10,000 Reasons... #4, 5, & 6

These blessings have been collected over the past several days. Praise God with me as you read! =)

#4. If you read my previous post, you can kind of skip this one, but I wanted to mention it again simply because it is such a little thing that wouldn't matter to most of the world, but made all the difference for me. Normally I am a very sunlight-loving person, but when I have a headache, the sunlight is like murder to my eyes and pounding head. The day of our drive back from the Detroit area was very sunny, and I already had a headache that had carried over from the day before. I knew I wasn't going to be a happy camper on the drive home. I had ibuprofen, but that wasn't helping much, despite the fact that it normally does. If only the world weren't so bright and sunny.... Enter my blessing for the day: a pair of welding glasses that actually fit over my glasses and made the world as dark as I needed it to be. Thanks, Abba! :)

#5. Remember my post from earlier this month - words, words, and The Word? One of the words on the first list, Kutapressin, was directly paired to another word on the second list: fear. Why? Because Kutapressin was the antiviral I thought Dr. Conley was going to recommend for me to take, and it is administered through daily self-injection. Those fears were pointless, because Dr. Conley didn't end up prescribing Kutapressin after all; he gave me a prescription for an oral tablet antiviral called Valtrex instead!

#6. Every year our little neighbor boy sells these "Save Around Erie" books with all kinds of coupons. Usually we use them for restaurants: Chick-fil-A, McDonalds, Moes, etc. The book costs $20 and saves way more than that, so its worth it. But we didn't know just how worth it it was to buy that coupon book this year! My dad was flipping through the book the other day and noticed a coupon to be used for getting 10-75% off prescriptions. What I didn't mention about Valtrex is that it is expensive... very expensive. Kutapressin would have cost $100/vial, and most people use 2 vials a month, so $200 per month. Valtrex generic costs almost that ($160) for seven days. Youch. My mom and I went to the pharmacy to find out what it would be to fill my script for 15 days. The discount with our insurance card brought the price to $357. Then my mom opened the coupon book. "I don't know if you accept this, but, what price would it be with this coupon?" It was $145 - less than what we had paid for less than half that dosage in June. Wow. God is good. Thanks, little neighbor boy. That $20 coupon book came in handy for saving $212 on that prescription. And since I have to refill it several times, the savings will be at least four times that since there are four of the coupons. Who knew? :)

Doctor's Visit Report (8/27)

Dear Praying Friends,

Thank you so much for praying for our trip! I guess it went pretty well. I was very tired by the time we arrived in Flint (I know I used to get up at 3 every day, but now I like my sleep!) and had the beginnings of another encounter with Horace.

My two-and-a-half hour appointment began with an extensive review of my previous medical history. Thankfully most of that was already written down, so Dr. Conley read aloud to himself, asking a few questions as he went, and I just sat back and relaxed. For once, a doctor took me seriously when I told them I thought I had chronic fatigue and didn't say, "Oh, well let's try this first," or "Have you thought about this other illness or that organ having something wrong?" I really appreciated that I didn't have to prove that I had chronic fatigue; Dr. Conley could see that I do.

At the end of reading my case, Dr. Conley said, "Pretty straightforward!" and then muttered, "knock on wood" as he rapped twice on his desk. He began to assure me that I would get better - that he knew how to treat what was going on, and that there were many things that could be done to help me. I was glad. He gave us hope. Since I have been on before and responded so well to Valtrex, an antiviral drug which helps suppress the EBV, he ordered a prescription for that. A second positive response to Valtrex will not only help my body get back on its feet, but will also help 'buy time' while we wait on the results of some other tests to see what they reveal about the functionality of my body, even down to a cellular level. He put me on a few other prescriptions/supplements (potassium, calcium, lysine) and ordered a bunch of bloodwork and a few other lab kits.

