Sunday, September 20, 2009

36 and 30

Not my age, nor any other significant numbers that might have crossed your mind when you glanced here.

Those two numbers represent God's faithfulness to me. His faithfulness in revealing Himself when I seek Him, in drawing near to me when I draw near to Him, in never forsaking me, even though I'm an idiot and screw up more than I get things right.

36 days ago, God began a restoration and a renovation in my life, beginning the morning of August 16th, when I opened up my bible in the kitchen since I was in too much pain to drive to church. Since then, I have been spending at least an hour every day in scripture and prayer. Sometimes much longer. Some of the initial euphoria is gone, but it still has been my daily comfort.

30 days ago, I began a journey that will hopefully take through the entire bible in a year, with the goal of seeking what God says about who He is as I go along. With the plan that I chose, I have finished Genesis and am now at Exodus 24 and Matthew 21. I also have over 3 pages (single spaced) identifying things God is showing about Himself. My hope is at the end of the year, I should have a massive file on my computer that is a passing glimpse of Christ.

I am still struggling intensely with loneliness and depression - thanks in part to the migraines that screw with my mood all the time. I'm slowly learning to cry out to God and to "cast all your cares upon Him, for He cares for you" (1 Peter 5:7).

"You will seek me and find me when you seek me with all your heart." (Jeremiah 29:13)

"Draw near to God, and He will draw near to you." (James 4:8)

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you." (Deut 31:6)

"If you love me, you will obey what I command. And I will ask the Father, and he will give you another Counselor to be with you forever--the Spirit of truth. The world cannot accept him, because it neither sees him nor knows him. But you know him, for he lives with you and will be in you. I will not leave you as orphans; I will come to you." (John 14:15-18)

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows." (2 Cor 1:3-5)

"May your unfailing love be my comfort, according to your promise to your servant. Let your compassion come to me that I may live, for your law is my delight." (Psalms 119:76-77)

Tuesday, September 15, 2009

Invisible Chronic Illness: Turning the Tables

For most of my life, I've been the one with the invisible illnesses in my immediate family. My dad also deals with invisible symptoms, but when it comes to pain, I've held the monopoly in our 4-person family. That is, until four months ago.

While I was abroad doing dissertation research in May, I got an email from my dad saying that something had happened to my mother and she was in severe pain for an unknown reason. After a number of weeks and multiple doctor's and ER visits, she was finally diagnosed with sciatica - a very painful inflammation of the sciatic nerve, leading to burning pain in the lower back, buttocks, and legs. By the time they determined what it was, she was almost 100% immobile. Dad had to pack an ice chest with everything she needed while he was at work every day, and she couldn't walk across the room to go to the bathroom without help.

The doctors kept giving her pain meds and telling her that it would improve with time. Four months later, she still has virtually no mobility, won't walk without a walker or canes, and is in a severe depression. She's on meds, in physical therapy, but things aren't going well. This morning I was awakened after only 3.5 hours of sleep by a phone call from my dad, who was at his rope's end.

I must admit - being on the other side of the table is strange. My mother has never been sick in her life, beyond the occasional allergy flare-up or headache. It's strange being the helpless one, the one who wishes more than anything that they could take the pain on themselves to spare their loved one. It's given me the utmost respect for caregivers - those who, for years or decades, do whatever they can for their hurting loved one.

From our very limited experience, here's what I've learned about being a caregiver:

1. It's hard. Probably the hardest thing anyone could ever do. You have to be strong when you want to collapse. You have to be compassionate even when you are frustrated.

2. It's a true labor of love. If you don't truly, honestly, deeply, unconditionally love the person who is in pain, with a God-given love, I don't know how you will ever survive. But that love gives you strength when you both are weak, hope when you both want to despair, and joy in the worst of circumstances.

3. Caregivers need just as much care as their ill family members. We often forget that these people give 200% of themselves in being caregivers. They need support, too. Depending on how bad things are, they might need even more support than the person who is ill.

Celebrate the caregivers you know. Be there for them - offer to run errands, or give them time to rest by being there for their cared-for one. Be understanding when they're having bad days, or when they give in to despair once in a while. Let them know that they are loved for who they are. Pray for them constantly.

