Being Small

Small people can be having a hard time and can be even be tempted to lie about their weight.

Do not ever covet illness to size down. I'm below my high school weight by about twenty pounds, and it's uncomfortable.

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My First Lyme Support Meeting

A few months ago, I was feeling very isolated in my diagnosis and treatment of chronic Lyme disease. I was desperate to connect with other people like me. Through a Google search and email correspondence, I swiftly became part of the Lyme alliance for my state. What a blessing it was to have a few people reply to my email and welcome me in. 

My husband and I went to a Lyme disease support meeting for the first time last weekend. Before then, I had been too sick to make it to a meeting with symptoms intensified by IV treatments. I was excited to meet other people with Lyme, face to face. What would they look like?

Since I was going out (which I seldom do besides weekly church and for treatments twice a week), I decided to put myself together. I've developed my adult sense of style while browsing Pinterest on sick days and like to think of myself as a classic, comfortable, thrifty, closet fashionista. It was fun to throw a look together and feel like I looked nice, with a burgundy Art Deco printed tunic, dark wash skinny jeans, brown Oxford shoes, and a cream-colored blazer. I used my Saturday energy to do all this and basic hair and makeup. My sweetheart is classy and handsome always without even trying, and I'm always pleased to be beside him anywhere we go. 

*wistful sigh* :)

Our (admittedly infrequent) dates have leaned heavily towards function instead of frivolity the past few years. Doctors offices, outpatient hospital visits, running a necessary errand...oh yeah, we're exciting. So off we went. 

I was so glad my sweetheart wanted to go. <3

I have never been to group therapy, but walking in, it felt like that. There were a circle of chairs, "Hello, my name is" stickers, a sign in sheet, some cheerful posters on display, and fliers and bracelets for us in the Lyme initiative's bright green color. When people came late, every one of us moved our chairs back to let them into our collective circle. 

The board of directors is made up of people with Lyme or caregivers of people with Lyme. The people who came for support were well enough to come that day, but we represented only a small percentage of those affected in our state. This is shocking, because I bet there were twenty of us. From feeling alone to being in a room with fellow sufferers that didn't come close to representing us ALL really surprised me. 

After announcements and passing around articles that had recently been in the news about Lyme, we got started on the support part. There were about ten newbies, and it fell on me to go first.

I told my story. My husband whispered hints to help my Lyme brain piece the story together when I forgot things, but he insisted I do all the talking. As I talked, my gaze dashed between nodding heads, affirmative changes in posture, understanding eye rolls and sighs, clicks of the tongue, and heads shaking in disbelief and familiarity. I knew they totally understood me. 

I finished telling my story early. It was unlike any time I have ever told my story because I got an entirely empathic and believing response. Several people asked me questions. I loved the openness. There were no apologies, well wishes, or advice (they knew these are often more discouraging than encouraging). It was like I was with people who had known me a long time.

I felt that that as soon as we started talking, we bonded as a group.

Certain familiar themes kept coming up as people talked around the circle:

-kids and spouses being affected emotionally and physically (with the actual passing on of the disease)

-putting so much money into treatment

-losing jobs or quitting, and coworkers believing it's all in the sufferer's head 

-people judging, giving unkind advice, calling the sufferer a liar, or telling them to straighten up

-having the infection for decades without knowing it

-new infections with the tell-tale bullseye rash and the sudden shock of being unwell

-not knowing what to do next and thinking of giving up

-fearing for your life

-pressing forward anyway

Our symptoms were the same, but different. We each had our own fingerprint, so to speak, but the overall pattern of devastating fatigue, mental changes, and body symptoms recurred in each of us, I felt. 

I looked at us. Professionals (some, fallen professionals who can't keep a job). Parents (some with young kids who are deeply affected). Young adults (who don't hang out with friends because they're too tired). Senior adults (some quick to laugh, some quick to balk). As nicely as we clean up, we aren't the same people we used to be. 

We were all dressed up and looked put together because of hope. We portrayed wellness because our histories didn't set us up to know how to portray sickness. Some admitted to being fakers: we peeled ourselves out of bed to be to this one o'clock meeting, and we would rather be at home in pajamas. But we loved seeing a room full of others who understood and could help. And even if we always would suffer, now somebody else knew how we suffered. 

