health care – Page 2 – shoutforjoy.us

My Wonderful Weeds!

I was released from the hospital late Thursday night, after six days to treat an infection in the suture line in my chest a month after open heart surgery. I got home close to midnight because we had to wait for the delivery of the wound vac, which the nurse then had to attach to my chest.

Friday morning, I finally was able to walk in our little yard. I have not been able to weed or do any yard work this year. The crownvetch and the Queen Ann’s Lace are everywhere run amok. Yet I planted so many daylilies and native flowers over the years that they are holding their own pretty well! The Sears Tower bloomed for the first time! Gorgeous! It is so stately right next to the huge, gangly Purple Suspenders. The Coneflowers and the Buttonwood Bush are putting on quite a show out front, next to the hyssop and liatris and brown-eyed Susans.

The tulip poplar sapling that was poisoned by something, survived and has put out new leaves. The Florida Tetrapetal St. John’s Wort has surprised us once again. It never comes up where I scatter its seeds, but we always manage to have some in our yard. (The birds have been kind.) We just had one blooming in front of the house. While I was in the hospital a couple popped up in our Monarch Garden in front of the back shed and one is peeking up through the ‘weeds’ on the wildflower hill on the other corner of the backyard.

FL tetrapetal St. John's Wort is pale yellow, upper middle — FL tetrapetal St. John’s Wort is pale yellow, upper middle

There are little surprises on the wildflower hill: tiny false sunflowers, nearly hidden daylilies, native beebalm, a tiny holly bush. The rabbits scurrying through. It has an untamed beauty. I even appreciated the invasive, Queen Ann’s Lace as it just floated above. I wept as I beheld my wonderful, wonderful weeds!

Stoplight daylily at the end of the driveway

Reset

On June 8, I had open heart surgery to replace my aortic valve, which had been damaged by an infection. It all happened quite suddenly. We only discovered the damage on April 4, when I had what we thought was a stroke. It turned out to be a severe TIA. It was serendipitous in that it triggered a battery of tests that uncovered the weakness in my heart. It needed fixing quickly. The doctors at Penn expedited my case. I had my heart catheterization on May 9 to make sure I didn’t need any bypasses or stents.

At 6am on June 8, Bethann & I went to the Hospital at U. Penn. and checked me in to pre-op. Later that day, I was so happy to wake up alive! Bethann told me that my first words were: “Where is my keyboard? I want my keyboard.” I wanted to write. Once I got my keyboard, I couldn’t focus to write anyway. I haven’t been able to focus to write or to paint since the surgery. My days have been full of visiting nurse visits, doctor visits, walks, naps. I have researched subjects to paint. I did one sketch that was less than satisfactory. I finally decided to start over where I started in April; with a self-portrait. That is why I call this painting “Reset”. I’m using it to reset my creativity to get back on track writing, painting, editing, etc.

This painting is based on a photo I took using my Mac just before my surgery. My granddaughter Isabella saw my hair blowing around in my face when we were riding in the back of their car. She said I looked like a rock star with my hair in my eyes. I had already started painting this when she said this, but had not painted the face yet. In the photograph, the computer screen is reflected in my sunglasses. I decided to paint a door opening into a light filled room, instead.

Pops

I never learned Pops’ name. Everyone just called him Pops. He was happier than any man had a right to be who was living homeless in the parks or under the bridges. I wondered if he was simple minded, truly spiritually disciplined, or was just born happy. Scientists tell us that people’s happiness centers in their brains develop differently in the womb. At any rate, he took the lessons his mama taught him seriously! If he couldn’t say something nice, he wouldn’t say anything at all. He wasn’t homeless for being lazy. He was always busy. He had a big shopping cart. He used it to collect recyclables to turn in for cash.

He would go around to the renovation and demolition sites and ask for any of the metal they would part with. Many times the union men would have him go in and do some of the particularly dirty work, up in the vents, etc., in exchange for the metal and all the wire. They usually didn’t get much, if anything for the wire, unless it was stripped. Pops would recycle all the aluminum, steel, copper and tin. He would keep the wire. He also snagged cords from the blinds on these jobs. Pops would then painstakingly strip the used copper electrical wire. He would then wind it into crosses. He used the salvaged cord from the blinds to tie necklaces for them. He always wore one and had several more on his person. He was in the habit of giving these cross necklaces away. He would say, “Just trust Jesus” or “Jesus loves you” and offer you a cross. If you told him he had already given him one, no matter, please accept another.

