Ticking People Off?

Ok, so my last post was so sweet and lovely about people, but today I'm feeling claustrophobic. As I have been working to heal chronic illness, I have REALLY needed my space most of the time. It is difficult for me to sit and talk with someone for very long and I find it very hard to help them understand this.

Some people really want to help and their intentions are pure but really what I have needed is to be free from as much general social interaction and expectation as possible.

The best service I can get right now is a quiet little, brief love offering...e-mails being the BEST! I really need my private, serene space so I can mediate, pray, and take the supps that are helping the healing process.

I really don't want to have to tick people off, but somehow, I have to let people know...poop.

One Conversation

Reducing seven years of debilitating, chronic illness into one conversation is like trying to fit a tent into a jar. You can roll it, smoosh it, and try to shove it in, but in the end, it just can't be done.

This kind, lovely new neighbor of mine came over to see if she could do anything to help me. The minute she sat down, I knew she was compassionate and genuine. She listened intently as I stumbled over my words as I tried to explain all this...

But how do you help someone really understand that you've been through hell and back several times? How do you make sense of the roller coaster ride that it is? How can you possibly express the pain on the inside that is so completely unapparent on the outside? How do you help them see that just because you may feel better one day, does not mean that you have made it through this difficult journey and have now reached the other side? How can you help them realize that this illness is the hardest thing you could have ever imagined, yet wouldn't change it for all the life lessons you have learned and the new person you have become?

It just can't be done in one conversation. I always end up feeling so unfulfilled. All my experiences just end up sounding so trivial. I really would like to just sit people down and have them watch a little movie of my life, with all the music and special effects to give it the impact it deserves. But no one can or should take on that kind of a burden. In the end, I find it's best to say as little as possible, while still helping the them to understand in a way that will satisfy their desire to know. It's difficult, and I have to learn to let it go.

The only time I feel truly fulfilled in conversation is through prayer. That's it. Through prayer, I know that I am completely understood. Through prayer, I can feel comfort knowing that my deepest, darkest places have been seen and that my life movie has been watched. Through prayer, I know I can receive total and complete validation. Through prayer, I know I can receive the guidance and help that I so desperately need to make it through this.

Back to my neighbor though...

People like her teach me. They teach me that you don't have to completely understand someone's journey before you can offer love and compassion to them. They teach me that although we are limited in our ability to take away the suffering of others, we can offer a listening ear and a kind word now and then. They teach me how important it is to be genuine and caring toward others as we ride through this bumpy journey called "life".

I want to be just like her.

The Battle of "The Shoulder People"

I have two people on my shoulders.

The guy on my left has a dark rain cloud overhead and is saying:

-You CAN'T do this.

-It is impossible.

-Look, you've been trying so hard for so long and you are still sick.

-People live there whole lives sick. What makes YOU think you should be any different?

-Just give up.

-Even if you were able to eventually get better, it would take so long that it's just not worth the work.

-You really can't figure it all out.

The guy on my right has a sun overhead is saying:

-You CAN do this.

-The body CAN heal. It just takes patience, work, and time.

-You ARE meant to get well here on earth.

-You CAN be guided through careful planning.

-Don't give up. You will see the rewards of your efforts as you continue in faith.

-Learn to be careful, patient and let go of the fear through the dips.

-The things you have researched and learned of are true.

-You ARE receiving help to navigate through it all...more than you know.

-You will look back and see the colorful picture that has been painted through this hardship.

The hardest thing is that it is so much easier to give in to the guy on the left. His way is just so easy and requires no effort on my part. The guy on the right tells me things that are hopeful, yet difficult. I kind of wish he would just say, "It's all going away and you will be better by morning!"

I guess all I can do is continue to fight the battle. I will do my best to pull through to the place of hope and listen to the guy on my right.

Just please, no carrots dangling over my nose!!!

Wild Goose Chase?

Today, truth be told, I feel like I am on a wild goose chase trying to get better. I am in a TERRIBLE flare up and I feel little hope for recovery. The smiley face on humpty dumpty is making me mad. I just want to change it to a big frowny face and add some tears. This is so hard.

Baby Steps

When I say I have to take baby steps, I really mean BABY steps. My body is so deficient in nutrients, it's crazy, and you'd think that it would be just perfect to add them in and, poof, feel better. But it doesn't work that way for me. Every time I take anything, my body reacts in some crazy way. For example, yesterday the only change I made in the daily supplement regimen, was that I added a half of a magnesium. Today I have felt like I have the flu, along with serious dizziness, itchiness, twitichiness, and all over pain and weakness. My husband is convinced that this is all MS...but whatever...I'm not sure it really matters what label traditional medicine would put on it anyway.