One newbie in the group was an observer who has actually overcome Lyme. (!!!) She is attending support meetings around the country and may become the Susan Komen of Lyme disease! (Did you know that annually in the U.S., 200,000 people get breast cancer and 300,000 new cases of Lyme are reported? Yet people don't hear about it, have rallies and races and research funded. Shocking!) There needs to be more awareness and intervention. I hope this woman gets all she needs to spread awareness so more research can be done and insurance will acknowledge and assist paying for treatments. 

Also, if the scientific community can get a new drug called Curza tested that obliterates biofilm-encrusted colonies of superbugs, we could theoretically have a cure in a few years. The medical community listens to the scientific community, and the pharmaceutical people listen to the medical community. 

We gave each other insider tips and encouragement; some were more desperate for help in that way than others. Applicable advice can help. We are all in different stages of treating, grieving, and acceptance. 

We finished the meeting by watching a screening of the Lyme documentary "Under our Skin: 2." It was informative. I had no idea Lyme was ALL OVER THE WORLD!!!

After that, I spent about a half hour with a woman who had been on the news earlier that week. She is part of the group and has a similar story to mine. I picked her brain about babies and Lyme (bless her, she lost a baby in utero due to Lyme). Our families are aging faster than we want them to. We connected over how baby hungry we are and that we are falling out from our peers who are still carrying diaper bags and have energy to do play dates and go to lunch. She said she does not have the emotional energy to keep up friendships very well, and that struck me because I don't either, but have never been able to articulate it so well. Before, I felt faulty for not having an ever-bubbling spring of emotional energy. What a relief to know I'm not the only one!

At the end, I appreciated what one of the board members conscientiously asked of us: "If you feel you are physically able, will you please help stack the chairs?" I was no hero and lusciously felt no pressure to help; I had just barely plopped down into a chair because I felt the blood drain from my head when I had crossed the room towards the door. 

So that was our support group adventure. It could have been a two hour thing, but we made it into a four hour event. I was bushed. 

My taller half was so glad we went; I was so glad he took me and that I didn't have to report to him what I learned. What a blessing he is to me. I love him so much. 

I think the take-home messages I took from my experience at this meeting are:

1) I'm not alone. WE are not alone! Can I shout that from the rooftops?!

2) My sweetheart got to know other spouses and other people's stories, so he knows it's not just me, or him taking care of me. Being a caregiver is so difficult and isolating too; I'm glad he received support and validation in meeting others too. 

3) Good things could be coming pharmaceutical-wise and awareness-wise. 

4) I met new friends face to face who empathize with me.

5) I have access to an online support group forum now. We continued the conversation online. There is a feeling of love, support, and community. We are strong and powerful together, and we have each other's backs. 

I look forward to more Lyme support meetings. In the spring, there will be a group party. Our kids can play with other kids whose mommies or daddies are glued to the couch too. Supportive family members can connect, and people with Lyme can interact and compare notes. 

Support groups are helpful. You have to hear your stresses leave your body through words. To be accepted and validated like that was therapeutic. 

What wonders. God hand-selects the people we meet. I am grateful for His help and wisdom. And I am also SO grateful for healthy, caring people who stick up for us. 

"I Live in Two Worlds"

Could I ever wear a message like this? 

Answer me this: 

Is it better to deny that a disease rules your life and optimistically hope for a future that may never happen, OR is it better to let a disease become part of your identity? I don't know how else to put this question. But I'm in denial. I don't want to put a label on myself and then become that label even more. But I don't know how to excuse not being normal. 

"I live in two worlds- the world of the healthy, where I put my best face out and do anything my heart is set to, and I also live in the land of the sick.... The unfortunate thing is you really can't live for very long in two worlds. It is a dizzying, exhausting dance to be two different people..." 
http://www.butyoudontlooksick.com/articles/written-by-christine/chronic_illness_feelings/#.dpuf

People are public about all kinds of conditions (examples: beast cancer, heart disease, diabetes). I just don't want Lyme or my other diseases to be my identity. Yet sometimes it would be nice to cut myself a break and go with the label. Know what I mean?