Then he began flipping past the actual story of my illness, reviewed the family medical history, and then started looking more deeply at some of my symptoms. I made sure that I had recorded incidents of 'paralysis' such as this one and told him about others. At this point, he became very serious. So the new name for my episodes of what-seems-like-paralysis-but-is-not is 'spasms.' For these, Dr. Conley thinks I should see a neurologist. Since he's the third doc who has said this, I think this time we might actually make an appointment and go through with it. Please be in prayer for me as I try to find one today; one that accepts our insurance would be grand.

By the time the appointment was over and we were driving south the the Detroit area to stay with friends I had to cover my eyes with a sweater because my sensitivities to light had sky rocketed. By 9 o'clock I was sound asleep, and I slept for 12 hours and yet still woke up with ugly Horace there. God provided in a funny way for something to help Horace behave himself yesterday during our drive back. Our host heard about my sensitivities to light and found an old pair of welding glasses he wasn't using anymore. Surprisingly, they fit over my glasses. They turn the world so green you would think you were in the Emerald City, and they weren't the prettiest things in the world, but, hey! they kept my headache from getting any worse and I wasn't stuck underneath a sweater the whole way home!

Good news: my follow-up appointment in one month will be over the phone, so no long drive to Flint next month!

If you have any further questions about the appointment or the details of what the doc said, feel free to comment or shoot me an e-mail.

Blessings,
~Camille

Tomorrow!

You know how there are some days of your life where there seems to be a theme? You might see lots of a certain kind of car, or hear the same song in a few different stores, or hear the same word or phrase several times on the same day. Well, if today had a theme, it would most certainly be, "I am praying for you." I must have heard those words about 30 times today. Thank you, Body of Christ. You really blessed me today :)

Tomorrow is the day I see Dr. Conley in Michigan at 2:30 (EST)! I know this meeting has already been bathed in prayer, and I am looking forward to giving you all a report. 

Strengthened for today, hopeful for tomorrow --

~Camille

O Lord... You Know...

"God will not hold us responsible to understand the mysteries of election, predestination and the divine sovereignty. The best and safest way to deal with these truths is to raise our eyes to God and in deepest reverence say, 'O Lord, Thou knowest.' Those things belong to the deep and mysterious profound of God’s omniscience. Prying into them may make theologians, but it will never make saints." (A. W. Tozer, The Pursuit of God, p. 64)

Can you hear the groans - the groans of sinners and saints everywhere?

This life hurts. It is painful. I want out. Why? Where is God? Why did He do that? Why does He allow... even ordain... pain?

My heart can hear those groans. It can also sense divine comfort in the midst of groans, but the groans cannot be ignored.

It takes time to surrender to sovereignty. And right now, I can only lift my hands heavenward and say, "O Lord... You know...." Because He does know. He knows more than I do. And He's up to something heavenly.

 

How to Comment

Dear readers,

A few of you have said, "I would have left a comment, but I had to create an account and I didn't know how to do that so my comment disappeared!" Anyone should be able to comment on my blog, regardless of having or not having an account. Here are some step-by-step instructions to help. To help, I've taken a few screenshots. You can click on any of the images in this post and they will appear larger.

Click on the post for which you wish to leave a comment. First, write your comment - as short or long as you please. You will see a drop-down menu of options for how to post your comment. If you have a Google account (if you blog, have a Google+ account, or use GMail you already have a Google account) or use LiveJournal, WordPress, TypePad, or AOL Instant Messenger (AIM), you can use these accounts to log in and leave a comment.

Next, type in your name. If you have a website, you can also put your website in the blank labeled URL, but you do not have to put anything in that blank in order to be able to leave a comment. 

After hitting continue in that window where you were asked to enter your name, and then publish (below the comment box), your comment will not immediately appear. It will be sent to my e-mail, and I will have the approve your comment from moderation. This way, I get to control what people say about me. It's like I'm my own secret police. Just kidding! This is so that I can control spam comments from people who don't really know me and don't care about my blog and just want to advertise their site, drugs, or point of view. When I receive notification of your comment, I will publish it, and it will appear on the blog like so!