Over the years, Pops offered me four crosses. I passed three of them onto others. Pops eventually did succumb to the dementia that comes with Alzheimer’s. He spent his last year or so living on the street in a large crate with a loving community of four other men living in adjacent shipping crates under a parking ramp bridge. These men looked after him with sensitivity and love rarely seen in nursing homes with all the amenities. They knew just how to deal with him when he was present and when he ‘went off’. It was tragic, yet also beautiful, to witness. Pops was reaping loving care in the roughest of circumstances from the most unlikely caregivers after sowing a lifetime of simple love and cheer.

I have to say, though, to witness this in the USA in 2002, and to have no way to intervene to get him to a properly heated space with proper treatment, because we as a people lack the compassion to muster the political will to provide universal, easy to access healthcare as a basic human right, was heartbreaking.

When I was chrismated in 1999 in the Orthodox Church, my godfather, Alex Smerkanich, gave me a very nice, shiny, real gold cross, on a gold chain. I lost it, one dark winter night, while serving the homeless at 18th and Vine. So I had Pops cross blessed on the holy table at St. Philip’s and I started wearing that instead; in memory of Pops and for all my homeless brothers and sisters. When I started to tear out the wiring to rewire our house, I saved the old wire. I strip it and I make crosses like Pops did and give them away, for people to remember Pops and his simplicity; to remember all my homeless brothers and sisters; to work to end homelessness; to work for universal healthcare. It’s pro-life!

I painted Pops from memory. I made him younger than I ever saw him to reflect his childlike faith and unsinkable optimism. Yet I included his white hair and long white beard to reflect what a gift of wisdom this was. I made a small cross out of salvaged doorbell wire and fastened it to the canvas on the necklace.

Playing in the Intersection

This post is cross-filed in three categories, because my painting has now crossed the line. Perhaps I should say, I am not coloring inside the lines? It has gone beyond a matter of the technical, “If You Can Read, You Can Cook …” concept, yet encompasses that. My primary care physician has now prescribed my painting as art therapy as part of my heart healing and stroke prevention plan, so it is part of “My Healthcare Journey”. Most importantly to me, and why any of this is happening is that my subjects fall into the third category: “Other People’s Children”.

“Other People’s Children” is a totally different approach to pro-life. It looks at adults whom the world has thrown away and sees the absolute beauty and value the world missed. The term “pro-life” has been hijacked by the anti-abortion mob, who are anything but. I celebrate my friends, true loved ones, whom the so-called “pro-life” crowd cast aside as ‘takers’ because of their disabilities, gender, color or economic standing. I am painting their portraits to go along with their stories. Some are from my weak memory. I have very few photos.

I tried to capture the essence of Rosalie, a woman I met in the Women’s Detention Facility in 1985. We became lifelong friends. She was irrepressible. She attached herself to me immediately. We were both about 30, just a month apart in age, worlds apart in backgrounds. She died of leukemia on the street in 2008, when we were about 53. This is just a poor cartoon representing her. It really looks nothing like her aside from the freckles, frizzy red hair and big smile, but does capture some of the emotional impact of her coming toward me for the first time in the House of Corrections.

I miss her.

The next portrait is of Alex Bejleri or “Alex the Albanian”, my dear friend. We have known him since I started to serve on the street in 1988. We helped him learn English so he could get his citizenship. He walked over 5 miles in the snow to visit me in the hospital when I was ill. He calls me when I can’t make it to the street. He no longer needs our service, but he loves my soup. He prays for me and for my family daily. He still believes what they told him on Radio Free Europe, even though he has spent most of the last 28 years in Philadelphia, living on the street. I guess, if you go to jail for something, then escape, give up your homeland, your family ties, move half a world away; it’s hard to come to terms with the reality that it was based on an illusion. You see. He was a ‘political prisoner’ in Albania for listening to American propaganda radio broadcasts. I had to find him a shortwave radio so he could try to tune them in here. I kept trying to explain that America lied to him and they were not allowed to do that here. It was too much for him. Of course, now, they have changed the law. The CIA is now allowed to lie to us “legally” by broadcasting propaganda within the US. I guess Alex should try firing up the shortwave again.

My life is so much richer for knowing him.

These are just two of the hundreds of ‘throwaway’ people whom I have known throughout my life and grown to appreciate, enjoy, and sometimes love. These are the people whom the cold-hearted, falsely self-labeled ‘pro-life’ Speaker of the House Paul Ryan and his ilk call “takers”. If one doesn’t like people, all kinds of people, one isn’t pro-life. People are not interchangeable widgets. Each one of us is a unique, living, breathing, unrepeatable expression of the love, exuberance, joy and persistence of life! Each one of us longs to be and ought to be respected and celebrated. I am attempting, with these feeble cartoons and little articles to do that for some of my lovely brothers and sisters whom most of society would rather not see.

