How I See It: Reflections on spirituality, technology, and the art of everyday life

My Intravenous immunoglobulin (IVIG) experience days 1, 2, 3 Day 1 1 st , I should say that each person will have a different experience, but this is what happened to me. I am getting Intravenous immunoglobulin (IVIG) because I have an autoimmune encephalopathy — in my case we think it is Hashimoto’s Encephalopathy (HE) or steroid-responsive encephalopathy. I have been on intravenous methylprednisolone for nearly two years, but as time has gone by my symptoms have been getting worse, and it was finally decided to move me from methylprednisolone to IVIG. I must say I was not prepared for what lay ahead when I walked into the infusion center. I had done a little reading on the treatment, but nowhere did I read that before they started the IVIG, first I had to have IV Benadryl. It was explained to me that they would start the IVIG at a very slow rate of speed, then after half an hour increase the rate, and increase it again every half...

A Scary Night Last night I was lying in bed reading when I felt a pop in my head (on the left side). Suddenly the foot of my bed sprang into the air while the head sank into the ground. It took all my considerable powers of concentration to convince myself that my bed was not spinning through the air and that this was some new symptom of my condition. When my bed landed, I found that it was still slowly spinning and my limbs were all numb and very weak. I just lay there for half an hour while my book continued to play, and I thought about calling an ambulance. But I knew there was nothing they would do except charge me a large amount of money. So I lay there until I felt strong enough to get up and update my contact list’s ICE (In Case of Emergency) entry. It is now a little over a week since I returned from the Mayo Clinic and nine weeks since my last steroid treatment. My condition is getting worse by the day. I met wi...

My (1st) Trip to the Mayo Clinic. To begin at the bottom line: it has been decided to stop giving me Methylprednisolone (steroids) and instead try treating me with Intravenous Immunoglobulin (IVIG). IVIG is a human blood product. Basically, the two treatments are similar— both try to override my immune system and stop it from attacking my brain. Prednisolone is (sort of) an artificial form of immunoglobulin. The difference is that Prednisolone is man-made (in a lab) while Immunoglobulin is man-made (in someone’s body). IVIG does not have the side effects of Prednisolone, but costs a lot more and takes more time to infuse. The plan is, as soon as my insurance company approves the treatment, to give me the treatment for three days in a row, then once a week for twelve weeks, and see how I am doing at that time. How was the trip? It was a trip. I feel like I have been to the Vatican—there in the middle of the cornfiel...

The Guard was Asleep.(A Good Friday Story) It had been a long day; he was up with the sun, and then when he thought he would have a night of enjoyment, he and his unit were ordered to stand by for a special assignment. After waiting for what seemed like forever, they were marched to a nearby park. There, with the help of a trader, they arrested a radical and took him away to meet his fate. They took him to the jail and told the guard to make sure he did not escape. Now the guard was asleep. In any army in the world that would have meant death! But on this one night, the guard was safe — no harm would come to him, because the prisoner would not escape and would wake him before anyone found him asleep. Yes, the guard was asleep, but was quite safe, because the prisoner loved him and everyone. For the radical was the Son of God, who came into this world to save sinners — even the man who would nail him to the cross later that day. Previous: Prayer for Maundy Thursday ...

A Prayer for Maundy Thursday Dear God On this day when you were turned over to face death on the cross, let us remember that only you are God and only you can say what is bad or good. Help us to remember that the evil done this night led to the greatest good that mankind could ever have wished for. It is only our ignorance that makes us condemn those who killed you instead of praising them as the heroes who made Easter possible. Only you know how you perceive them, and us. So help us to know that we are here to love you and one another — not to condemn, but to love. The love that Jesus showed us every day of his life and death. Amen Next: Guard Was Asleep (Good Friday Story) Previous: Grace (Prayer for Meal Times)

My search, my Journey to the Mayo Clinic Preparing for the Mayo Clinic When I last wrote, I mentioned that I had contacted two doctors who were said to treat this condition. Unfortunately, neither of them replied. So, I began reading medical journals and reached out to several of the authors of studies I found. Two or three of them responded, advising that the best place in the country for this kind of case is the Mayo Clinic. I also found several articles written by Mayo Clinic doctors, but the clinic’s website doesn’t provide a way to contact them directly. So, I called the clinic and scheduled an appointment. I was honestly in shock — I had imagined flying in one day and out the next, but they told me to plan for a stay of five to seven business days, and that was before I even spoke to a doctor. My insurance covers care at the Mayo Clinic, but not travel, lodging, or food while I’m there. I had hoped they would review my chart and order any needed tests before asking me to c...

My Search goes Nationwide. Letter Requesting Medical Assistance My most recent attempts to contact my doctor here in Portland have gone unanswered, so I am expanding my search. I have located two doctors—one in Houston and one in Kansas City—who have experience treating Hashimoto’s Encephalopathy, and I am writing to them for help. Salutations, I am writing to see if you might possibly be able to help me. In January 2006, I began developing various neurological symptoms, including facial paralysis, right-sided weakness, numbness, gait problems, and others. Around the same time, I was diagnosed with thyroid cancer. The cancer is being treated, but the neurological symptoms have continued and are getting worse. After being told twice that I had brain cancer, and undergoing multiple MRIs, CAT scans, and other tests (including four spinal taps—three in one month), it was decided to begin treating me for Hashimoto’s Encephalopathy. The treatment involved three days of Methylpredn...