I think next time I will only take one fourth of a magnesium. I'm trying to figure out how to move forward and progress, without feeling too bad in the process. It is so hard. My MD just says to go as slowly as I need to.

Will I ever get better this way?

Last year, I decided I was so darn sick of being sick that I decided was going to flippin get rid of these infections once and for all. My mom came to stay with us while I took antifungals and antibiotics (natural ones for the lyme) and minerals and ginger and aloe and blah blah blah, and I ended up getting so sick I couldn't leave the house for 6 weeks (except to go to the hospital a couple of times). I had to quit teaching piano and choir (which I am sadly taking a long term break from at the moment) and suffered a hell that only my mom, husband and kids know about. I never want to go through that again.

I would just never touch that stuff again, except the problem is that all of my lab work and information, shows that I do have these infections, that my detoxification systems are impaired and that I am deficient in many nutrients that need to be replenished. On top of all that, my endocrine system seems to be all over the board. It feels impossible to make sense of it all.

All I can do is continue to move forward, taking one baby step at a time. I will do my best to believe that I CAN get better and hopefully my body will continue to slowly recover, even when it doesn't feel like it.

Chutes and Ladders

Yesterday I played a game of Chutes and Ladders with two of my kids. I have never liked that game. I didn't like it as kid and I don't like it now. I have always felt so frustrated with this idea of moving forward, just to be let down on your next turn. To make matters worse, I was so disgruntled and distracted that I kept going the wrong way. I really just wanted to quit the game altogether. Ugh!

I decided to keep going so that I didn't have two very disappointed kids on my hands, and just as we were finishing up, my husband mentioned how much this game is like the process of healing chronic illness. Just when you think you are making progress, you get pushed back. Just when you think you have reached a high point, you fall down again. At that point you can either choose to quit the game or pick yourself up and spin again.

Another lesson to learn from this game is that it really doesn't help us out to compare ourselves with other people. We are each moving along the game board in our own ways. We are individually experiencing ups and downs and working out our own movements. (Just because I can't eat cheesecake right now, doesn't mean that I should be mad at my husband for enjoying a slice now and then.)

Of course, that doesn't mean that we shouldn't be here for each other to offer help and love, but it does mean that we should not be competing and comparing as we each play our own game. The great thing, is that if you look at it that way, discouragement can give way to hope, frustration can give way to patience and perserverance, and competition can give way to personal guidance.

So here's a poem I wrote that I think I'll set to music (and send to our piano publisher)

Yesterday, I played a game with ladders and some slides.

We moved our pieces 'round the board

And laughed at all the rides

But then it started going bad as smile turned to frown

Cause just when I had neared the top,

I had to slide way down

The competition soon became just selfish for us all

The worst of it, was how we hoped

To watch each other fall

Eventually I lost, then vowed to never play again

It really stinks to play a game,

You feel you'll never win

But then I had a thought that'd bring me guaranteed success...

I'll just play "with" and not "against"

And set to do MY best.

Looking Back

I'm feeling some gratitude today as I look back and see how far I've actually come. When you are in the middle of all this and you still feel crummy at times, it's hard to remember the successes. So today, I'm going to be thankful for all that I've learned and overcome.

The Whole Picture

So in dealing with chronic illness, I've come to realize that many of my body systems have run amuck. As I strive to move forward, it's difficult to keep my mind on the whole picture. I have found that something grabs my attention for a while but then I find that I have to step back again to look at everything. It's really kind of hard.

For example, it seems to be an ongoing game for me to try to balance the hormones, and I don't know if they will ever be totally balanced until I can get these darn infections out, but nonetheless, sometimes they are so off that I absolutely have to address them. When my thyroid or adrenals are haywire, there's no way my body can deal with detox or killing infections. It seems that I focus my attention on balancing those hormones for a time, but then I have to come back to addressing everything else again. It's really frustrating to know exactly what to do and when to do it, but I guess I'm learning as I go.

To help me with this process, I have found it really helpful for me to keep a record of my health issues and plan, to keep me focused on this big picture! Keeping records also gives me hope that I CAN get better even if it takes a lot longer than I would like.

Carrot, Anyone?

I recently moved across the country (a HUGE undertaking for a girl dealing with all this stuff) and I was going through my old journals today. I'm not sure if it was good for me. In fact, I read through an entry from about 5 years ago, when I was just fresh on this chronic illness journey. I had so much hope for a quick recovery back then. Ugh!