The doctor prescribed it, because she took my blood pressure after I told her about these paintings and it was 20 points lower than before. This is good for my heart. I hope they are good for yours, too.

Let me take you down ’cause I’m going to

I went for my intake interview at a different psychiatrist and psychotherapist office on Thursday. It ruined me for the rest of the day and Friday. We’ll see how today goes. The last time I had such an interview was two years ago. That morning I was feeling pretty good and I just didn’t want to ruin it, so I didn’t get into everything. The interviewer was in a hurry and didn’t probe either. As a result, my diagnosis wasn’t correct. She diagnosed me with severe depressive disorder but missed the CPTSD. This time, I determined to be completely open, no matter what it did to my day, and my interviewer was in no hurry and really probed. It got me thinking about all those I have lost to suicide and murder, and the times my life has been threatened and all the bullying I have endured; the friends I have lost. I will attempt to go through the list.

My best friend and playmate when I was three to five died in a plane crash in Peru on Christmas Eve, during my junior year in high school. My best friend in 5th and 6th grade committed suicide in 8th grade. My best friend in 8th grade committed suicide in 10th grade. My best friend in 9th through 12th grade, who was also my sister committed suicide when I was 47. Of the 100 kids in my elementary school 6th grade class, 4 were dead by suicide by Christmas of our 2nd year in college. One beautiful friend had murdered his sister and parents in the bargain. Another two were dead of fast acting cancers. By the time I was 30, 15 in my class were dead of suicide or overdose, and several more friends from junior and senior high school and from my sister’s class.

Then she asked if I ever had suicidal thoughts or thought about committing suicide myself. I know it’s a form question, but I had to laugh at it. Are you kidding me? With this background and having been held at gunpoint by a high ex-con, and threatened to be killed by a Mennonite pastor, and experiencing the probable murder committed by a bishop of his wife, the multiple attacks, slanders, jealousies from clergy because I was serving the poor; the attacks from the press, police, mayors, with more lies and slanders because I was serving the poor, being terrorized by a conman because we refused to be conned. Experienced 6 strokes and 40 TIAs from migraines after allergic reaction to antibiotic for infection I picked up on the street gave me kidney failure.

YES! I think about suicide. YES! I have suicidal thoughts. Do I have a plan? No. I have been hurt so many times by so many who have committed suicide, I do not plan to do it. Although I do not blame any who have done it. I understand and empathize fully. Each night when I go to sleep, I would not be disappointed if I did not wake up. Most mornings lately, I am disappointed that I did.

She asked me what my goals for therapy were. This was hard. It has been so long since I felt anything close to normal, I had a really hard time coming up with any. I think I told her, “I would like to not cry all of the time. I would like not to sleep so much.” She said to make them reasonable, attainable goals. I paused and said, “I would like for people not to be afraid of me.”

She then asked me a question that no one in my life has ever asked me. She said, “Were you always slow at school?” We had already gone over my educational level, which is confusing. I crammed three years of college into two, went to two graduate schools without a bachelor’s, and dropped out of both of them without receiving a master’s. I taught a master’s program, however, and received an honorary doctorate. I have been ordained four times in five denominations (none of which I asked for, one I wasn’t present at). Most people assume I have a master’s. Many assume I have a doctorate. I guess my demeanor, with my slow speech, and my occasional stall while trying to find the right word due to the stroke damage, and my brokenness due to PTSD made me appear to be mentally challenged.

I laughed at the thought. Maybe I have finally gained the tools I sought in ninth grade when I found that all my knowledge and fast thinking were so useless, because I could not use them to help tutor the kid that was in the detention area with me for not getting his algebra homework, while I was there for outsmarting my enriched English teacher.

Educating Doctors

Yesterday I saw my neurologist and my primary care doctor. I see the neurologist for my migraines. My migraines cause strokes, so it is imperative that we do all we can do to prevent them or to stop them if they start. I am not one to just blindly follow doctors’ orders. My dad was a medical malpractice defense attorney. I was raised to take responsibility for my own health. My dad would regularly lecture us on how it was the medical profession’s fault that they were getting sued so badly, because they had been so arrogant for so long. They expected you to take their orders and prescriptions without question, as if they were gods. The problem was that created an expectation of infallibility. So honest mistakes and judgment calls now became malpractice with astronomical, punitive damages. That was the 1960s.

Needless to say, through the years my approach has raised the hackles on a few doctors. I simply explain to them my background and ask them if they would rather I trust them totally and implicitly, and if anything goes wrong, I will sue their pants off; or we can work as partners and friends. Yesterday demonstrated that I have stumbled upon some pretty amazing doctors. Of course, they have demonstrated this to me before this by their expertise and care. But yesterday they let me teach them.

