Only Drastic Measures Will Do

Hello Friends,

I want to thank you so much for all of your prayers and support over the last several weeks. I am very happy to say that my seven days of appointments and tests at Mayo Clinic in Rochester, MN are over! *Insert happy dance here :-)

Many of you have been asking about my appointments and how I am doing. I appreciate that and apologize for my vague answers, however I wanted to have all the information and they didn’t tie everything together until today. If you’re not able to read all of this, please skip down to the paragraph in italics at the end.

Day one I had some testing done for stomach issues. All of the tests came back fine. The GI doctor and rheumatologist agree that the most likely cause of my problems is food moving too slowly through my digestive tract. When this happens the bacteria in my stomach (that is normal and good) builds up and starts hurting me instead of helping me.
 
Day two I saw a neurologist who diagnosed me with chronic headaches/migraines. I had an MRI on my head to make sure there was nothing else going on. That came back fine. He suggested some medications for my rheumatologist to consider.
 
Day three they made me see the department of Psychiatry and Psychology. I was tempted to cancel this appointment, but I knew they wouldn’t believe that I’m not depressed until I went. They told me I’m not depressed and doing well. It felt like a huge waste of time, but at least they believe me now! 
 
Day four was spent in the Fibromyalgia department where I was diagnosed with fibromyalgia along with chronic fatigue (not chronic fatigue syndrome, but chronic fatigue caused by pain and not sleeping well). Fibromyalgia is often caused by a severe trauma to your body. In my case they believe this trauma is the Undifferentiated Connective Tissue Disease that has been attacking my body for the past 4.5 years. They also recommended some medications for my rheumatologist to consider.
 
Days five and six were spent attending a fibromyalgia/chronic fatigue class. It was a class that taught us how to live with chronic pain. I can’t begin to tell you how helpful this class was. I wish I would have had it 4.5 years ago! One of the things that I loved about this class is that they were teaching Biblical truth, and a lot of it! They didn’t even know they were doing it. :-) I learned a lot of things that are going to be very helpful. They helped me develop a graded exercise program that is going well so far. They also taught me how to do things in moderation. I’ve been trying to do this, but failing miserably. They gave me some good suggestions on ways to do this and succeed. I will work a little bit every day instead of working two longer days and crashing in between. I also will try to go to bed and wake up at the same time each day. I will rest when it’s time, even if I feel like I can keep going. I have a track record of doing too much and then crashing and burning. I’m trying to avoid this in the future!

Yesterday, day seven, I had my last two appointments. I met with my rheumatologist who has been reviewing all of these appointments. He prescribed a medication that is used to treat both fibromyalgia and chronic headaches/migraines. It may also help me sleep at night and it could help my stomach issues as well. I love the fact that they didn’t give me four new medications, just one. I’m praying that this one little pill becomes my “miracle pill” and what God uses to help me feel significantly better and even, dare I say, go into remission! If it doesn’t work, we’ll try something else. I’m okay with that because ultimately my hope is in the Lord and not in a pill.

My last appointment yesterday was in the sleep department where I found out that I have insomnia (no really?! *insert sarcastic voice here!) I met with the nicest doctor who told me that what I’m doing is good, but made some slight changes. I should continue to avoid caffeine and naps. Because of the pain I have a hard time falling asleep at night and staying asleep. I basically need to learn how to sleep again. I will be in bed 8 hours a night (hopefully sound asleep). If I don’t fall asleep in 20 minutes or if I wake up and can’t fall back asleep, I need to get out of bed and do something really boring until I think I can sleep again. I don’t think this is going to be easy to do, but it will be a good thing once I get there. It’s better than laying in bed for 12 hours and sleeping for 5 of them! It (I) might not be very pleasant while my body learns how to sleep again. I apologize in advance if I’m a complete zombie or cranky! Please have patience with me!

One of the most important things I have learned is how I need to deal with the pain that I experience and how I interact with others. When a person experiences pain their body sends a signal up their spinal cord to their brain that tells them they are experiencing something painful. When a person experiences chronic pain (in my case caused by an autoimmune disease where my body is constantly attacking itself) the pathways that the pain signals travel on become well worn. It’s like taking the same shortcut every day. The path becomes bigger, the ruts deeper, the grass more trampled down. The same thing happens in my brain. Every time I experience pain, talk about pain, or think about pain, the pain pathways are reinforced, which makes the pain worse. What I need to do is create new pathways in my brain. Sounds easy, right? Not so much! One thing that I can do is distract myself when I’m in pain. I can do this by reading a good book, watching a movie, being silly with friends, whatever. Anything that distracts me and helps me focus on something besides the pain is good (well, not ANYTHING, but you know what I mean)! The second thing that I can do is something that I need your help with. I need you to not ask me how I’m feeling. Yes, you read that right, don’t ask me how I’m feeling. I know this is going to be difficult, but know that you will be helping me. I’m not going to completely stop talking about how I'm feeling. I will continue to update my blog and I’ll share with my roommates and family when I’m having a bad day and need to talk. I don’t want you to stop talking to me by any means. You can ask me how I’m doing and I will respond with how I’m DOING, as opposed to how I’m FEELING. You can help distract me and create those new pathways in my brain! I also need you to hold me accountable on this one. It’s going to be really hard to remember to not talk about how I feel because it’s so much a part of my world. However, that’s the point. I don’t want it to be such a big part of my world. I want Jesus to be my world and I want to focus on Him, not myself. Will you help me do this? Will you also help me remember to pace myself and do things in moderation and not overdo it when I’m having a good day? In Morocco I learned the saying, “Little by little the camel goes in the pot.” That’s my life now. Little by little I live my life. By doing a few things each day I will ultimately get more accomplished than doing many things once or twice a week (and feel better doing it)! 
 
I greatly appreciate each and every one of you who are walking on this journey with me. I don’t know what I would do without your prayers, your smiles, your silliness and your encouragement. You’re pretty amazing! 
 
“Do not lie to one another, seeing that you have put off the old self with its practices and have put on the new self, which is being renewed in knowledge after the image of its creator.” –Colossians 3:9-10