summer of 2011 I had only eight days without debilitating migraines. I had three hospital stays and one ambulance transfer to Philadelphia (HUP). Some of the migraines lasted almost two weeks. It was during this time I had my first several TIAs. They were recognizable to me and my family as they caused temporary deficits that outlasted the pain, that were the same as if I had had an ischemic stroke: weakness on one side of my body, word salad, uneven smile, etc. Dr. Scott Kasner, one of the top stroke specialists on the east coast, prescribed the Jefferson University Hospital Headache Center’s regime to help prevent migraines. It is a combination of herbal supplements and drugs. We have tweaked it a number of times to individualize it for my peculiar drug allergies and tolerances. It has given me many migraine free weeks and even months. Even so, I have experienced a total of 45 TIAs and three more small strokes, for a total of six.

I woke up with the 44th TIA occurring on January 29, as I stated above. I sat this one out at home. It took two days for the symptoms to pass. I figured we know what is causing them. They don’t leave any permanent damage; I can handle this. This turns out to be only partly true. A TIA can leave permanent damage. It can also turn into a full blown stroke if not treated correctly.

On Sunday, February 3, 2019, I woke up before 6 A.M. with the same symptoms. This time they were more intense. Then I took my blood sugar before breakfast. It was 515! I don’t recall ever having a reading that high before. I waited for Bethann to leave for church, then I called my good friend, Mike Visser, to take me to the ER. I feared that the numbness was due to diabetic neuropathy. This time, they got me right into the ER, took several tubes of blood, installed an IV line, just in case, took me for a CT scan of my brain and moved me up to a private room on the telemetry floor within an hour. I had to stay almost completely horizontal for the first 24 hours. This is to help heal the brain. The idea is that it is easier for the heart to pump more oxygenated blood to the brain if it doesn’t have to overcome an extra vertical foot or so.

Grand View kept me for three days. We were busy. They took an echo of my carotids. They took another CT with and without contrast of my neck. They took an MRI of my brain. Finally, on Tuesday morning, Dr. Olivero and his team performed an angiogram to look at the blood vessels in my lungs, my neck and parts of my brain. They found my right carotid is 80 to 90 percent blocked. Surgery has been scheduled for March 6. What is interesting about this is that this condition is not related to the TIAs I experienced. The blockage is on the opposite side from where these TIAs occurred. This means this was a serendipitous discovery, much like the last time I went to the hospital for stroke type symptoms and they discovered that my aortic valve had been damaged by the infection on my spine from two and a half years prior. It is also significant that they occurred on the opposite hemisphere of my brain from the overwhelming majority of my prior TIAs and all of my strokes.

Six or eight doctors visited me during those three days. Every one except one used the word “interesting” to describe my case, when they were talking to me. I told Dr. Hurlbut, one of three neurologists I saw, that that is one word that patients do not want to hear from their doctors. I would just like to be normal for once. He sympathized, then assured me I was anything but normal.