At 11:30, I had my appointment with Dr. Cindy Wang, my neurologist. She is a delightful Chinese woman with a great sense of humor and a keen scientific mind. Computers frustrate her, though. (Of course, we all have days like that. I digress.) We had to cut back on the Verapamil, because I had started to react to it with hives. I had been up to 360mg morning and evening. I had tapered myself back to 90mg morning and evening. That took care of the hives, but the migraines came back. So we had increased the Topamax to 150mg morning and evening and inched the Verapamil back up to 180mg morning and evening with no ill effects. I still was having migraines more frequently than when on the higher dose of Verapamil. I wrote this just to give you some background.

We started the appointment with Cindy asking me how things are going. I told her that I had learned about ginger and had added it to my treatment routine and that it had helped tremendously. I told her about the studies that had been done that had shown that it was as effective as Imitrex for stopping migraines and was not contraindicated in people who had had strokes, like Imitrex is. It is also effective at preventing migraines. One of the studies was from the NIH. It is a very useful anti-inflammatory. She asked me how I took it. I told her I took two 650mg capsules per day as prevention and two at the onset of a migraine instead of the Ketoralac. She asked me if that worked. I said I was having far fewer migraines and when I did they were much milder. Rarely did I have to resort to Percocet or Ketoralac to stop a migraine anymore. She said, “You don’t just eat the ginger root? That capsule is not as natural.” She told me I should cut it up and put it in hot water with some brown sugar like they did for her when she was a girl, when she had a cold. It’s very good for colds. I told her that I really didn’t need the sugar and I do use fresh ginger, as well, in my cooking, but it’s not very convenient, as a twice daily thing. When I have a migraine starting I need to get it quickly; no time for all that prep work. She made a face and said it really tasted bad anyway, and grinned.

Then I told her that since we reduced the Verapamil, I hadn’t needed to get more Synvisc shots in my knees; that, perhaps, it was causing more inflammation for longer than we were realizing, and aggravating my arthritis. I said the ginger should help with that. I told her that I had also started turmeric, which is an even more powerful anti-inflammatory. she was not at all familiar with turmeric. It is related to ginger. It is another root spice. It gives mustard its yellow color and it is a main ingredient in most curries. Since I had already brought up my knees, I told Dr. Wang (rhymes with bong) about how I had started to take turmeric to ease the pain and inflammation in my spine. I also informed her of the study that had been done that showed that just 150mg of turmeric per day was more effective than 20mg of atorvastatin, Lipitor, in reducing bad cholesterol. She took notes and she thanked me. We moved on to the squeeze the fingers and tickle my feet part of the interview. We made sure my ‘script’s were all up to date. Then it was, “See you in four months.”

At 2:30pm, I saw Dr. Niccole Oswald, my primary care physician, concerning the excruciating, constant pain in my back that I have been experiencing since June. I told her about the ginger and the studies. She was very pleased to hear about that. She said she had a patient with heart disease that could not take Imitrex, so she did not have an effective way to treat her migraines. We discussed how to treat my back pain. The infection from October 2010 had eaten into my spine and damaged my vertebrae from T5 to T12. We don’t dare use steroid injections, since that could compromise my immune system and I am allergic to six classes of antibiotics. The choices were either a topical anesthetic cream or a topical patch. I then mentioned that I had been using turmeric to help manage the pain, since it is a good anti-inflammatory. I had started taking two 600mg capsules daily. She asked if it really helped. I told her that it took the edge off, but I was still hurting plenty. Then I broached the subject of stopping Lipitor. Atorvastatin has been known to increase the risk of type 2 diabetes (especially in women). A couple of its common side effects are headache and back pain. So it seems like it would be a good thing to eliminate this drug from my system. She was very agreeable to that and seemed to understand the science behind it. She said it takes four weeks for Lipitor to get out of your system. So she ordered blood tests for Oct. 22 to see how we are doing. I guess it is “trust but verify.” She also told me that turmeric is especially useful for treating arthritic psoriasis. We decided on the adhesive anesthetic patches. CVS just got them in this evening, so I will start using one tomorrow. Maybe I will be in less pain and less grumpy.

It was so refreshing to have doctors not only open to the idea of alternatives to pharmaceuticals, but pleased at the possibility and willing and happy to share it with others. I think maybe I should send them a bill for the seminar, though.