I. Am. So. Tired. All. The. Time.

This is me in the hyperbaric oxygen chamber--soooooo tired, as usual, but not able to sleep, as usual. This no-sleep thing I've had for five years is exhausting. It's worse than immediately after giving birth when you're just SO spent, and you're up all night for two weeks straight; it's worse than any sleep deprivation or exhaustion I've ever had. It has worsened over five years. It's hard to move, to lift my arms, to get around. My bones and muscles ask for mercy when I'm up, but sometimes I overexert out of sheer rebellion to my tiredness, but I pay for it. 

I am always so tired--fatigued, mentally exhausted, tired in my tissues and bones. 

All. The. Time. 

Red Band Society: "I Can Take the Disease, but I Can't Take the Pressure."

I do not want to scare off all my optimistic well-wishers. But lately an emotion has been steeping inside me that I couldn't put into words. 

Then I watched the last episode of a show called the Red Band Society which takes place in a pediatric unit of a hospital. There's medical stuff, a little morbid humor, and kids (though I do not recommend the show to kids or to any of my straight-as-an-arrow LDS friends; there are parts I have to skip). The kids in the show hang out, go to in-hospital school together, and support each other as each faces their own diagnoses. I have enjoyed following the characters thus far; maybe it's a nurse thing. 

Finally though, that emotion I was feeling was put into words. I jotted down the dialogue. 

In this first part, Leo, a teen cancer patient, leg amputee, and leader of the Red Band Society (group of sick kids who have each other's backs) is fixing a wheel on his wheelchair when a teen cystic fibrosis patient named Mae, who wears oxygen and carries an oxygen tank on her back, approaches him. Mae has been an online support group friend with another cystic fibrosis patient named Dash.

Mae: "Need a hand? I may not look like it, but I know my way around a toolbox. I'm Mae, by the way."

Leo: "What are you doing here? Dash is waiting for you."

Mae: "Yeah! But I wanted to see if you were ok."

Leo: "I'm fine."

Mae: "You're more than fine. You're 'Superman!'"

Leo: "I'm what?"

Mae: "Dash has tag names for all of his friends online. Yours is Superman, 'cause he said 'Nothing can keep you down.' You beat cancer, you brought the Red Banders together...you're like a real-deal hero!"

Leo: "Yeah, well I don't feel much like a hero right now."

Mae: "'Cause you lost the wheelchair race?"

Leo: "No, because my cancer is back."

Mae: (Pause) "THAT'S FANTASTIC!!!"

Leo: "WHAT are you inhaling? How, in ANY way, is that good?"

Mae: "Uh, it means you don't have to be Superman anymore, which, I gotta say, sounds...EXHAUSTING. ...Getting [cancer] a second time proves you're not invincible."

Leo: "So, I should be happy I have cancer?"

Mae: "No, you should be HAPPY you can finally take off the cape! I don't know how familiar you are with...Superman..., but it's like in Superman II, when he loses his powers--"

Leo: "--and he gets the [c--p] get kicked out of him."

Mae: "YES! Wasn't that awesome?! I mean, sure, he got beat up and it was painful, but he got to be with Lois Lane!... He got to have a real conversation for once in his life! He didn't have to feel like the future of Earth depended on him! I mean, it's gotta be such a relief, don't you think?" 

(Red Band Society, "Waiting for Superman," season 1, episode 13, 21:05)

---

This follow-up to the previous conversation really holds the meat for me. I thought I was overcoming Lyme, but the last two weeks have kicked my trash, and I wonder if my progress against Lyme has regressed.

In this scene, as a last-stitch effort to fight Leo's returned cancer, Dr McAndrew applied for Leo to be part of an investigative trial to fight it.

Leo's mom: "Are you serious? He got into the trial?!"

Dr McAndrew: "He starts tomorrow."

Leo's mom: "Oh! Oh, that's amazing! (kisses Leo's cheek) Can you believe it, Leo?!"

Dr McAndrew: "You make good things happen, buddy!" 

Leo: "No. Don't say that...

Leo's mom: "Honey..."

Leo: "Mom,...look. I got cancer twice; I could die. I'm not lucky. I'm not Superman, so let's stop acting like I am. 'Cause I can take the disease, but I can't take the pressure. Ok?" 

(Pause)

Dr McAndrew: "Ok." 

Leo's mom: "Ok." 

Leo: "Good. So, uh...tell me about this trial." 

(Red Band Society, "Waiting for Superman," season 1, episode 13, 36:20)

It's natural to think that for a young person like me, illness + treatment + time = good health. I'm a tough, pioneer woman. I've been an athlete. I've been a brainiac and a convocation speaker. I'm a professional. I used to really have my stuff together. 