Hope this helps! :)

Blessings,

~Camille

A Magical Evening

The beach is amazing. I went last night 'to read' while my family was biking. The sky was so bright blue and beautiful I was staring at that. I got distracted watching the sunlight hitting the trees behind me. Then of course I had to people watch for a while, and by that time the sun was setting. I don't know if I've seen a more beautiful sunset. As it was beginning, a man standing on a surfboard paddled out into the lake past the rock piles. While the sun was setting, he began blowing bubbles with a huge bubble wand. I've never seen anything like it in my life! Some of them were probably twenty feet long! have you ever seen a 20 foot long bubble pop? it starts at on end and just slowly evaporates away. Incredible, especially with the sunlight glistening off them. Truly a magical sight that I will remember for years to come.

What a magical reminder... that... the world is beautiful, and that I am such a very small part of it, so why focus on myself? Why not instead focus on the God who created it all? I felt like standing up and applauding the entire scene - the seagulls, frightened away by the bubbles; the sun, barely glistening over the horizon; the bubbles, soaring high up into the sky before popping; the people, watching in wonder. Why? Because God created and rules and governs it all.

If I would have had my Bible with me, I think I would have read Psalm 148. If you have the opportunity, why not take an evening this week to head outdoors to read this psalm and enjoy the scene God has created? He is so worthy of praise!

Photo Credit: Ewa Kurek

If that's a gown, I'm Kate Middleton!

One activity that was never on my bucket list was a 3 a.m. trip to the emergency room. But, when you wake up in pain at midnight and are still in pain two-and-a-half hours later and it seems to be getting worse, what are you supposed to do? Google what organs are on the left side of the body, that's what! Finding that the pain was generating from an area that could well be my spleen or something else that I probably didn't want to burst, I woke up my daddy and off we went.

As much as the whole ordeal of check-in, triage, nurse, intern, supervisor, doctor, phlebotomist, and discharge wasn't fun and did keep me up all night, I couldn't help but laugh a few times. (Maybe that proves how tired and out of it I was....) Solomon was right when he said, "A merry heart does good, like medicine, but a broken spirit dries the bones" (Proverbs 17:22).

A continuing source of mirth came from the standard medical garb we know as 'hospital gowns.' Who ever came up with calling that get-up of crazy-stiff, uncomfortable, itchy material a gown??? Brides wear gowns, and girls wear gowns to prom. But hospital attire is not a gown. And if that's a gown, then I'm Kate Middleton!

Another funny thing (to me) was just how insanely dated the whole place was. At one point, looking around, I said, "Looks like Florida." For some reason, decor from the 1950s-70s makes me think of Florida. I think the association remains from my grandma's trailer in Florida, which had similar colors, patterns, and textures.

I had a few laughs at the personnel from the hospital. In their defense, it was 3, 4, and 5 in the morning.... :) First, when I was checking in, the receptionist asked me where the pain was. When I told her I thought it was my spleen, she said, "Okay, so its on the right side?" With a confused look, I said, "No, my left." Afterward I asked my dad, "The spleen is on your left, isn't it?" He said he didn't know and so we looked up which side it was on his phone. It was on the left.
A few minutes later, while talking with the triage nurse, she took my blood pressure. I think the normal blood pressure is something like 120/80. Mine typically runs low, about 95/65 or somewhere around there. For the first time, I saw it today over 100 - it was 105/62. When I told her normally mine is lower, she assured me it was still great and perfectly normal. Then, my pulse. My resting heart rate is normally on the higher side, so I told her this, too, and when it was at 87, she said that was perfectly normal as well. I looked it up this afternoon. According to this chart, average for my age should be more around 74-78. I guess 'normal' is a very relative term in the medical community....
The other personnel were good, however. Had one med student who was very nice, especially since by this time it was 4 in the morning. It takes a lot to be awake at 4 a.m., let alone friendly! One funny (to me, anyway) part of the conversation. He was asking me about my experience with mono, and thought it was interesting that the closest thing I had to an official diagnosis was a chronic case of mono. "Usually mono resolves itself," he told me. "Well, for me it didn't," I replied. I didn't tell him there were three other people who had the same case of mono who agreed with me.... Thankful he was understanding and seemed to be a good listener.