An MRI for My Birthday

Each birthday marks the passing of another year into the tomb of time. It means I am another year closer to my death and during the year I have passed through the anniversary of that death. I don’t mean to be morbid. It’s just a realistic view of the brevity and frailty of this life. I turned 56 yesterday. That’s only 14 more Christmases until I’m 70, a man’s allotted time on earth. Any way you calculate it, the road ahead is a whole lot shorter than the road already traveled.

It’s a frightening prospect when one is confronted with one’s own mortality. It forces one to take stock and, hopefully, prepare in such a way that one’s death is a smooth and joyful passing. But this is not just about me. I have too many unfinished projects. There are the unfilled icon orders. There is my messy, indecipherable office. There is the unfinished barn, the unpainted windows, the gas boiler that arrived yesterday, the electrical wiring that needs sorting out, the grandchildren that need guidance and love, the rain garden that needs to be completed, the homeless people who need to be fed and clothed. Then there are all the people; my wife and family and others whom I love and who love me. There are countless reasons to not embrace my mortality. Yet it stares back at me from the mirror and I am keenly aware I am on the waning not the waxing side of life.

So, for my 56th birthday, I got an MRI of my brain. I had experienced several severe, lengthy migraines with strange aura and stroke-like symptoms. As I was waiting to hear the results of my MRI, I sat on the front step of our house on Front St. in Souderton. It was a beautiful, clear day. The spring flowers were giving way to the summer flowers. I saw a man walking on the sidewalk on the far side of Chestnut St. downhill from us. His image vanished for about three feet, then reappeared, continuing to walk. The scenery suffered no interruption. It was much like a continuity flaw in stop motion animation. So I called this aura “Gumby vision”. Soon after this, my phone rang. It was the radiologist from Grand View Hospital. He told me that the MRI indicated that I had had three little strokes on the right side of my brain. I should arrange for someone to bring me to the hospital to be admitted for further study.

My Recent and Current Illness

Several people have told me I should write about my recent illness with the twists and turns it has taken. I will try not to make it read like one of those old folks talking endlessly about their sciatica or irregularity. It will not be written in chronological order, but memories and vignettes will be posted as if they were written on the day they happened. When I am done it will be able to be read in sequence from October 3 to the present and beyond, God willing.

The story has many angels and a few demons. There are many blessings and a few lessons to be learned along the way. A central character in the story is Grand View Hospital, Sellersville, PA; a place I found to be staffed with people of integrity, compassion and skill. A good friend asked me on Sunday, during coffee hour, “Did it do you any good?” I answered him that I was doing a good bit better to be out of the hospital. He said, “No. Are you better? It would be a shame to go through hell and back and not to have anything to show for it; to not be improved by it.” I began to weep and said, “Yes. There were many blessings.”

You may choose to keep checking back to see what new articles I have written or wait a few weeks and read them at once, in order. Feedback, comments and questions are always welcome. Thank you.

Death in the Mirror

After four or five days in ICU, I finally looked in a mirror and saw death staring back at me. My face was all dry and wrinkled as if I had aged by 15 years in one week. It was startling to see. I examined the shape of my creases and noted that they weren’t smile wrinkles, but showed more worry and sadness. They reminded me of my depressed, alcoholic Grandma Ingham. I tried to scrub and scrub to get all the dead flakes of skin off, hoping that would allow my skin to smooth again. I was hoping that I would still have a shot at smile wrinkles, those magnificent, friendly crow’s feet; marks of a happy life.

Twice in the prior four weeks I had left my home for the hospital emergency room thinking that I may not be coming back. I looked around my house and yard and lamented all of the unfinished projects I was leaving for Bethann. I also admired the diversity and color of the front yard that I had turned into flower beds last summer and wondered if I would get to see them come up again. The third time, which was the most serious, my mind didn’t go there. I was too distracted by the burning all over my body.

Visitors Bearing Gifts

Sunday afternoon and evening, I had several visitors to my hospital room. I do not remember who all came. Perhaps you can cut me some slack on that. I was on morphine and Percocet; and still felt pain. I think Vladimir was there. Irene came and brought a most thoughtful gift: a small CD/tape/radio stereo, along with the loan of 10 liturgical CDs. That helped me get through the nights. The nurses and aides all enjoyed them as well. I think Dr. Joseph Kyriakos visited me, but it could have been another doctor. There was a doctor, who is not my doctor, but a friend. I received lots of visits like that. It was interesting to watch the aides or nurses excuse themselves, thinking that they were interrupting a doctor’s visit and we had to explain it wasn’t official; he’s just my friend not my doctor.

I should have had a guest book for visitors to sign. That way I would know who visited when. Thanks to all! You know who you are. I was blessed by your presence.