Faith Community Online

What is my disease?

Filed under: Blog — Pastor David Apr 18, 2009 @ 11:44 am

I told the church on Good Friday of the condition I was diagnosed with some 2 1/2 years ago. The disease is called Genetic Migraine Disorder. Most people hear that and assume that I have headaches all the time. That is not what this disease is. It is one of the “invisible diseases”, as doctors call it, because there is no apparent problem from the observer’s perspective.  I have people say to me after hearing of this brain disease, “You look fine”. I do not seem to have any problems at all. That is the deceptive part. My brain is sending the wrong messages to the wrong parts of my body on a regular basis.

My vision gets blurry and smoky. I see black dots or white flashes of light, or other things that are just weird. Sometimes my eyes shake, or I get real dizzy. I lose my balance all the time.

I have had doctors check my teeth–they are fine; my stomach and other organs in that area–they are fine; my knees–they are “somewhat” fine; my back–it is fine. All this due to extreme pain I’ve had in those regions. Yet nothing shows up from a MRI or other scopes they have tried (I’ve had them all, wow!). That was the frustrating part. We did endless research only to find out I do not have anything wrong (cancer, tumors…). I have a brain disease…ohhh!

I’ve had amazing advice from many people. Some of it good and some of it (in light of what I have learned from my doctor) almost feeling ridiculous. Well meaning people often give me books, or their doctor’s name, or some new secrets in herbs or health foods (even sea weed!). However, the soundest advice really comes from doctors who actually KNOW what this disease is. Most doctors don’t know much at all, if anything, about this disease. That also was also an amazingly hard part about my journey with this illness…how many doctors did not have a clue what was wrong with me!

Finally, I met a doctor whose name I will leave anonymous. He correctly diagnosed me and I have been on his program ever since which includes periodic check-ups. He said to me, “Keep active no matter what!” This was against everything I was feeling. I thought I needed rest and should “take it easy”, but the easier I took it the worse I became. He said the activity is crucial because it keeps my body in a blood flow of health. Due to his program, there are many foods I cannot eat. At first this was deeply disappointing, but now I have adjusted and am just fine.

Does the pain ever go away? Yes. I have a few hours here and there when I feel completely normal (whatever that means) and I even think I am fine! But soon enough the pain is back to remind me that this incurable disease is present.

Do I struggle with self pity? At times, but gratitude is the cure for that deadly attitude. I have too many blessings to fall into the trap of self-absorbed, meaningless, pity feasts. That is worse than the disease. Praise to God and thanks to so many others is the only attitude that is right and truly frees me to accomplish more.

If you want to know more click the link. It will explain more than I want to tell or take your time describing.

In conclusion, prayer, friendships, and knowing my life’s purpose are the main medicines I ingest every day. I would rather be healthy spiritually than physically any day!

I hope these words find you spiritually fit, and full of God’s love and grace.

Your friend and Pastor, David