One final funny story, this one from after we got home from the hospital.

Mamma: So does anyone know you went to the hospital?
Me: I told Isaac....
Mamma (interrupting): Well, obviously.
I just smiled.... :)


UPDATE on the medical records situation! We finally have all of them! Just picked them up from the doctor's office! It took a lot of convincing on the phone, but they finally gave me copies of my entire file. Praise the Lord! I'm not sure if your prayers or my dad's persuasive logic were more effective in the long run, but God used it all.

EDIT: It was brought to my attention that I didn't really explain the resolution of the visit..... :) The doctors told me it wasn't my spleen (in the words of the wonderful med student, "well the spleen lives up here," higher than the area my pain was originating from). It could possibly have been a pulled muscle or just a side effect of stress. I'm not currently feeling any pain, praise the Lord.

Recumbency

I wrote in part 4 of an explanation of ME about one of my symptoms called orthostatic intolerance (OI). In layman's terms, OI basically means I have a difficult time doing anything while standing up, or if I do stand up and do something, I'm likely to get more tired while standing up than if I were to remain seated (in a certain posture) or reclining. If I stand up for too long, I get very dizzy. My ears might ring, or noise that is close by will sound distant. My blood pressure drops (and it usually runs low anyway). My vision will blur, or I will be unable to focus with my eyes. If I am really pushing it, I will begin to feel as though I will pass out at any moment. It's been difficult for me to do routine things, such as wash laundry, exercise, take care of a bit of routine cleaning, read, and even Skype with friends.

To say that it is difficult go through life with a condition like orthostatic intolerance is an understatement. But as this symptom and its effect have worsened, I truly am forced to rely more on God's grace and strength. What vestiges of my independent life I had I have had to surrender to Him this week as I've spent more days and more hours in bed than out.

OI reminds me of a word I haven't thought of in a while: recumbency. For those of you who have been around at Garden Heights for several years and knew Bill Davis, you may remember that this was one of his favorite words. Recumbency means to recline, rely, or trust, and is a Puritan word used to describe faith as resting in God. You might not have heard of recumbency, but you've probably heard of a recumbent bike. The idea is the same: recline, or rest. OI is providing me with a unique opportunity to rest in God--physically, and spiritually, when I am tempted to be anxious. God has already provided my atonement and redemption; I trust Him to meet my physical needs as well. The words of a song, "You'll Provide for Me," sum up my thoughts right now.

I will rest in Your sovereign plan
And bless Your gracious hand;
I know Your promise stands
That I'll see Your goodness in this land.

Leaning, reclining, in the state of deepest repose,
~Camille

(Yesterday morning I read an extensive PDF explaining two common types of OI (POTS and NMH). If you are interested in reading it, I commend it to you - but recommend that you have a good chunk of time on your hands. The entire document is 27 pages long. I must confess I only read the first 8 pages and then skimmed the rest.)

How to Bless Your Chronically Ill Friend

About two months ago a friend asked me, "What are some ways people can help you as you deal with this illness?" At the moment, I honestly don't remember what I said. I think I mumbled something about be willing to listen, to really listen. A few weeks later while I was chatting online with the same friend, he called me and let me talk his ear off and cry about something that was really important to me. He asked how he could help, and then he put it into action. That was a huge blessing to me.

Here are ten (much more thought-out) answers to the question, "How can you bless or encourage your chronically ill friend?" Thank you for all of you who have done these things for me.

