Walk a Mile

You know they say that you have to walk a mile in someone's shoes to really understand them and I think it's true. And since it's impossible to actually really experience someone else's life, then I guess that means we can't really know what it's like to live their life. We try so hard to offer our advice to each other, but it seems that more often than not, the advice just does not apply to our personal journey.

I've learned that no one really understands what it's like for me to deal with all these issues with chronic illness and heaven knows I've tried to help everyone understand. Other people seem to think they know what is wrong with me and how I should solve everything. I have felt heartbroken, betrayed, and frustrated time and time again but in the end, I have to realize that I really can't expect anyone to get it. They just simply don't know. I have to press forward with the information I have been given and move forward with my personal healing journey, regardless of what others may think or say about me.

I do hope that I can remember to be patient with others and remember not to judge them as they walk their miles in their own shoes. I hope I can remember that I simply cannot understand all of the challenges they are facing and I must simply be nice...which isn't always easy when you feel like poop. :)

Riding the Waves

Healing from chronic illness, for me has much like taking a long journey by ship. There are moments when the sea is relatively calm, moments when the waves are pretty strong, and then moments when I am tossed about in a terrible storm.

The challenge has been for me to be patient through the storms and do my best to remain hopeful. Symptoms can become so difficult and debilitating that I feel I have very little patience and faith. I find that I have to let out all of my tears and frustrations, then do my best to move to a place of faith again. This isn't easy, and I find I have to be patient with myself.

During the stormy times, my prayers turn into frustrated, begging type pleadings, but I think it's ok. It's during these times that I try to rely on the faith and prayers of others. Eventually the storm seems to pass and I somehow manage to find faith again, although sometimes it takes much longer than I would like. :)

Adrenal Fatigue

I am so thankful that I learned about my adrenals!!! I mean, I am SO thankful. This has been a huge piece of the puzzle for me and in a big way. I have had crashes that would have completely destroyed my life had I not learned about the adrenals, how they work, and how to help them. That doesn't mean it has been easy to nourish these workhorses. It actually has been a tricky and delicate endeavor, especially since I am dealing with thyroid issues as well. It's an ongoing balancing act that has required careful support. I am hopeful that my adrenals will start to work better on their own over time.

It has been super important for me to have a doctor that understands adrenal fatigue. In fact for me, it has been one of the most important components on my healing journey. The traditional medical community does not typically recognize this problem and I think it's one of the biggest holes in modern medicine today. And before you think that there are no MDs who recognize Adrenal Fatigue, please know that I happen to have the smartest MD on the planet and he is well aware of this VERY important issue. Jacob Teitelbaum also talks about the adrenals in his book "Fatigue to Fantastic". There are plenty of other MDs that validate it, so just because the docs don't agree, doesn't mean it doesn't exist...it just means they don't agree. It's up to us to navigate through the jungle!!! I say this all the time but it really is up to us to pray and seek personal guidance to get the answers for our own health. There will ALWAYS be conflicting opinions.

My favorite book on this subject is called "Adrenal Fatigue, The 21st Century Stress Syndrome" and is written by James L. Wilson, N.D., D.C., Ph.D. This title almost does it for me but I think I would call it "The 21st Century Stress and Total Breakdown Syndrome." Adrenal fatigue has been a much bigger issue for me than just what we think of as "stress". I have become completely bedridden when my adrenals are not working well....seriously bedridden for long stretches.

Sometimes I feel like I want to shout from the rooftops and tell everyone how important I think it is to understand the adrenals. I think it would be fun to walk around downtown Chicago with a sign that says, "If You Feel Like Poop, You May Have Adrenal Fatigue". Then maybe everyone would go home and google the words Adrenal Fatigue and start to learn about it and decide for themselves if it needs to be addressed for them. So if you if you ever happen to see a crazy girl with that sign in Chicago, you'll know it's me. :)

Just a Little Story: Airplanes, Tears, and Fears

My husband and I were preparing to go to a piano teacher's convention in Albuquerque. This was a BIG deal for me because I haven't felt well enough to travel for years. We just finished writing a new book for piano students and he was assisting in the launch of a new piano method. It was sure to be fun, but I was certainly fearful to take the plunge.

I was excited for the adventure, though, and my chemical sensitivity was getting a little better. I set out to buy myself some cute outfits for the big trip and managed to tolerate several stores over the course of a few days. Then, things took a turn for the worse.

My sweet husband decided he needed to dry clean all of his clothes for the trip so he could look his best. This is normal, right? Well, not at our house. Since developing multiple chemical sensitivity, we have had to clear out any and all sources of chemicals and strong smells from our home. (I know it seems kooky and extreme, but it's called "survival") So when the dry cleaning smells entered my little world, it was not pretty.

It started out with a headache, then progressed to "dizzy, twitchy, spinny, bizzaro" (as I like to call it). I became so sick and couldn't sleep at night. By the time the day arrived for us to get on that plane, I was so sleep deprived and sick, I didn't think it was smart for me to go.

