My Healthcare Journey – Page 2

My Migraine Regimen

I have been asked on several occasions to share my migraine prevention and treatment regimen, so I decided a blog post would be the simplest way to do it. This way I can share it whenever it is needed without having to retype it each time.

The summer of 2011, I had no more than eight days without debilitating migraines. They causes three strokes that summer and multiple trips to the ER and three hospital stays. My summer culminated with being transferred to the Hospital of the University of Pennsylvania (HUP) in August for a cerebral angiogram. The heart surgeon was about to cut my chest open at Grand View, when another doctor intervened and said, “Let’s check one more thing.” I got an ambulance ride to HUP in Phila. The next day they did the angiogram. It was a grueling procedure. They saw something in my brain that they had never seen before. My adult arteries had never grown to feed my right occipital, parietal and temporal lobes. I have a single fetal artery from my spinal artery with three tiny branches off of it, one to feed each of those lobes.

I met with Dr. Scott Kasner, one of the top stroke specialists on the East Coast. He gave me a regimen to aggressively prevent migraines, since my developmental brain defect is inoperable. This regimen was developed by the Headache Center at Jefferson University Hospital, also in Philadelphia. We have made some changes since the original prescription, eventually eliminating any blood pressure medicine, as well as the Topamax (Topiramate), and adding 5mg/ daily of Atorvastatin. Where we started in 2011:

Lisinopril, 10mg daily
Topiramate, tapered up to 200mg twice a day
Aspirin, 81 mg daily
Ginger, 650mg twice daily
Denatured Butterbur, 175mg twice a day
Vitamin B2, 200mg twice daily
Vitamin C, 500mg twice daily
Magnesium, 300 to 500 mg, three times daily. (I found I absorbed Magnesium Citrate best, so lowered the dosage to 300mg)
CoQ10 100mg three times daily
Vitamin D3, 1000mg three times daily
Fish Oil capsules, 300mg Omega-3, twice daily

We learned that gluten and other inflammatories can increase the incidence of migraine. Also, a low carb diet can lead to a healthier brain, and help prevent migraine. After all, your brain is fat. I had an allergic reaction to Lisinopril, so we eliminated that. After more than five years on Topiramate, I weaned myself off of that, with little increase in incidence of migraines. I take 2 ginger capsules at the onset of a migraine, followed by one every half-hour until the migraine is gone.

I also take homemade green tea capsules, morning and evening. These are not green tea extract. I believe herbs are more often best whole. I also take cinnamon morning and evening. Green tea and cinnamon fight inflammation and help regulate blood sugar. I also take turmeric with black pepper capsules. The black pepper helps activate turmeric , which is a powerful anti-inflammatory. I no longer take to Atorvastatin. I am back on Topiramate, although at a lower dose, after several TIAs this winter. I am now on 325mg aspirin due to my aortic valve replacement in June 2016.

Ginger, Artichoke, Pepper, Pumpkin Soup!

Last Spring I was at the Perelman Center at Hospital of the University of Pennsylvania for some tests and orientation prior to my open heart surgery. I found this wonderful ginger, artichoke and carrot soup at the little lunch bar off the lobby. It was one of a couple of dozen choices. I spoke with the chef who made it and gave him my compliments. Today was my second attempt to produce something similar. My first attempt was a complete failure. It was totally overpowered by the ginger. Today, I needed to make lunch and we didn’t have any meat to speak of. We will be feasting tomorrow. I have lots of pumpkin that I froze last month, so this seemed like a simple, healthy meal for the eve of the feast.