1.) If you ask how their day is, be prepared for a barrage of tears or a deep sigh instead of the standard lie.
2.) Focus more on heaven as a final means of restoration than a vague hope of earthly healing.
3.) After asking how you can pray for your friend, don't just tell them you will pray with them; pray with them right on the spot.
4.) Be quiet and courteous.
5.) Plan events you know your friend will enjoy with small groups of close friends.
6.) Call. Write. Skype. E-mail. Establish contact somehow in a way that is convenient for your friend as a simple way of saying, "I love you, I was thinking about you, and I am wondering - how can I encourage you today?" It doesn't have to be fancy, and it probably shouldn't be long.
7.) If appropriate, send a small gift in the mail.
8.) Selectively pass on resources you find as an encouragement: pamphlets, articles, websites, songs, etc.
9.) If God has blessed you with discretionary funds, see if you can somehow use that toward a small or great need in your friend's life. I've been blessed in this way many times; it's an incredible feeling - both for the giver, and the receiver.
10.) Compliment physical appearance when appropriate. I don't often feel particularly attractive, let alone presentable... but its so nice when someone looks at me and says, "You look beautiful today," and I can tell they really mean it. 

Also, Rest Ministries has a great list that is quite a bit longer than mine with 52 ways to encourage a chronically ill friend. Check it out! 

Friday Funnies

So, I decided I should do a lighthearted post on some of the funny things that I have said or typed that have resulted in some funny typos or comments. These are all just this week. :)

Texting typos

Me: We need to reply on the Lord.
Isaac: Let's rely on Him, too.

Me: Do you mean Tim your Russian friend? I just had the biggest mental blog trying to figure out who on earth Tim was....
Me, a few minutes later, after re-reading the first text: I meant mental block.


Super stupid spelling errors

• Deadication [Dedication]
• Evel [Evil]
• Yor [Your]
• Migrane [Migraine... apparently I've been spelling it wrong for years!]

Spoken communication

"Did I tell you he got the job at Pizza Hut?"
"At the moment he's at Pizza Hut filling out paperwork and getting into their computer system."

"I'm not sure. I know now that he's working at Pizza Hut he has to stay there for a little while."

All of the 'Pizza Hut' references are supposed to be Papa Johns. All three times I have been corrected. Whoops. 

Wrong word

I called a warehouse a factory.


UPDATE on the documents being faxed: My mamma called the office and asked to speak with the person responsible for faxing my records over to Michigan. Turns out she's currently on vacation and won't be back in the office until Monday. So, please keep praying that it will all get worked out! Thank you!

Appointment Rescheduled

Hey, all!

I just got off the phone, and my appointment has been rescheduled for Monday, August 27th, at 2:30 PM.

If you could please pray about a small request. I asked the doctor I've seen most recently in Erie to fax my records to Dr. Conley's office, and it doesn't sound like they really faxed the entire record. So would you please pray that either (1) they give me my entire record without charging me, or (2) I can somehow convince them to fax my entire record? Thanks! As I have seen over the past few days, I know that God does answer prayer.

Blessings,
~Camille

10,000 Reasons... #3

I know, I know, I just posted #2 a few hours ago, and here I am with a #3. But it is a great #3!

Another $500 check came in the mail today for my medical expenses. Isn't that incredible?!?!

I think that God is trying to prove a point.

He provides through His people. 

10,000 Reasons... #2

So, to review a bit from 10,000 Reasons... #1 and subsequent posts....

1.) I found a doctor to see.
2.) He's really smart.
3.) He's written a great book that is already very helpful in explaining things about my illness and how they can be corrected.

That all is pretty good news. But sometimes, its easy to let the good news get overshadowed by bad news. Like...

1.) An appointment with Dr. Conley costs $295 an hour.
2.) To see him is almost a 6 hour drive.
3.) He doesn't accept insurance. And even if he did, he wouldn't be covered by our insurance.

Looking strictly at the financial side, I could get pretty glum. Sometimes I do. Okay, most times. I worry about finances a lot.

And just to prove how itsy-bitsy my trust in God really is....

Yesterday afternoon my dad handed me a check. For $500. From our church. To help with our medical expenses.

Wow, God. Wow. I repent. I was so wrong to doubt. Thank You for Your church. Thank You for providing. Just... thank You.

And, to my church family....

...for your generosity...

...for your love...

...for your compassion...

...for your prayers...

...for your gift....

I will admit, I was pretty tired, but I wanted to get up and dance - I was so happy.

