Progress!

Today is better than yesterday which was better than the day before that!

Confused yet?

For more than a month I don’t think I have had 2 consecutive days of progress, until now!

Sunday did not include more than about 3 hours at a time without a nap. But yesterday was much better than that. I was able to study for and take an exam as well as clean my room! A day like that comes about once a week right now.

Can I describe how happy I am that I feel even better today than I did yesterday? Praise God because the Doxycycline must be working!

Now I still have all the aches and pains and weird symptoms that come with Lyme, but today I have energy and a desire to actually do something besides become better acquainted with my pillow.

There’s a really good chance that tomorrow will involve heavy fatigue and listlessness. That’s how Lyme is. No, my doctor doesn’t know how long it should take or even how much better I will be at the end of all of this. I could be running around at the end of this week or I could be still laid up in bed in 6 months! But really, who in this world actually knows what’s coming tomorrow? This sometimes seems like a huge exercise in trusting God for my ‘daily bread’ as the Lord’s prayer says. I can only ask God for today’s and not tomorrow’s or yesterday’s.

One of my favorite passages is Psalm 118:13-14.
“I was pushed back and about to fall, but the Lord helped me. The Lord is my strength and my defense; he has become my salvation.”

I’m not going to lie and say that it is not gut-wrenchingly hard to go through each day like this. But God’s love is overwhelming, surprising, and above all sufficient to get me through each and every difficult day.

My Story (part 1)

I didn’t start out this way.

I wasn’t always a 2-nap-a-day, habitually plan-canceling, chronically ill person.

Once upon a time I was a high school freshman with a promising future in Volleyball. I made the B-squad (sophomore team) as a freshman at the local high school even as a homeschooler and was hooked. I loved everything about the sport and the challenge of pushing my body harder and harder every time I stepped into the gym.

I'm up at the net about to hit the ball

I got shin splints. Shocking? No, so did everyone else. We were doing 2-a-days at the beginning of the season and what kid fresh out of 8th grade spends the summer thinking about conditioning for conditioning? (not this kid that’s for sure)

Everyone else’s shin splints went away after a few weeks. Mine are still here. Every single day they ache as if I were a somnambulist marathoner. Even though it has been a solid year since I have taken a meaningful number of consecutive running steps, my shins do not seem to notice or care.

I didn’t think anything of it for about a year. Everybody has aches and pains in sports right? I pushed through and in the winter/spring of 2006/2007 I managed to play Junior Olympic Club Volleyball and Varsity Basketball with the homeschool team at the same time. I was practicing up to 5 hours a day and loving every second! Crazy? Probably. But still, probably some of the best times I have ever had.

September of 2007 I knew something was really wrong. No matter what I did, the pain in my legs got worse and worse. I was in the best physical shape of my life. I ran 1-2 miles most days during the summer and increased my vertical by at least 2 inches. But my legs hurt so bad that I couldn’t walk at all after a workout and pressing on my shins was excruciating! Finally I went to the doctor.

And so it began.

Was it a stress fracture? Not according to x-rays, but 10 weeks of crutches were still a good idea apparently. Lower leg MRI showed nothing unusual and the doctors started getting less sympathetic and helpful.

By Christmas my lower back ached and throbbed. Another round of x-rays and another normal MRI and the doctors really started getting crabby. I just wanted to get better and they just wanted me to go away because my symptoms never matched anything they could fix.

Off to Physical Therapy! I got a 6-pack but no pain relief.

I had counted I think 17 different doctors, specialists and therapists at the Mayo Clinic at this point, and none of them could do anything to help. I refused painkillers because they never really helped and somehow I knew that mental clarity was something I wasn’t willing to compromise. Some of the doctors were sad they could not help. Some instead were nasty and told me things that made me, usually stoic and paranoid of showing weakness, sob openly in front of them.

I made it through my Sophomore season, and I got my Varsity letter. I will admit that I am more proud of that letter than of any award I have ever received prior or since.

This is where I leave off my story for today and return to the present. I have an exam tonight in my Sign Language class and need to nap before that!

 

Play-dough and Pebbles

Tonight was sister bonding time for a couple of hours while my parents were elsewhere. Joyce is 7 and a spunky, perky, and truly joyful kid. Love her to death. Yes she has a play-dough doughnut with caramel frosting, green sprinkles and a purple daisy on her head! We have serious creativity here.