My husband assured me that I could "rise above the symptoms" (a term we use a lot) and make it to Albuquerque for a great time together. The car arrived to take us to the airport and as soon as I sat down, I knew things were not going to get better. The beautiful leather seats had recently been treated with some strong chemical and my ability to rise above the symptoms became near impossible.

Our little Irish driver was so fun and talkative, but all his words were beginning to muffle together as my brain fog increased. My hands and legs started to go numb and by the time we arrived at the airport, I could barely walk. I held on to my husband as he continued to assure me that I could rise above the symptoms.

We made it through security and purchased some water before sitting down. As I began to drink the water, I realized something was wrong. A super strong chemical taste flushed down my body and hit my stomach like poison. I think the water was just flushing all those chemicals right down through my body. I began to sweat and shake and feel like I was going to vomit.

Still, my husband assured me that I would be able to rise above the symptoms. He helped me get on the plane and I sat down in total fear. Moments later, a lady sat down next to me with strong perfume. That was it. That was the last straw. The debilitating symptoms were just getting worse. The plane began to taxi and I just lost it. I quickly pushed the attendant button and sobbed as I told her that I had to get off the plane. My poor husband was just stunned and said that I just could not do that to 200 people. Nonetheless, the flight attendant could see that I was very ill so she told the pilot to take the plane back.

They put me on a wheelchair and rolled me out. There I sat, in the middle of O'Hare airport, sobbing, with hundreds of people walking by and watching. I kind of felt like an animal at the zoo.

My poor husband (I know I keep saying that, but I really did feel sorry for him) had to call his publisher to let him know that he missed the flight and would have to fly out the next day. (It turns out, he had to travel for 12 hours the next day and missed the presentation.) He then forked over $80 for a cigarette-smelling taxi ride home. I sobbed...he was silent. It was not a fun car ride.

As soon as I opened my front door, I really experienced what matters in life and that's the love of the people around us. My 11 and 14 year old sons let me literally cry on their shoulders. It was a connection I will never forget.

Multiple Chemical Sensitivity

I really don't like that I have this problem. I mean, I REALLY don't like it. Most people don't understand it at all and many people don't even believe it's real. But like I said before, if you have it, you KNOW it exists.

I used to be a girl with all the pretty scented lotions and amazing scented candles until my life took this kooky turn. My chemical sensitivity began to develop along with leaky gut as I started taking huge amounts of anti-inflammatory drugs for the sinus pain.

I do believe that as I progress through my healing journey, I will heal from this and maybe even be able to step foot in a store without getting sick. For now, I try to think of myself as a caterpillar resting in my little cocoon for a season. Some days, though, I just cry about it.

Chronic Fatigue and Fibromyalgia

You can stop reading right now if you are of the camp that believes these two problems don't exist. Just because the traditional medical community can't completely explain something, does NOT mean it doesn't exist. I promise! And like I said before about Multiple Chemical Sensitivity, these things DO exist and in a very real way. Some people experience only mild forms and others are debilitated by them. There have been many times when I have had so much pain and exhaustion that all I can do is just curl up in a ball and cry my way through an entire roll of toilet paper.

This kind of pain is so hard to explain. It feels like all your muscles have been put in a freezer then placed back into your body, then your entire body gets shocked with electricity, then poked and pinched in certain areas. Add to that, this intense dizziness and light-flashy stuff. Not fun!

Just recently, I have started to understand a little more about what is going on with it all. I was at my doctor's a few weeks ago (a great integrative MD that has been wonderful in helping me to put all the pieces together) and I grabbed a book to read in his waiting area. I didn't really notice the title but just opened up the book to some random pages and started reading about Hypothalamus dysfunction. I went off to my appointment to talk about my poor adrenals (which seems to be an ongoing struggle for me) and didn't mention the book. A few days later, as I was doing some research on the internet, I came upon Jacob Teitelbaum's book, "Fatigue to Fantastic". I ordered it, not knowing it was the exact same book I had read in my doctor's office. As soon as it arrived at my door, I was excited when I realized it was the same book.

I tell that story because it seems that I was meant to read this book. It's nice when you can get some clues that you are on the right track with your study. There is a lot of information in this particular book and some of it I can't use (I would react in a very bad way to many of the medicines or herbs he recommends) but it doesn't mean this book has not been super hopeful for me. I will continue to use it as one of my reference books as I work to put Humpty together again. It has explained many of the things my doctor has been testing me for (and I am the kind of person that likes to understand why I have to take a certain vitamin or supplement).

Anyway, one thing I do know is that this book for me represents only part of the process, rather than this final perfect destination. The title for me would read, "From Total Body Havoc to Gradual Improvement, with Certain Bumps and Crashes Along the Way." But like I've said before, no one would want to buy a book with a title like that, so I guess they're smart.