Love,

~Camille

Undeserved Pain, or Undeserved Days?

The prosperity gospel teaches that God gives His children health, wealth, and fame by right, not as a blessing which can be taken away. It teaches that sickness must be a result of sin. It offers a narrow view of grace and a broad view of retributive justice.

There is no more dangerous doctrine for a chronically ill person than the prosperity gospel. The prosperity or health and wealth gospel is dangerous enough to a lost, unbelieving person, but the dangers it holds for a chronically ill person are every bit as grave.

The devil has nothing to do with my illness. If he has anything to do with it (I don't venture to guess I am as blameless as Job and Satan approached God and made a bet he could make me curse Him), his role is limited according to my Father's direction and supervision.

The fact of the matter is that every day that I have is undeserved. I do not deserve health at a young age. I do not deserve success. I do not deserve the realisation of my dreams and ambitions. I deserve nothing. My days are undeserved, given to me by a Father who is gracious and loving.

I deserve hell, condemnation, and wrath. I deserve pain, sickness, and death. But what I have been given is far, far different. I have been given  a God to bless for any healing from sickness and disease that comes my way (Psalm 103:3). I have been given a Saviour, whose wounds provide for my immediate healing and eventual complete spiritual reconciliation and union with His Father as well as completely physical wellness and an eternity in heaven (Isaiah 53:5).

I have faith that God will heal me. I am not standing in His way, preventing Him with a lack of faith. Fact is no one can stand in God's way (contrary to some prosperity gospel preacher's twisted notions of Scripture), because He is sovereign and no purpose of His will ever be thwarted (Job 42:2).

I'm enjoying this day that I don't deserve. Are you?

Appointment Postponed

This afternoon Dr. Conley called me to inform me that the appointment I was scheduled for on Monday would be postponed due to a death of one of his close family members. My first reaction? I am very sorry that someone died, but... having to postpone the appointment might be a good thing for me. Now I have more time to read this fascinating book and understand the research Dr. Conley has poured his life into.

Dear Abba, 

     I pray that you would be with Dr. Conley and his family today. From reading his book, I know that he believes that the world came about through evolution and does not consider himself to be a religious person, but that he encourages his patients to pray as a means of relaxing. I'm not sure he expects me to pray for him necessarily, but Your Word tells me to continually be in a spirit of prayer, and right now, Dr. Conley is what happens to be on my mind. I pray that You would comfort his heart. Give him physical stamina as it sounds like he didn't sleep much last night. Also, please bring this man to understand the Gospel and know and have a personal relationship with You.

     Please help all of the other patients who have been effected by this, too. Dr. Conley sees patients from all over the world, so I ask that you would help them to be able to reschedule their flights with minimal costs. I hope we can still see him soon, Lord, but if not, help us to rely on You while we wait. 

   In Jesus Name,

          Amen.

words, words, and The Word

These are words that have been swirling through my mind as I have been reading America Exhausted by Edward Conley. What words have been swirling around in your mind lately?

I must admit, there is a less admirable set of words swirling in my head. 

Do you have two sets of words? One of hope, the other of fear? If you do, you're not alone. Most of us have two lists of words - two ways of thinking. Sometimes its hard to tell which is right and which is wrong. But when faced with these two options, we must turn to the One Word that makes a difference - to the word of God. We must dig into This Word, and allow It to dictate the words of life to us. We must allow It to be the light in dark places when all other lights go out. This Word must be our Guide, or we will lose our way. This Word must be our Hope, or we will give into despair. This Word must give us life, or we will take our lives in hopelessness and despair. 

Be in the Word today, friends. 

Lookit what came in the mail!

My information packet and book from Dr. Conley's office arrived today! Excited to make the trip on Monday. This afternoon I've spent hours (literally) filling out the paperwork inside this packet. I am hoping, hoping, hoping and praying, praying, praying that Dr. Conley will be able to help me. And I am thankful for the knowledge that you - the people of God and my church family - are praying, too! Thanks for your e-mails and for checking out the blog. It is much appreciated.