But dang it, I am sick.

I have clear skin from the antibiotics and Paleo diet that make people think I'm healthy. I am small-boned and thin. Eight years of orthodontia show in my smile. I dress pretty well and often do my hair and put on mascara when I leave the house. I generally have decent posture from my ballet days. I work on incorporating Christ's light and love into my fibers every day. In other words, I think I naturally carry an air of wellness. And for anyone who knew me before all this, I still look the part of the healthy, smart dancer nurse girl that I once was. 

But you don't see that I change into old dance pants when I get home and lie down for hours at a time. Sometimes I don't leave my bed all day. If I am out and about, it is because I forced my body to pump out extra adrenaline, and when I get home, I WILL collapse (without sleep to console me). You don't see that I spend half a day twice a week at the doctor's office getting treatments to keep me afloat. You don't see me awake until three in the morning with insomnia and my absurd adrenaline rushes. You don't see that it's almost impossible to nap, and that I can't truly relax anywhere but at my own house. You don't know my heightened social anxiety, and the hollow shell that Lyme has made me become. One Lyme survivor said it felt like she was dead inside her body--that the essence of who she was no longer lived. 

When I feel like screaming to the world that I am well again, I will. But I'm kind of tired of the hope people have in me. What I mean to say is, I feel the like I let people down when they ask how I'm doing, and I'm honestly doing worse that day. For me, I've done worse for two weeks. 

But people have fasted and prayed for me, served me, given gifts to my family, shown faith in me, written cards of encouragement...I could go on and on. There are so many well wishes and gestures of kindness toward us, and we are so grateful. But when people hope that I am overcoming physical illness, and I'm actually not, at least not measurably, it feels like there's nothing to show for all their care. Their smiling, hopeful, "how are you" faces drop when I report that things are not worse and not better. I get a lot of optimistic responses; that's probably just what I would do too. 

But I feel like saying what Leo said: "I could die. I'm not lucky. I'm not Superman, so let's stop acting like I am. 'Cause I can take the disease, but I can't take the pressure [to overcome it]. Ok?"

The expectations I had for my life at this age have not come to pass with my health as it is now. I have adapted to my life as it is though, and I feel optimism. But I'm not Superman. I don't know if I will overcome this syndrome of diseases. All I can do is live in the present day to day and praise God for absolutely everything.

Some people are meant to be well. Some are meant to be healed. Some are meant to be chronically sick, but alive, and to teach others service while they learn to be served. Some are meant to die from sickness. There are many other possibilities of how life plays out for each of us. 

I don't know what my path will be. But some days, I just can't believe in wellness, because my first instinct is to equate wellness with happiness. I still have to consciously think otherwise and be happy without wellness. 

We can't wait to be rich, or educated, or accomplished, or to have a large family, or a house, or to travel, or whatever before we are happy. 

Being cured and being healed are different. I am healing all the time, in my spirit especially. And who knows, maybe one day I will be cured. But I'm not obsessing over that. 

Here are some general thoughts (definitely reminders to myself):

*Do not look at me and think I am incomplete today because I am not well. There is potential to be well again, but my value is as much now as it would be in complete wellness. My hurrying to get better ultimately hurts me. I want to report progress to my adoring family and friends, but I need to let go of my people-pleasing and instead practice patience with who I am right now.

*Do not think wellness is a destination I need to reach so I can be "back to normal" and "move on" with my life. I am learning to be ok with not knowing how things will be. I am achieving my potential insofar as I am able, now, even though some would argue the conditions are not right for me. Things are as they should be. God's plan is perfect. 

*Do not be disappointed that I am not better yet. Do not think your prayers and fasting on my behalf have not reached Heaven. They have, and I know it because I have been able to endure and learn. God cares more about my growth than my comfort. I am certain We are following a path We arranged together prior to my birth for my best growth and highest good on this earth. 

*Do not expect me to return "back to normal." I cannot guarantee that, and to my knowledge, I have never been promised that I would fully bounce back (though I now heaven likes to pleasantly surprise us sometimes). Lyme, scleroderma, and the MTHFR mutations may leave me altered for the rest of my life. I am sometimes kindly pressured by encouraging words toward a place of wellness that I may never reach. I am enough, today, sick and everything. "I can take the disease[s], but I can't take the pressure" of reporting and displaying wellness. Yes, I'm a strong, pioneer woman. But maybe this load is lifelong; I have to accept that possibility and press on, like a strong, pioneer woman. 