Ingredients:

1 quart processed Pumpkin
3 cups Water
2 Carrots
~ 1-1/2″ fresh Ginger, peeled
2-6 oz. jars Cento quartered, marinated Artichoke Hearts (Cento has 4% DV sodium compared to 18% for most other brands.)
2 green bell Peppers
2 cloves Garlic
1/2 teaspoon Nutmeg
6 grinds Black Pepper
1/4 cup Olive Oil

Directions:

Thaw the pumpkin ahead of time. Pour it into a medium sauce pan. Start heating on low heat. Stir frequently. Rinse out the remaining pumpkin with the water into Ninja blender. Add the Carrots, Ginger, undrained Artichoke Hearts and Green Peppers. Pureé this mixture thoroughly, then add it to the saucepan. Press the Garlic onto a cutting board and let it sit for 15 minutes before adding it to the saucepan. Have a larger pan with water in it to set the saucepan in, to form a double-boiler. Stack them and use it like a double boiler to avoid scorching the soup. Add the Nutmeg, Black Pepper and Olive Oil. Let the soup heat for an hour or more. 6 to 8 tasty servings. It needs no salt.

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.

Franklin – Steampunking My Bathroom 6

It may not seem like much, but it was a huge undertaking for me. I finally finished painting the lines for the tiles on the upper vanity wall of the bathroom. There are five accent tiles. I painted the background color on these. It is taking me so long because my health has been not so good. I had a severe TIA a few weeks ago. We thought it was another stroke. I am still suffering some deficits from it. At any rate, it landed me in the hospital. They did all sorts of poking around and found that I have some major heart valve issues. This explains why I am exhausted all the time and fall asleep at the drop of a hat.

The latest cartoon character to join the collection is the Peanuts character Franklin. He is Charlie Brown’s African-American friend. He is Charlie’s most loyal friend. He admires his grandfather and considers him the wisest man he knows. He is located to the right of the clock.

Of the four remaining accent tiles, only two will be cartoon characters. The other two will be dedicated to Bethann’s and my passions: sewing for her; art for me. They will be a challenge.

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.

Blizzard Jonas Flaming Hash

Tuesday, we were finally able to get out and about after a fine young man with a pickup truck, plow and a snowblower, dug us out Monday evening for 20% of the going rate. We had not prepared for this blizzard. We had left our snow shovels in the shed attached to the barn at the back of the lot. We left our cars parked in front of the barn, instead of next to the house, close to the street. I was pre-occupied with cooking a hearty chicken soup to serve on the street in center city Phila. that night to the homeless and poor and those working outreach, etc. Then I got a migraine in response to the weather system moving in. Bethann was concerned about me, so she forgot about moving the cars, etc. (When I get a migraine, there is a real risk it can cause a stroke. I have had at least six strokes and over 40 TIAs. This is why I am disabled.) So I stayed home Friday evening as the storm was starting, and sent Tony and Will, TKJ’s best driver, to the city to serve.

I grew up in Minnesota. We were required to read O.E. Rölvaag’s book: Giants in the Earth in 8th grade English. I think it was because his son, Karl, had recently been DFL (Democratic Farmer Labor) governor. The most memorable thing in that slow moving plot was when Per takes what he knows is an impossible walk into the blizzard and is not found until Spring. When they venture out, they find his corpse sitting on a haystack. He had been so close to his destination, but snowblind, cold and disoriented, on a fool’s errand to satisfy ceremonial religion. It is an important piece of literature on the harshness of the environment and how it informs our values. Back to 2016.

So I go to the grocery store on Tuesday in Bethann’s car. I find I can buy avocados, fresh peppers, onions, all manner of produce from all parts of the world, just two days after the worst blizzard in 20 years to hit us! What an amazing age we live in! This recipe celebrates that. Yes! This entry is about a recipe. Here goes!