Care for the caregivers as they care for others.

Monday, September 14, 2009

Joy in invisible illness

Over a period of ten years, from the time I was 14 until I was 24, I was repeatedly told that I had chronic illnesses or chronic pain that could never be "fixed" and would most likely be with me until the day I die. First it was learning of the structural problems with my ankles (7 different structural issues), then my knees (5 structural problems there), then the "loose joints" that leave me with chronic tendonitis in all of my major joints, then the 24/7 allergies and chronic sinusitus that, thanks to genetics, doesn't respond to treatment, and finally chronic migraine disorder.

I'd be lying if I said that all of these piled on each other didn't leave me feeling hopeless and depressed. Many nights I would cry myself to sleep, not sure I could handle all of the stress that came with these things on top of all the regular stress of life, especially with grad school and teaching thrown in the mix.

Especially after being diagnosed with chronic migraines - where, without preventive and abortive meds, I was in constant pain for weeks on end - I had to learn how to find joy through the pain. So here's my list of things that bring me joy - because chronic illness doesn't mean we have to lose our joy. It might dampen it once in a while, but we don't have to lose joy.

1. My faith - bar none, my joy comes from God. He gives us joy in abundance, because He loves us with an everlasting love. Without Christ, I'd be so lost, I don't think I'd ever recover.
The LORD has done great things for us, and we are filled with joy.~Psalm 126:3
Unless the LORD had given me help, I would soon have dwelt in the silence of death. When I said, "My foot is slipping," your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul. ~Psalm 94:17-19

2. Music - on days that I feel great, singing and playing music on the piano or guitar are great sources of joy. But even when I'm at my worst, and I can't function at all, I listen to music. I take comfort in the beauty of the notes, in the passion of the lyrics, and let it move my soul. Some of the artists whose work is comforting to me, either because of the sound or the lyrics, are:
*Loreena McKennitt - her music is soulful and often quiet, and I love the international flavor
*Alison Krauss - the part of me that is amazed by bluegrass music loves her fiddle playing, but her lyrics are also often contemplative, which is often what I want when I'm feeling badly.
*Randy Travis - I am head-over-heels in love with good baritone and bass voices, and so I could care less what he sings about, just as long as he goes low. :-)
*Jaci Velazquez and Legado - the latter a Christian latina duet I found in the mid-90s, this gives me my Spanish kick, but both are primarily about worshiping God.
*Michael W. Smith - his worship music is some of my favorite, for it's always annointed.
*Gin Blossoms - my friend Kevin gave me their cd from the mid-80s, and I love it. A little rock, but not so hard that it hurts my head.
*Sarah Bareilles - silly pop music, but I love the piano arrangements she has, with just the right amount of attitude for when I'm a little annoyed at my body.
*And most of my Broadway soundtracks, Lord of the Rings soundtracks, and any other worship music I own.

3. My friends - I don't have many close friends, but those who have stuck by me, through the depression and the pain, are pure blessings. Even if I can't spend as much time with them as I'd like, I treasure any time I do get to be with them.

4. Cuddling with my cat - sounds silly, but I have such a skittish cat, and he's so stand-offish with everyone else in the world that just the fact that I can cuddle with him and that he sleeps against my leg every night brings me untold joy. It's nice knowing that this little creature trusts me completely. And his purrs can make even the worst day better.

5. Cycling - I never thought, with all of my health problems, that I'd be able to engage in any sort of strenuous exercise. But almost a year and a half ago, I bought a bike and was determined to become a bike commuter so I could escape public transportation every day. It took a lot of effort, and a lot of practice to figure out how much my head could handle, but after a year, I have biked well over 1,000 miles. When I'm biking, especially for recreational rides on the weekends, I feel free. Other than when I'm singing or playing piano, it's probably the only time that I don't feel like I'm living with chronic illness. I feel almost normal for the time I'm on the bike. It's been one of the biggest blessings in my life.

