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.

Thank You, Everybody!

As I am writing this, on Saturday evening, it is just Bethann and me in the house. Last week at this time, we had a house full. Our rent party was a roaring success! I was amazed at the variety of people who showed up and then there all those who sent well wishes and checks or cash with others, by mail, electronically, or the next day at church. One friend brought six other friends with him. So we made some new friends!

The evening started with Tadesse Abay offering a blessing for the food in his native Ethiopian. I don’t understand Ethiopian, but I know he did more than pray for the food. He blessed our home and family and our continued ministry. It was a real honor to receive this blessing from such an honorable and godly man.

Kevin Paige was an amazing minstrel. He started out playing the ukulele in the kitchen. He moved to the front parlor and played more on the ukulele. I walked through at one point and he was playing “The Girl From Ipanema” and a half dozen little kids were dancing like it was a rock song, looking like the kids in the Charlie Brown Christmas special. It was a happening! He switched to the guitar and then to the Dobro, at some point. Deacon Herman played a few songs by Dylan and a couple of his own. It was great. It wasn’t like a concert. It was party music. Conversations kept going. Kids were dancing and playing.

We met these friends over the span of nearly 40 years, but there is one thing they all have in common. They have all been involved in the work of The King’s Jubilee at some point, from the first person who responded to the first ever newsletter in February 1989 to the friend who drove me home from Phila. in the TKJ-mobile two nights earlier.

We received over $4,000 in gifts plus a sizable gift from the church. We used $500 as a first fruits offering to help a neighbor restore his electric service; and $300 to The King’s Jubilee to buy a computer for a recently homeless, faithful volunteer who needs a laptop for community college.

I started negotiations with the mortgage company for a loan modification to hopefully lower the interest rate, so we can manage better. I mailed in the payment to cure the default. When I spoke to the loan modification counselor and told him about how much we received in gifts, he was amazed. I told him that we have a lot of friends who care. We are quite frankly amazed! We need to send him a copy of the blog entry advertising the rent party and other evidence so the bank knows the story.

There are some takeaways for me from this. The first is that when one gets in trouble, one should not just go down quietly. I have heard of people watching their neighbors being evicted and they didn’t have a clue beforehand they were in trouble. If they had, they may have done something to help. People got through the Great Depression by working together. Of course, back then, people didn’t have cars, air conditioning, in-home entertainment and large suburban lots to keep them separated from one another. Make an effort to get to know your neighbors. Then there are people who work hard and still fall on hard times, but don’t have any friends who can help. This brings up the problem posed by the question, “Who is my neighbor?” We all know that Jesus answered with that it is the one who is in need, according to the parable of the Good Samaritan. That is where ministries like The King’s Jubilee come in. It is also why we need to protect our safety net as a society. If we can come together to help a friend or neighbor, why can’t we learn from the parable of the Good Samaritan and as a society help every neighbor?

We are trying to write thank you notes or send thank you emails to all who gave. We are not sure if we are remembering all who gave, since there were bills slipped in handshakes and stuffed in pockets. Just know that we are very grateful and feel very blessed to be surrounded by such a community of caring and generous souls. May God bless you all!

Rent Party at Charming House

When a realtor describes a house as charming, we have four words of advice: RUN FOR YOUR LIFE! Our house is charming. It is possibly the oldest house in town. The new part was built in 1845 to be the hotel for the railroad when it came through. The last owner was an Irish woodworker. He did some lovely work on the trim. He made a nice back door and beautiful window over the kitchen sink. Why he used single pane glass is beyond me. He restored the hardware to period. He did level the floor in one of the rooms. He made it into one house out of three tiny apartments. (sort of) It still had three electric meters with two wire, knob and tube and old romex to much of the house.

The oil burner was on its last. The old iron pipes to the upstairs bathroom were mostly occluded. The drains weren’t much better, but the switch plates had fairies and waterlilies on them. The wood trim in the kitchen has charming little crosses drilled in it. I have basically replaced the heat system, the plumbing and the electrical service. I am working on rewiring, bit by bit, sorting out the mess. I won’t even start on the shape of the barn. But they say the value of real estate is mainly location. It is a great location.

We were rebuilding the barn to make the ministry and the business more efficient. Then I got sick. That messed everything up. There have been a series of setbacks. Bishop Thomas really wants to see a team of college kids come here to help finish the barn. I don’t know how that is going to happen. Bethann lost her job last summer. We have to pay for Cobra health insurance out of pocket. That takes more than her Unemployment Compensation. We had the court case against the city to keep the ministry going. that put the business on hold and hurt the business. We were both sick around Christmas, so that hurt the business. I was very sick last month, so that hurt the business again. We are on the verge of being able to make some major progress in helping the homeless in Philadelphia, if we had a basic facility there and could be full time working at that, instead of being distracted by the icon business. At the same time, we are on the verge of possibly losing our house, losing our current base of operations, and joining the ranks of the homeless ourselves.

So we are making an appeal.

We are having a rent party this Saturday evening, March 16, starting at 6:30. Since it is Cheesefare Sunday next week, we will be serving vegetarian chili, “Tender Hearted Shepherd’s Pie” (vegan), some cheese and veggies, chips and dip, dessert, etc. The $10 cover charge includes the food and soft drinks. Beer and wine will be available for additional donations. If you want to play an instrument to add to the festivities, please make it unplugged. Kevin Paige is bringing his guitar and his keyboard and his great talents to make music. We are hoping that the Ackers will favor us with some music as well. We are clearing out the furniture, so if you want to dance, you may.