Ingredients:

4 Glugs Yukon Jack 100 Proof
~1-1/2 lbs. 80% lean ground beef
2 Avocados diced
1 Orange Sweet Pepper diced
1 Sweet Green Pepper diced
1 Sweet Red Pepper diced
2 small Yellow Onions diced
3 Red Potatoes, peeled & diced
4 oz. “White Cheese”
3 cloves Garlic pressed
Black Pepper Grinder
Paprika
Coriander
Red Pepper
Turmeric

Directions:

In a 14″ or 15″ skillet, begin to brown the Ground Beef & Onions. Chop and add Peppers as they are ready. Sprinkle Paprika, Coriander Red Pepper Turmeric as you are going along and stir in. Add the Avocados. Grind coarse Black Pepper over the mixture, as well. Press the garlic over and stir in with your spatula.
When everything is about done cooking, glug the Yukon Jack into the pan and turn up the gas burner to full. Watch it catch fire for a moment! If you’re not cookin’ with gas, have a butane lighter handy to light it up. You have to be quick. It’s only 100 proof. 😉
Grate some cheese of your choice over it. We had a little yogurt longhorn or somesuch. I grated it over the pan and covered to help it melt. Feta would work. Blue cheese would be my first choice. Whatever goes with the wine you’re serving!

Enjoy! The settlers never roughed it like this!

Living Room Makeover

Our 50 cent couch against a newly painted wall

We were told by our realtor to just let the house rot. We are in the process of foreclosure. The odds are we are going to lose the house. We are trying to negotiate a refinance, but PHH, the mortgage handling company, has never been honest, even to the point of lying to me about who owns our mortgage while I was looking at a letter I had just received from them which told me that it was HSBC, the Scottish drug dealing bank that the US Senate bailed out with no strings attached. It makes sense that PHH represents HSBC. One criminal organization represents another. I digress.

Entertainment Stand painted with Behr Ancient Pottery (N250-5) Premium Plus satin

We still live in the house. I am on disability due to my six strokes caused by migraines, more than 40 TIAs, and innumerable prolonged (at times, 20 days long) debilitating migraines that mimic strokes. I asked the ALJ, “Would you hire me?” He granted my Social Security disability immediately. We are losing the house because the lawyer I used screwed things up and I still haven’t received the two years’ back pay. (Somehow, he got his full fee based on it, though. A lawsuit may be pending. I digress again.) Back on track. Bethann and I decided that we wanted to paint the living room as a gift to each other for Christmas. This was a first for us in our over 40 years of marriage; to have that sort of idea at the same time, with neither of us having to persuade the other.

Laying out fabric on the kitchen table, to cut and sew for the couch throw and cushion covers.

Normally, I would just pick the colors and paint. Bethann would learn to like it. I know that is unusual. I have always been the color person in our house. Only once did I have to retreat on a color. That was the Rubber Ducky’s Bill Orange for the trim of the upstairs bathroom that I painted while she was at a Ladies’ Night Out several years ago. She let me leave the walls Rubber Ducky Yellow, but shook her head and said, “What? Can’t I leave you home alone anymore?” I said, “It’s only paint! These colors were big in the ’60s.” Just brings back images of a young, perky Judy Carne saying “SockItToMe!”

Bethann's recliner in chocolate brocade. We bought this for $10/yd. The walls are painted with Behr's Brazilian Tan (N250-2) Flat finish — Bethann’s recliner in chocolate brocade. We bought this for $10/yd. The walls are painted with Behr’s Brazilian Tan (N250-2) Flat finish

My recliner in rust fabric, with my cat, Skittles in the foreground.

At any rate, for this project, I actually went to Home Depot and got paint chips and little samples to try; an absolute first for me! We agreed on the colors, adjusting one, with no argument with each other. We wanted to respect the age of the house (new part: 1845, kitchen & bedroom above: 1700s) without leaving it moldering in its antebellum past. Bethann and I went to Joann Fabric with a great 50% off upholstery fabric coupon and selected fabrics for throw covers for the couch and our recliners, for about $80. It was like an ultra low budget Trading Spaces room makeover, only done right.

Bathroom to the left, Den/Office ahead, Basement to the right. I rehung that door with new hinges and reset the surface mount lock. This is all in Behr's Clay Dust (N250-1) Premium Plus Eggshell finish — Bathroom to the left, Den/Office ahead, Basement to the right. I rehung that door with new hinges and reset the surface mount lock. This is all in Behr’s Clay Dust (N250-1) Premium Plus Eggshell finish

The job included the tiny entryway, tiny back hall, stairway and upstairs hall. The job included 9 doors, 15 doorframes, and 3 windows. We have reconsidered what we hang on our walls and have opted for less. I eliminated the shelves over the windows that the former owner had incorporated into the frames. They weren’t level, and we wanted a cleaner look. I had to replace the top piece of the frame on two of the windows, because the way the shelves were installed destroyed the antique parts of the frames.