6. Writing - Whether on my blog or in a private journal, I've found that one of the best ways to move through the pain is to write. Sometimes it's just saying how I feel. Sometimes it's writing poetry or songs. Whichever it is, it helps me to name the bad stuff and the good stuff so I can celebrate when the good things happen.

7. Cooking - I don't always feel well enough to cook, and I confess that I rely on fast food probably too much - hazards of living alone and dealing with tons of stress and pain. But on the days that I do feel good, I absolutely love to cook. I rarely use recipes, and prefer to just experiment. My ultimate joy comes from when I feel good enough to cook for someone else. It doesn't happen often, but when it does, I am so incredibly happy.

8. Sunsets - Living in the desert, we have amazing sunsets. Even on my worst days, the desert twilight is enough to make me get out of bed, with ice pack on my head, and stare out the window. To me, sunsets are like a small glimpse of the glory of God.

All of these are just part of the little things that I can sometimes overlook when things are bad. But they all are sources of great joy. Over the past 14 years, I think one of the greatest lessons I've learned is to let yourself revel in the little things. Even if they seem tiny to you (or to someone else), every joy is a victory.

To end this very long post, a poem I wrote in the midst of pain:
There is beauty in the world
~Can you see past the ugliness?
There is joy in the world
~Can you feel past the pain?
There is love to be given
~Can you receive it through your hurts?

I want to see beauty, feel joy, experience love
And yet something holds me back
The pain washes over me like a flood
And my heart shatters once again

How do you move beyond the pain?
How do you see past the ugliness?
How do you feel when it hurts so much?

There is beauty, joy, and love in the world.
Can you see it?

Sunday, September 13, 2009

30 Things About My Invisible Illness

Teri Robert of MyMigraineConnection had recently posted this on her blog, From Teri's Keyboard, and asked all of us who follow her to participate.

Here's what Teri said on her blog:
Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.

Invisible illnesses are easy for "healthy" people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know.

So here we go:

1. The illness I live with is: Migraine disorder (including Chronic Migraine and Migraine Without Aura), migraine-related vertigo, chronic allergies and sinusitus, and multi-joint chronic tendonitis. Thanks to the migraine disorder, I struggle with depression - yay, mood fluctuations. This meme will focus on the migraine disorder.

2. I was diagnosed with it in the year: 2005

3. But I had symptoms since: At least since college, maybe earlier; I always thought I just had really bad sinus headaches. It was only when I collapsed at work at my MA program that they diagnosed me with migraines.

4. The biggest adjustment I’ve had to make is: having to say no to things and people I really want to say yes to because I'm in too much pain, or the environment has too many triggers.

5. Most people assume: that I "just have headaches," and I must not be doing enough for them because I'm in pain so often.

6. The hardest part about mornings is: eating breakfast. I'm often nauseous first thing in the morning, no matter how I feel the rest of the day.

7. My favorite medical TV show is: ? I've watched House occasionally.

8. A gadget I couldn’t live without is: probably my computer. I've lived for a months without a phone, but I'd go nuts without a computer.

9. The hardest part about nights is: the dizziness, especially while laying down, and the inability to get into a comfortable position for my back/neck/head, which means I'm usually in a lot of pain when I am trying to sleep.

10. Each day I take: at least two medicines, sometimes up to five.

11. Regarding alternative treatments I: am open to them, though some are out-of-reach in price. I relied on massage therapy for three months to survive my doctoral exams. And I pray a lot - not quite meditation, but it does help to calm down and not tense up so much.

12. If I had to choose between an invisible illness or visible I would choose: Probably visible, so I wouldn't feel like people thought I was exaggerating or faking half the time.

13. Regarding working and career: It's hard a lot of times, but working is one of the ways (along with playing piano or guitar and singing) that I get to take my mind off of health issues for once. I've gone to class, taught class, graded exams and papers all with full migraine attacks. Teaching is my passion, and I'd do most anything to keep doing it, no matter how I feel.

14. People would be surprised to know: that I have pain of some sort every single day, and don't remember what it's like to wake up without something not working correctly.

15. The hardest thing to accept about my new reality has been: the realization that there is no cure, apart from God's miraculous hand.