Blessings,

~Camille

How I Feel, Right Now

My brain feels inflamed. At the base of my skull where my brain connects to my spinal cord there is pressure. If I sit upright or stand, the pain increases and may begin to throb. There is also throbbing in my temples, and pressure there, too. All my muscles feel weak. My back hurts, my upper arms ache, especially the lymph nodes under my arms, which seem to be swollen. My chest feels tight, constricted, drawn, and I have a stabbing pain in the upper right corner of my chest.

"But this I call to mind, and therefore I have hope. The steadfast love of the Lord never ceases. His mercies never come to an end." Lamentations 3:21 & 22.

10,000 Reasons... #1

I don't have 10,000 reasons to share today, but I have one! :) 

As many of you know, I have been researching specialists for a while now, trying to find a doctor who is relatively close by to us who seems to know a lot about CFS/ME, has had success treating patients, and can help me get back to relative normalcy. I rejoice to announce that not only have I found such a doctor, but also that I have an appointment with Dr. Edward Conley in Flint, MI next week on August 13th. I have posted his website before, but, again, you can view it here. 

Please pray...

...for a safe trip, there and back. The drive is five-and-a-half hours, one way.

...for helpful information, and if possible, a definitive diagnosis of CFS/ME, one way or the other.

...for energy to make the trip.

...for mental clarity to explain my medical history to Dr. Conley.

Thanks!

Love in Christ,

~Camille

P.S. Also, if there is someone from Garden Heights who has one available, I am looking for a voice recording device to take to the appointment. Whatever I take will need to be able to record for 2 hours, probably from battery power. So possibly something along the lines of a small cassette tape recorder would be ideal. Let me know by e-mail at ednella.godfollower@gmail.com if this is something you can supply for me! :)

Bookshelf

I want to throw out there some resources for anyone who might be interested in learning more about chronic fatigue syndrome/myalgic encephalomyelitis.

First, a book I've actually read. If you are a believer struggling with CFS/ME, you need to read this book. Juli Andrews' story is remarkable. She almost died in a horse riding accident, but God spared her life. She came down with my DLF EBV while she was in college, and the multiple chemical sensitivities and other infections and diseases that have run their course in her body are heart-breaking. Her father records his daughter's story in close detail, interweaving spiritual lessons he and his family learned through her suffering. Buy Polishing God's Monuments here from the author's website.

Second, a book that is more fascinating and informative than anything, Osler's Web. I read parts of this book in the Spring of 2011 and would love to finish it eventually. It tells many stories about various outbreaks of CFS in the 1980s. This book features original research reported in a journalistic style by Hillary Johnson. You can find it at Amazon. The Master's College Powell Library has this book, for any Master's friends who are interested in checking this out.

Third, The Perrin Technique, by Raymond Perrin, an osteopathic doctor from Great Britain. Dr. Perrin believes that CFS/ME begins due to some kind of trauma creating a structural disorder which prevents fluids from draining properly through the lymphatic system. He has successfully treated many patients through osteopathic manipulation and a set of massages. You can check out his website, The Perrin Clinic and buy the book either there (if you happen to live in the UK) or from Amazon, if you are from the US. On the website there is also an informative video about his practice, including patient testimonials. I have not yet had time to  read Dr. Perrin's book, but my mom has, and I have been doing the self-massages on and off since May. I do notice improvement when I am consistent in doing them as frequently as I should.

Fourth, America Exhausted, by Dr. Edward Conley, another osteopathic doctor. Dr. Conley runs the Fatigue, FMS, and Autoimmune Clinic in Flint, Michigan. You can order his book very inexpensively (it is advertised on his website as being free, but you have to pay around four dollars for shipping and handling). I am looking forward to reading this book because Dr. Conley is the specialist I am making an appointment to see in the near future.

