Dear people of Hillside,
I am writing this today for two reasons. Reason one is to explain the disease I have. So many people have come up to me and have asked me to write an explanation of the different things I’ve gone through medically in the past couple of years. What I have is the fifth rarest disease in the world. I am only one in five hundred people in the world that have ever been diagnosed with it! The second reason is to tell about the many answered prayers that were lifted up for me by this congregation not only then, but now.
About 10 years ago, I had developed the symptoms of type two diabetes. I was sent in for blood tests and everything was normal. Long story short, I had a brain scan and they found some abnormal scarring on the pituitary gland, usually caused by cancer treatments. I had developed Diabetes insipidus. Since they couldn’t find a cause, they gave me medicine to relieve the symptoms and called it idiopathic, meaning that they didn’t have a clue how I got it.
Around the time of that diagnosis or just before, I went out to play a round of golf. I actually shot a 38 for nine holes. I was eager to play all of the time, now. Much to my surprise, however, that was the only time I shot in the 30’s. It was all downhill from there. (or is the golf terminology uphill?) I developed balance issues in my swing, and could hardly break 60. I just chalked it up to getting older and quit playing golf!!!
Soon after that, I was getting dressed and noticed equal sized lumps in each breast. These were no ordinary lumps. They were in the shape of a rectangular cube, each cube perfectly shaped with 8 distinct corners. Again I went to the doctor and after a 3-d mammogram, they said I was fine. I just had dense breasts.
Time went on. My balance got worse. I started tripping over things and dropping things. I just thought that I was getting clumsy with age.
Then the day came in which I was suffering from severe back pain. I had what felt like labor pains in my back. They started a month apart…three weeks…two weeks and soon it was happening daily. I also was falling a lot. I slept upright on the couch for almost a year, because the pain was too intense when I would lay down. Finally I couldn’t stand it any longer. The pain was constant. I took a trip to the emergency room. They wheeled me in passed all of the other people waiting and gave me a shot of the most amazing “happy juice.” The pain stopped and I really didn’t care about anything at that point.
When my pain originally started, my evening Women in the Word group was praying fervently for me. They first prayed that the pain would stop. They then started to pray for a doctor who knew what he was doing, and also a medication that would cure my symptoms! They also prayed for patience for everyone around me. I saw extremely impatient people change immediately!
Well, that night at Metro hospital, prayer was miraculously answered, again. In getting ready to leave for the hospital (my doctor was a Spectrum doctor), we decided to go to Metro because, if I were admitted, it would be more convenient. God’s hand was in this! A doctor who was on call that night just happened to finish a book about a certain blood cancer called Erdheim-Chester disease. He started to ask me a few questions, and I decided to tell him about my “rectangular implants.” He sent me right in for a biopsy. You see, the body scans showed masses all in my stomach and brain. After reading the book, he knew better than to take a biopsy from any of those areas just in case he was dealing with the disease he had read about. If he had, I probably wouldn’t have made it, because the vicious white blood cells that were attacking most of the soft tissue in n my body wouldn’t have liked that at all. They would have started attacking with a vengeance.
In short, I was diagnosed with Erdheim-Chester disease that night. There was a drug, not approved by the FDA, that was in the making and had been proven to work on the particular strain I had. One problem: the cost was $10,000 per month, and since it was not FDA approved, insurance wouldn’t cover it. After a trip to Mayo Clinic, and being on interferon treatment for a couple of months, I had really lost control of my balance and it was affecting my memory. That is when my oncologist found a company to pay for the drug. I was a “trial patient.” I have to be on that drug for life. I have to go in every 3 months or so for full Body scans. The last two scans I had, everything was virtually clear. A little scar tissue here and there, but prayers are being continually answered!
Hillside people, along with people I don’t even know from all around the world, started praying for this medication to work. Word got passed around through the Christian community that I really needed prayers. I bumped into random people who said I was in their prayers everyday!
After about a week’s worth of the drug, I was actually starting to feel it work! People really didn’t believe me, because first, my life expectancy was 5 years. Secondly, I had no visible signs of improvement. After several weeks, however, I did start to show signs of improvement. Today, I feel amazing….so close to normal. I may even haul out the old golf clubs!
Everything about this adventure has been a miracle and very much an answer to prayers! God’s got plans for me which he has already started to show me! I’m not sure what the next few years of my life will bring, but I know God holds my future and will use me in ways he couldn’t have if I hadn’t had the difficulties brought on by this disease! Thanks again for all of your prayers!
By Lora Boogaard