I am still repairing sagging accoustic tiles in the ceiling in preparation for painting it with high gloss, ultra bright white paint. The tiles are faux stamped tin style. I am using high powered glue in a dispenser with a long, narrow spout. I insert the spout between the tiles, at the corner where they are sagging to deliver glue on top of the tiles. Then I tighten the tiles to the frame above with a screw through a piece of stiff cardboard and leave it there long enough for the glue to dry. Then I move on to the next spot that needs to be repaired.

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.

#PTSD

After my first Tweet using the hashtag #PTSD, a PTSD & CPTSD support site followed me on Twitter and so I followed it. (The quote comes from a tweet from that site.) I have learned that there are many more out there who are experiencing the same kind of pain as I am as a result of the same kind of abuse by narcissists and sociopaths as well as other violent and traumatic situations. I have known for over a year that something had snapped; that I was somehow different or damaged. It wasn’t until I was at the Orthodox Peace Fellowship Conference, last Fall that I could put a name to it. There were a number of military people there, and a major focus of the conference was addressing PTSD. An Orthodox Christian psychiatrist, who is also a four star general, gave a definition of PTSD by listing the symptoms. I had an “O shit” moment. He had listed several possible markers, saying that one didn’t have to have all of them, but a preponderance of them would indicate that one had PTSD. Well, I had all but one.

I have never been in the military, so it came as a surprise to me. However, I have had my life threatened on several occasions. I have been bullied and lied to and manipulated by narcissistic, if not sociopathic, clergy on many occasions. This is a pattern repeated over and over by those suffering Complex Post Traumatic Stress Disorder. Another note, though is that the 4-star general is trying to get the label changed so that it is not called a disorder. This is in line with all of the scientific literature in the field, as well. What happened with me and with all the others and with all of the soldiers who were programmed to kill is not a disorder, but a natural response and survival mechanism, without which we would not survive with our psyches intact in the battlefields we face. In the case of the soldier, it is combat. and he needs to be reconditioned and deprogrammed for his new environment. In cases like mine, I cannot go near sociopaths or narcissists until or unless I am ready to boldly not accept their authority or judgment, whatsoever. This is a sticky wicket when there is ecclesiastical authority involved. But I have been told by an arch-priest who is also a therapist to stand up to bullies.

This is where the graphic and caption come in. In the summer of 2012, when I was in the hospital with strokes caused by complex migraines, I had very strange auras with migraines. One time, I had what I call “Picasso vision”. This does not fully capture it, but almost. Every face I saw was terribly disfigured. It was so convincing that I believed it was real. It was happening in my brain, not my eyes. One’s default setting is to trust one’s brain. One nurse’s aide’s face was so horrible, I thought, ‘How can she live with that?’ I know. I’m a terrible person. Then I went into the bathroom and looked in the mirror. My own face was equally grotesque. I thought, this disease has sure taken its toll! The only one who looked normal was my beautiful wife. I saw her through the eyes of love. Now, much of the way we perceive ourselves is taken from our read of how others perceive us. This works out OK if one has an unwounded psyche and is not exposed to narcissists or sociopaths. If one is, an extra wall of defense needs to go up and some reminding needs to be done, hence the caption: “What other people think of me, is none of my business.” The reverse of that, of course, is, “You can keep your opinion to yourself!” It’s to develop a bit of a thicker shell for those whose trust and loyalty has been betrayed.

For the mean time, there are places I may not go and people I do not want to see. I will never respect or trust those people after the level of lies and abuse they have heaped upon me. I do hope to be able to be in the same room without being in danger of a migraine causing stroke as I am now.