Sometimes it feels like hope is just a carrot dangling in front of my nose. But it has to be more than that. I have to believe that I CAN straighten all this out....thyroid, adrenals, total hormone havoc, leaky gut, fungal infection, lyme, chronic fatigue, fibromyalgia, MCS. Is it possible???????AAAAHHHHHHHH. All I can do is pray and hope and work hard, I guess.

Right now I am trying to get the vitamins in to prepare for a leaky gut protocol. I have such a hard time putting ANYTHING in my body so I have to go super, super slow. I have been able to get in the B12 and today I tried magnesium. We'll see how that goes.

Finding Gratitude

So I'm over my pity party and I have decided to move past it for today...I'm not saying I won't be there again, of course, since this whole process is like riding waves. It seems to help me to let out my frustrations, then do my best to move to that place of gratitude.

Chronic Illness has a way of teaching you amazing life lessons in a very deep and personal way. Because I don't run around shopping everyday like I used to, I find these really sweet and simple moments when I can just read about, meditate on, and listen to the lessons I need to learn. And gratitude seems to be a recurring theme.

Brown Rice and Health Coaching

It's so funny. My diet right now is pretty much brown rice....that's all I can tolerate! In fact, my chiropractor was even surprised when he tested me and found that I can't tolerate most foods, including vegetables. Of course, I know that fresh fruits and veggies, whole grains, and lean protein sources would be so good for me, but I'm stuck. Stuck with brown rice.

I found this little wellness coach on line today. I was all excited, because I'd like to enjoy a little upbeat coaching now and then, until I realized that she recommends not eating rice and salt. The salt has saved me with my poor adrenals and if I cut out the rice, then that would leave me with nothing to eat. Period.

Can we really coach each other??? I don't know. Maybe the best health coaching we can give each other is this:

1. Believe you CAN get better.

2. Pray for guidance and inspiration to know what to do.

3. Study and learn about what is out there.

4. Develop an organized plan and then do your best to stick with the plan. Pray for guidance to change things up when needed.

5. Be as patient as possible (at least try to fit patience in there between sobs) and never give up!

I'm not saying that we can't really help each other and I think it's great that people are trying to help others overcome chronic illness...it's just kind of complicated and never quite as simple as we wish it would be.

Hopefully one day I'll be able to eat food again, but until then, I'll have to keep my rice and salt on the menu. :)

Discouraged

Today I just feel so hopeless. The years of working through this are making me feel so overwhelmed and frustrated. I feel like I can't eat ANY food, go ANYwhere or do ANYthing without getting sick or having some icky, stinky flare up. It feels like my body is a burning fire of immune dysfunction and havoc and I try and try and try everything. I don't think there is a thing on planet earth that I have not tried and studied about. I work and work and pray and pray and try and try. Every time I try to take a step to improve, I just get sick. My body reacts to every single dang thing I put in there. It is so confused and mad at me. I am so sick of being sick. I am so sick of being sick. I am so sick of being sick. I don't want to complain, but my heart aches almost as much as my body. Please, bring me success. Please bring me success.

Please bring me success.

I feel like I know all the garbage that's in there and I know all the jumbly mess that needs organizing, and I even know all the great techniques for getting it all fixed but for some reason, my body has to make every single dang move I make so hard. Why can't I just take a nice little anti-fungal and "poof" the fungal infection is gone. Or why can't I just take a little thyroid medicine and "poof", the whole endocrine system works like a beautiful symphony? Why can't I take some simple little aloe vera juice and have it so warmly and lovingly coat my wrecked gut?

I'm sure that self pity is not where I want to stay, but this is where I am today, and I want to be honest. I pray that tomorrow I can wake up to some success and hope.

Supplements, Supplements, Supplements

I have boxes of them. In fact, I have spent thousands of dollars on the process of trying to figure out what will work for me. I wish I could say that I just say a little prayer and then know exactly what to take, but it just hasn't been that simple. I have done muscle testing, MSA testing, and other energetic type testing but I still find that some things work and some things don't when they actually get into my body. I know that some things take time to get in and help, but it's hard to know, I mean it's just really, really hard to know what will help the healing process. And anyone who says otherwise is living some other reality than me. :)

In the process of trying to find things that help me, I have certainly found some amazing gems, but I would hate to even recommend anything right now, because I think we are all different. It is up to us to personally research the products, then do the best we can to take what we feel will help us.

I will say though, that I really don't think that there is any ONE company or any ONE product that would be considered the cure-all! I have to do my research, pray, then pick myself up and try again when I find that something doesn't work. If at first I don't succeed, I just try, try again!

The issue of paying for the supplements is another story. When I am better, I want to raise money somehow for people who are sick, because it's a dang stinkin' reality that it takes money to buy those supplements and pay for those holistic doctors. Ugh.