We live at:
27 North Front St.  (in the middle of beautiful downtown)
Souderton, PA 18964

Call or email to let us know if you plan to attend, so we know how much food and drink to prepare.
phone: 267:497-0267
cranford@shoutforjoy.net  (If you can’t attend, but want to help, you can Paypal gifts to this email. If it is designated as a gift from one Paypal account to another, neither one is charged fees. Thanks! God bless you!)

It’s a cheap date for a good cause. We are going to try to have green beer in honor of St. Patrick’s Day. Hey, I was tickled that the first one to RSVP to say that he was coming was Philly rock legend Kenn Kweder! Please come join the fun.

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.

So Itchy I Can’t Sleep

It’s nearly 3 AM and I haven’t been able to sleep yet. I have a cold with a bit of a runny nose, but it is my itchy skin that is keeping me awake. When I finally finished the Prednisone, on December 15, the hives were disappearing and did not flare up; that is, not until a week later.

On the 23rd, I went to the doctor. She told me that the water pill that I took in conjunction with my blood pressure medicine was sulfa based. I am allergic to sulfa, but had not reacted to this medicine any time in the last year since I became allergic to sulfa, as far as we know. We switched the blood pressure medicine and dropped the water pill. I also got a fresh prescription of Atarax for the itch. The change did not help, nor did the Atarax. I was taking it every six hours along with two Benadryl staggered between doses. My muscles were tired and weak and I was grumpy with unpredictable mood swings.

On Tuesday evening, Dec. 28, Bethann told me that I was tired, grumpy and unusually hard to live with, so I should call the doctor (since I was obviously still sick). The next morning, I called Dr. Jonathan Cohen, the infectious disease specialist. He had told me to keep in touch. He took my call on the first try. I told him that Bethann had told me to call him, since I was tired and grumpy and hard to live with. I told him that the hives had reappeared. To that, he replied, “Interesting.” He said it in that Dr. House way that you never want to hear from a doctor, because it means that you have entered uncharted waters. He also told me, “Dude, you’ve been sick since I first saw you in the beginning of October. You have every reason to be tired and out of sorts – wearing the hair shirt.” I asked him if he could give me an answer that Bethann would like. He started with, “Well you should be feeling a little better since you talked to a doctor.” (Dr. Cohen can be a funny guy!) He then told me that I should marshal my more positive energies that he knew I had and try harder. He told me to go back to my PCP sooner than scheduled and to make an appointment with an allergist. He told me to move quickly on that, because allergists are notoriously slow and I would be lucky to get an appointment within 30 days. He also told me to go to the city to find an allergist. My case was more exotic than what any of the allergists he knew here had ever handled.

I saw Dr. Oswald on Monday, Jan. 3. Since the side effects of Atarax had gotten worse and it was no longer effective for the hives, she switched me to 5mg Xyzal per day and 20mg Famotidine (Pepcid AC) twice daily. This regimen took care of the side effects, but still isn’t altogether effective against the itch. Since I started writing this post, I looked up Famotidine on the NIH website. Interestingly, among the possible side effects are itchy skin and hives. Like I keep on saying, this whole episode is like playing Whack-A-Mole!

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.

PICC Line Installed & Biopsy Taken

It was Sunday morning. On any other week, I would be in Matins at St. Philip Antiochian Orthodox Church, Souderton. Instead, I was being wheeled down to a room with a CAT scan machine. Steve even headed my gurney into the room in the correct direction. It was a tight fit. The room obviously had not been built with this huge machine in mind. They gingerly slid me from the gurney onto the bed of the machine. They fed me into the machine feet first.

While the machine was imaging the area, Dr. Osuego carefully snaked a line in to take a biopsy of, or a sample of the fluid from the sac that had attached itself to my spine at T10-T11. He then installed the PICC line from my left forearm for the intravenous antibiotic. It was going to be a long haul.

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body  the extremities. *

He was a sweet, gentle, middle-aged man, with what sounded like a hint of a South American accent with kind eyes. I thanked him for working on a Sunday morning. He was cheerful and that made all the difference. I don’t remember any unpleasantness in the procedure. I just remember this beautiful man.

Accidental Health Advocate

On Saturday, October 16, one of the last things the host of Marketplace Money on NPR said was something like: “Before you go to the hospital, you should make sure you have a health advocate who can help you through the process and look out for your best interests.” She did not say how to find such an advocate or what his or her qualifications would be.

Dr. Jerry Burke became my health advocate. It happened in an ad hoc way. He heard that I had been to the ER and took a look at my x-rays and such. When he heard that they had read this as cancer, he intervened. He asked the radiologists if they had read my health history. Cancerous tumors on the spine virtually never are primary cancers. They are spin-offs from a cancer someplace else that is not responding well to treatment. He pointed out to them that I had no history of cancer, but did have a history of staph infection. He told them to get me into the hospital and start treating me for infection. They could still take their oncology biopsy if they really wanted to. It just would be a good thing if they didn’t let me die of an infection while they were waiting to do it. He kept pushing, going so far as to call my primary care physician to persuade her. She called me on Saturday, Oct. 23, to tell me to go to the hospital.

I was not aware this was happening behind the scenes. This was just the first time Jerry saved my life.

(The header photo is Jerry at the birth of his son, Nick.)