We had just watch Bizarre Foods right before this so I believe it contributed to the theme. Here’s my offering:

Yep it’s a play-dough Napoleon with an orchid on top!

I love the moments I am able to have like this when I am physically able to spend time with the people I care about. Through the last 3-4 years of being ill I have lost more friends than most people have. It’s hard to realize that most people are unable to understand and consequently deal with the realities that accompany chronic illnesses.

Here’s an incredible illustration of what life is like with chronic pain from

http://kidsbyhand.wordpress.com/2010/08/15/30-things-about-my-invisible-illness-you-may-not-know

(can’t figure out how to hyperlink from the iPhone app…)

“If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger. But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe. “You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?”

Here’s me hoping that someday I can walk around without the hypothetical pebble’s omnipresence!

Goodnight!

Question: do you understand? What in your life would you like to change? Or, when was the last time you played with play-dough?

I’m Nuts

I have a confession.

I’m addicted to nut butters!

Remember how I said yesterday that I was going to post pics and the recipe for my Caesar dressing and resulting salad? Well… Welcome to the world of the chronically ill! Things don’t always (or ever?) go as planned. I went to bed last night with an aching and bloated stomach and didn’t feel much better today.

So today is a comfort-food kinda day =]

Nut butters are a great comfort food for me with my multitude of food intolerances! I cannot have peanut butter and due to limited funds I don’t get cashew or other speciality nut butters almost ever. It ends up being me and almond butter, and we are very happy together!

Here’s my current lover. Trader Joe’s roasted creamy salted almond butter! I have tried all of them offered and this is beyond the best. The raw ones just don’t get as creamy. You can keep your peanut butters with hydrogenated oils, I like my butter to drip off the spoon.

See? Yummy!

I know most people probably eat theirs on bread or in oatmeal, I eat mine off a spoon =] sometimes I get all classy and put it in a cup/bowl before going at it. Sometimes I don’t! I ate my almond butter the classy way for lunch with delicious pea soup. Easy to digest? I hope so.

Right now I am on a big ol’ prescription of Doxycycline which is known to irritate the stomach in a major way. Luckily my nutritional supplement regimen has kept me relatively side-effect free! (this is coming from the person who could not handle Ibuprofen because of the side effects..)

Today is day 13 of antibiotics and I am still fatigued and experiencing a Herxheimer reaction whenever I take the meds. Hopefully in a few weeks I will be able to have some energy back! Until then, more of the good stuff:

I’m off to take nap #2 of my day! Can’t wait to maybe someday be beyond this physically degenerated state.

How do you eat your nut butter? Or do you like nut butter?

Rough Day?

Sometimes you just have to take a nap.

Farmer’s Market!

I can’t believe that after almost a year of strict ultra-healthy eating I had never been to the local Farmer’s market before this very morning! Before I get to the pictures and details, let me explain my eating restrictions so we all understand each other better.

I have Lyme Disease and have for approximately forever (possibly longer, it’s hard to tell). Because of the longevity of said condition, I have had the great pleasure of my body deciding that certain things just aren’t worth the effort. Like digesting milk, or preservatives, fake sugar, artificial colorings, white sugar, white flour.

“What?!” you say, “that’s a ridiculous amount of restrictions!!” “what’s left to eat?!”

It gets even better. Due to issues with yucky stuff (that’s a technical term) I can no longer eat any overt carbohydrates! Yep. That means zero whole grain anything (rice, flour, and the like), no fruit, no natural sweeteners, no potatoes even! And yes, I have a nutritional guy telling me to do this.

So basically I eat meat and veggies. I’m like a Steak-and-Potatoes manly man. Minus the potatoes, and the man part….

On to the Farmer’s Market!
I skipped pictures of the venue because it is held inside a cow barn during the winter months.. Not photogenic at all trust me!

Look at what I got!

Beets! And in 3 different varieties. As much of a veggie fiend as I am, I had never had a beet outside of a can before.

These were incredible, so sweet and delicate flavored with every variety having a subtly different flavor. You can be sure they were sweet and not ‘woody or earthy’ because they were declared to taste like sweet corn by my very opinionated and slightly finnicky 7 year old sister.

I also got a dozen farm fresh eggs!

I used one before taking the picture to make dairy free Caesar dressing! Recipe tomorrow when I remember to take a picture of my salad prior to inhalation =]

So how about you? Did anyone else score at a Farmer’s market recently? Am I the only one who never goes to them?