I am not who I thought I would be at this point in my life, but I think I am wiser. I do not fit the world's mold either; thank goodness for that. Ultimately, I'd rather be custom-shaped in the Potter's hands. I know that in His hands, I am complete and whole.

Perfectionism is EW

By nature, I get zealous easily with my personal goals.

I always wanted to become a runner, so in college I signed up for a jogging class to MAKE myself run. After three months, I was elated to reach the place where I could easily run several miles. It was a joy! Unfortunately, my coach said an injury in my achilles was very serious, and he committed me not to run the remaining fifty miles required for the A grade. (I made up the miles when I was better and got the A; that was our deal.)

Likewise, two years ago I wanted to become a reader, so I set a New Years resolution to read twelve books. It didn't happen, but I read several books last year instead and felt great about it.

I just finished a book and started a new one. My old, eager, goal-setting self spoke up first: "I'll make a stack of books to read so I know what to read next! Ooo, or a list! I love lists!"

I looked at the shelf on my left and saw the intimidating row of books marching toward me. I felt buried already. Reading instantly became a chore instead of a hobby.

Then my newly-born, live-in-the-present, live-in-amazement self spoke up: "If I finish the book I just started, I'll see if I'm in the mood to read something else afterwards. If I am, I will pick something that feels right. But right now, I'm enjoying THIS book." Aha! Reading is fun again!

Two weeks ago, the Holy Ghost whispered to my heart: "Set a little goal. You will be pleased."

I decided to try cleaning a small area in my house every day, having hardly lifted a finger to clean in five months. I knew I would back out if there was a "To Do" list because I would set my sights too high.

It's a cycle:
PERFECTIONISM leads to
PROCRASTINATION leads to
PARALYSIS leads back to
PERFECTIONISM...

With no "To Do" list in sight, every day I happened upon an area that felt easy to tidy. A couple minutes later, it was clean. I sighed in satisfaction and said a prayer of wonder and thanks.

At night, I added my accomplishments to my "Ta Da" list. Because this is a Lyme blog and I'm logging progress, I'll copy and paste my "Ta Da" list here:

"Monday: mud room bench; Tuesday: master bathroom vanity, one load of laundry; Wednesday: garbage disposal, shelf in my closet, my purse; Thursday: my brain (4 dr appts); Friday: three hours of cleaning! Washed bedding, made beds, did laundry, swept, tidied a little. A GREAT house day! I didn't get up til 2...again. But afternoon was great. Saturday: did lots of laundry and folded two baskets full, had tea party with kiddos, made bed." Also noteworthy is that I drove the car because of improved balance and reaction time. I also cooked once. I felt like I made some progress through the week. It felt great!
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Strides toward overcoming my personal perfectionism is giving me more peace in my life.

Perfectionism denotes that I rely on myself and think "it is all up to me" instead of leaning on and trusting in Jesus Christ, His love, and the power of the Atonement. Perfectionism is based in fear. I'd rather live in love, trust, and amazement. I'd like to enjoy the Love of Jesus more abundantly in my life and be a better instrument for good in my home and in this world, but I can't if I live in fear. Only love.

Our worth is not based on performance and perfection. Our worth never changes; we are precious because we are Heavenly Father's children. There is nothing we can do to make Him love us any less, and there is nothing we can do to make Him love us any MORE.

It is a relief to know that it is not possible to be completely PERFECT in this life. Like breaking the 4.0 grade point average or the perfect attendance record, the pressure is off!

I keep a list of "I am" statements on my nightstand and review it nightly so I can become that person gradually, line upon line. When degrees of the renewed me manifest, I am giddy, grateful, in awe, and amazed.

Instead of forcing difficult goals on myself, I notice that gradual, positive changes are truly grand and more likely to stick.

I choose to trust Jesus. Only through Him can I become a better person. It is not all up to me!

Jesus enables and empowers us; in Him we are made perfect. He loves each of us as a stumbling child--with compassion, empathy, and encouragement. Perfection, as completeness, is accomplished as we labor WITH Jesus instead of on our own.