Fifth and finally, a book that I have not purchased, read, nor do I have plans to, but have heard it highly recommended: From Fatigued to Fantastic, by Jacob Teitelbaum. Although, I must say, that if I wanted to, I'm pretty sure I would pay for and read Teitelbaum's book over paying the $5,800 to have a consult with him....! He really must be an expert in the field if people pay that much to see him! You can find it available on his website here.

A rather old photo, judging by the glasses. This was at least three pairs ago. :)

An Unlikely Thing

It is well into the afternoon, and yet I have not gotten out of bed because of tiredness that won't let go. And yet, my heart is very, very happy. Today, I rejoice in the life that has been given to me. I rejoice in the weakness, in the delays, and in the hardship. Because... today... I am delighting in God, in Him Himself. It seems most unlikely that I should be happy, but I have been praying daily, "Satisfy me in the morning with your steadfast love, o God, that I may rejoice and be glad all my days." He has been answering that prayer... one day at a time. And it is an unlikely thing that I should be happy today, but my God delights in making unlikely things - yes, even impossible things! - reality.

"This is the day that the LORD has made. Let us rejoice and be glad in it!" Psalm 118:24

Photo credit: Me. From a few summers ago. Flowers in the North Carolina mountains.

"I can't imagine..."

It always encourages me to hear that people from my church are reading this blog. It also slightly scares me, too. What will they think? Will they think I'm crazier than I already am? Will they think I'm making this up? Or will it provide a genuine window into my life? After some feedback last night, I was thankful to hear that people don't think I'm crazy, and are really concerned about how I am doing.

The phrases that I heard most often were things like this:

"I can't imagine what you're going through."
"I could never deal with all of that."
"I don't know how you do it."

My first reaction is, to be honest... I don't know how I do it either. In fact, sometimes I feel like I don't really do anything. It God's grace at work through me that enables me to continue with daily life.

My second reaction is... I don't know how some of you do it. I cannot imagine the pain some of you deal with, the situations you find yourself in taking care of elderly parents, or the struggles you face raising your children. I cannot imagine any of those things, in the same way you cannot imagine my limitations and challenges.

This exchange of mutual, "I can't imagines..." reminds me of Paul's words in 1 Corinthians 10:12 & 13.

"Therefore let him who thinks he stands take heed lest he fall. No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it." 

I am thankful that God does not ask me to bear your trials, and I know most of you are thankful He has not given you my set of trials. But I am thankful (sometimes, right now I am... remind me of this later when I seem to need it!) that He has entrusted these trials, this suffering, to me. He has not revealed His reasons or the timetable, but He has commanded me that it is His will for me to rejoice during this time of testing.

"In everything give thanks, for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:18

So as you read this blog, please, don't admire me for my strength. I promise, I have more moments of utter weakness than sheer strength. Don't pity me for my pain. Pray for me, that my faith would be stronger, that my surrender would be fuller, that my heart would be steadfast, and that my gaze would be upward. I am happy to do the same for you. One of the good things about being mostly house-bound with no where to go, no one to see, and nothing to do is that I have a lot of time to pray for people. If you need prayer for something, please, let me know. I promise you I will forget, but I have a journal and a pen that will remind me every day when I look at my list of people to pray for. Leave me a comment, or e-mail me at ednella.godfollower@gmail.com.

God bless you more.

Psalm 130 - Out of the Depths

Favorite lines:

"And all my questions that are unresolved

don't change the wisdom of Your will."

This song has always been a challenge to me since the first time I heard it. Do I wait for my God more than watchman for the morning? Do I wait for Him at all? Or do I stamp my foot, cross my arms, and demand a hearing? Do I cry out of the depths, or remain silent? Do I remember that His mercy covers my sin?

This song has been a good one for me to go to this week. Horace has been around a bit (he's my chronic headache, for those of you who haven't been properly introduced yet) and beyond Horace I have this horrible ache in my brain itself that seems to have started since Sunday PM. Its as though I can feel inflammation in my brain itself... and it hurts! I would be thankful if it would just go away... but that might not serve my God's will and purpose... so I am posting this song as a true expression of the wish and prayer of my heart. I hope it ministers to and challenges You as much as it has me!