Thursday, January 31, 2008

A Doctor Visit To Remember...or forget!

We've all heard horror stories about doctor visits, but this is the worst one I've ever experienced! See for yourself...

I had an appointment with Dr. B (neurologist) on Tuesday at 4:30. I decided to start this blog on the day of my appointment thinking it would be symbolic of a fresh start this year. Because I avoid going to the doctor at all cost, I didn't realize his office had moved to a new location. Lucky for me, I had given myself some extra travel time and arrived at his new location right on time. I waited in the waiting room for about 20 minutes at the most which isn't too bad, I guess. The nurse called my name, put me in a room, checked my blood pressure, and said Dr. B would be right in.

Now the time is approximately 4:55 or 5:00. Not bad timewise, I tell myself...I might be home in time to cook dinner for my family. (Really what I was thinking was...woo hoo! I got out of cooking tonight!) Anyway, 5:15 rolls by, 5:30 rolls by, 5:45 rolls by and all the while I could hear conversation outside my door. Not to worry.

Around 6:00...dead silence. Gone was the conversation and all the hustle and bustle outside my door. In this distance I could hear a quiet hum of a vacuum cleaner. Oh no! Reality sets in at 6:15 and I realize the vacuum cleaner might just mean the janitor has arrived. We all know what that means. I decide to peek out and see if maybe someone's sitting at the nurse's station. No one's there. I mean no one anywhere. In fact, the only closed door was to the room I was in. All the lights were off and not a soul in sight. I decide to follow the hallway and maybe someone would be working in one of the other offices and lo and behold, who do I find? Dr. B doing paperwork at his desk. I think I startled him. No, I know I startled him, but I was hacked at this point. His only response to my rather venomous questioning was, "What room did the nurse put you in?" My response was, "The only room with the door closed." "Duh!" is what I wanted to say. He apologized, of course and said he wasn't aware there was anyone left in the office. Being the personality type that I am I immediately thought to myself, "If you had decent systems and procedures, this never would've happened." Oh well...we finished the exam anyway and all was well. Maybe it's time to find a new doc. Maybe not. I'd hate to have to go through all the testing again.

According to Dr. B, my options at this point seem to be: increase the IVIG dosage or consider a type of chemo. No thanks on the chemo, I'll stick with the IVIG for now. Anyone else using IVIG? I also need to fast and have my bloodwork done early next week. I'm going to shoot for Tuesday. Would someone hold me to this? I know myself well enough to know that I'll just let it go if I don't have someone holding me accountable.

By the way, I ate two eggs for breakfast yesterday and I usually skip breakfast except for coffee. I noticed more energy yesterday morning, so I think I'll stick with eggs for breakfast for awhile and see how I feel. I've got a terrible cold, so soup is all I ate for lunch, and Chris made a delicious chicken and rice dinner last night. Yum! I need new quick ways to make eggs in the morning. Have any suggestions?

Enjoy the day!

Tuesday, January 29, 2008

Day One

Before I post about my life with CIDP, I want to share just a bit of information about this disease. CIDP is Chronic Inflammatory Demyelinating Polyradiculoneuropathy. It is a rare progressive disorder of the peripheral nerves characterized by gradually increasing weakness. It is caused by damage to the covering of the nerves, called myelin. It's origin is unknown and CIDP is an auto-immune disorder. There is no cure, but treatment is available. I won't bore you with anymore technicalities because you can google "cidp" and find out as much information as you'd like.

My journey with this disease began 12 years ago with tingling in my fingertips and toes. The tingling gradually worsened and then became numbness. Over a period of time, I grew weaker and weaker until I was unable to get myself up from a seated position or feel my arms and legs at all. This worsened to the point of being unable to care for myself or our daughter who was three at the time. I'll spare you the details, but it was a miserable time in my life. I was diagnosed here in my hometown and went to the Mayo Clinic in Minnesota where the diagnosis and treatment plan was confirmed.

I've had ups and downs since then, but truly believe I live a blessed life. I'm surrounded by family and friends who are extremely supportive. However, if you live with a chronic illness, you understand when I say there's an inexplicable loneliness lurking in the darkness of a disease like this one. This loneliness is overshadowed only by the hope I have in Jesus Christ. He is my strength and my rock. It is because of Him that this disease does not define me. Jesus Christ defines me!