16. Something I never thought I could do with my illness that I did was: get through my 2-week marathon of PhD written exams.

17. The commercials about my illness: are ridiculous, and partly the reason why everyone assumes a migraine is just a headache that you can't handle, rather than a complete genetic neurological disorder with multiple stages and more symptoms and triggers than you can imagine, and that can actually get ten times worse if you just throw painkillers at it.

18. Something I really miss doing since I was diagnosed is: the ability to be spontaneous.

19. It was really hard to have to give up: going to do things with friends late at night. I get worse in the evenings.

20. A new hobby I have taken up since my diagnosis is: Hm. I guess guitar is new. And blogging was new at diagnosis, too.

21. If I could have one day of feeling normal again I would: go cycling and hiking in my desert without worrying about the heat, the sun, dehydration, fatigue, or pain, and enjoy being with my friends.

22. My illness has taught me: to be sensitive to other people's pain, especially when they "look fine."

23. Want to know a secret? One thing people say that gets under my skin is: "No word from the doctors yet? Why haven't they fixed it?" I know they mean well, but, in reality, for people with chronic migraine, I'm actually doing extremely well. I don't have to go get rescue meds at the ER every month - in fact, I've only been to the ER for migraine once, and that was when they diagnosed me. I don't have to take really high dosages of our meds like some that I know. I'm not at home on disability- I can still work. I haven't been discriminated against at work, or laid off because of my health. For us, I'm in the top percentile.

24. But I love it when people: give a simple hug. Some days that is more powerful than any words.

25. My favorite motto, scripture, quote that gets me through tough times is: "No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." ~Romans 8:37-39

26. When someone is diagnosed I’d like to tell them: There is hope. You don't have to die inside; you can still enjoy life. Educate yourself as much as possible, and do what you can. You're going to have really awful days, but you'll have bright spots, too. Enjoy every moment you can.

27. Something that has surprised me about living with an illness is: the isolation.

28. The nicest thing someone did for me when I wasn’t feeling well was: sitting with me until I fell asleep when things were awful.

29. I’m involved with Invisible Illness Week because: I have the ability to speak, and many who live with invisible illnesses don't.

30. The fact that you read this list makes me feel: like people will soon truly educate themselves about these kinds of illnesses, and that maybe my friends who are much worse off than I am will receive more compassion and understanding as a result.

Friday, September 4, 2009

I feel like I'm on a very tall roller coaster lately. I have experienced intense highs, and just as intense lows. Some days, they come within 30 minutes of each other. I'm very slowly learning how to deal with the lows. I have been taking refuge in scripture and singing when things get bad.

I'm seeing God's faithfulness daily. He's teaching me more about myself each day, and about Himself as well. Some of it has been a bit hard to take, but I know it's good for me. I've also had the joy of seeing Him use me for someone else's joy this week. I had forgotten how that felt.

Tonight, I sing with the psalmist:

I love the Lord, for he heard my voice; he heard my cry for mercy.
Because he turned his ear to me, I will call on him as long as I live.
The cords of death entangled me, the anguish of the grave came upon me; I was overcome by trouble and sorrow.
Then I called on the name of the Lord: "O Lord, save me!"
The LORD is gracious and righteous; our God is full of compassion.
The LORD protects the simplehearted; when I was in great need, he saved me.
Be at rest once more, O my soul, for the LORD has been good to you.
For you, O Lord, have delivered my soul from death, my eyes from tears, my feet from stumbling,
that I may walk before the LORD in the land of the living.
I believed; therefore I said, "I am greatly afflicted."
And in my dismay I said, "All men are liars."
How can I repay the LORD for all his goodness to me?
I will lift up the cup of salvation and call on the name of the Lord.
I will fulfill my vows to the LORD in the presence of all his people.
Precious in the sight of the LORD is the death of his saints.
O Lord, truly I am your servant; I am your servant, the son of your maidservant; you have freed me from my chains.
I will sacrifice a thank offering to you and call on the name of the Lord.
I will fulfill my vows to the LORD in the presence of all his people,
in the courts of the house of the Lord-- in your midst, O Jerusalem. Praise the Lord.