Be Patient

I saw Dr.Lerner on Monday. His summary: be patient. He said this is the hardest stage of the game because there has been a little bit of improvement, but nothing that changes the lifestyle back to its old self (or what we're aiming for- better). I continue to rest all but 4 hours or so a day. I take a morning an an afternoon nap. I have continued to get the heart palpitations so he started me on propanal. He also wants me to get an MRI on my knee and a test on my hand because I have joint pain on both of them.

I'm continuing to read, study my Bible, watch sermons on the computer (and occassionaly trashy tv) and have recently started cooking twice a week. Grocery shopping is still really hard for me as are social situations and loud noises. I have a great neighbor who goes outside and yells at trucks who park in front of our town homes to try to protect me from the noise. That is one positive that has come from all this- a year after we have moved in I'm finally getting to know our neighbors. We got some chairs for our porch. I can sit out there while the kids climb the trees and we can meet people as they walk by. My body is still having a rough time but my mind is doing okay.

3 good days

This week I enjoyed 3 days of energy! The kids started school on Friday, so I'm wondering if there is a direct correlation between the amount of rest I'm getting and how much better I'm feeling. I'm sure there is. I still have not been doing anything except sleeping, reading, making meals (ok, reheating them) and paying bills but that is about all my body can handle at this point. It is amazing how busy I used to be and how pared down life is now. I've found I can buy most everything I need, except perishables, online. If we can fork up the extra cash I can get pretty decent prepared meals and my kids have learned to do a lot of stuff on their own. Life is a lot simpler now. I feel lonely a lot, because the major "thing" missing from my life is people. But, I am starting to hear God's voice on the subject, and realizing how rich my time talking with Him can be if I take the time to do it. So often I want instant gratification, but He offers so much more if I will just be patient.

I AM

"I was regretting the past and fearing the future. Suddenly my Lord was speaking, "My name is I AM." He paused. I waited. He continued, "When you live in the past with its mistakes and regrets, it is hard. I am not here. My name is not I WAS. When you live in the future, with its problems and fears, it is hard. I am not there. My name is not I WILL BE. When you live in this moment it is not hard. I am here. My name is I AM."
-Helen Mallicoat

Keep on Keeping on

The waiting continues. The head pressure is constant. About three weeks ago when Jim came home from work I was in absolute agony with head pain. I didn't know if I was going to have to go back to the ER. He got on the phone and started calling places nearby to try to get me a massage. Anything to try to get some relief. The only thing he could find that time of night was a 15 minute chair massage. Was it really worth it? We decided it was and I drove 2 miles to the place. When I got there the woman told me that she specialized in migraines because she used to have brain cancer and she had migraines that lasted for days so she now wanted to help people with headaches. Wow. Thank you, God, for sending me to the right person.

When I saw her again she had done some research on CF and said that the reason I feel so much pressure is because the lactic acid builds up in my body from not moving around. And then it travels upward and lands in my head. Quite a problem when I'm not able to move around to fix the problem. I'm seeing her about once a week and am able to get relief for about 2-3 days afterward. I am also trying to do about 10 minutes of stretching a day to try to get the blood flowing.

It is tough to try to find the balance between moving enough to keep my body from getting sore and too much that it gets headaches/pain. Right now I can do about 2-4 hours a day. That pretty much includes getting the kids dressed and breakfast and then off with the sitter 9-1, playing with them for an hour after their nap or movie and fixing them dinner before Jim gets home. Everyday Grant begs me to play more. I have to remind myself this is not forever.

Peaks and Valleys

I had such a great weekend. I began to dream about what life in the real world was like. Then, Monday at 4pm it hit me like a bus. It was like I'd been drugged again. I've been down ever since. Ugg. My mother in law wrote me this encouraging note yesterday:

"Shannon - Believing this battle of the viruses (between the good and the
bad) will be over for you soon! Keep believing for your healing - stay open
and receptive to The Holy Spirit - make it a habit to "receive".

My take on Dr. Lerner's stuff is that the "awful" days during treatment are
the result of the battle going on between the virus & the anti-virus - so
it's a good thing. No battle of any kind is without pain (from discomfort
to debilitating pain), & soldiers all know the risk, "they could die in
battle". Killing the enemy(the bad virus) is worth the risk because
living with the enemy is not how God intended life to be. We all know
people who have lived with terrible diseases their whole lives - they
suffered...it so hurts the Lord!

Jesus Christ came on the scene and showed us that He has power over the
enemy! He has power over every virus! The enemy is out to kill, steal &
destroy man. God intends to give them life...and life abundant!!!

Praise God for Dr. Lerners' who battle to eliminate diseases so man can live
as God intended. God can pour out His healing through anti-virals, meds,
through the laying on of hands, and sovereignly. According to the Gospels,
God prefers to work His healing "through man"! On our part, we just have to
be receptive to whatever, however & whenever God wants to heal us.

We should all be praying for Dr.'s and Scientists who labor to eradicate
disease! They are right there on the battlefront! And praying for men and
women of God to rise up in Faith and "go and do the work of Jesus Christ"
"...heal the sick, cast out demons,raise the dead...."

With the Power of the Lord, the good guys,(anti-viral meds) will win this
battle you and dad are going through. Know that your family has you both
covered in prayer for Grace, protection, strength, and for the Joy of the
Lord in the midst of your battle. And Shannon, your children will reap good
from what the enemy planned for evil! You're so loved. mom"

Holding steady

I am continuing to hold steady. My body is happy with two naps a day and an activity in between. I am continuing to avoid social situations, loud noise and exercise because all those tend to wear me out quickly. I have started doing about 5 minutes of yoga a day and boy am I sore! It has been a long time since I've used those muscles! I didn't have any headaches over the weekend and we had a family picnic at the park last night. The first of the summer. As we were walking there I watched the kids scurrying ahead of us, happy and singing and I praised God for how far He has brought me. Verse of the day: "Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done wonderful things, things you planned long ago." Isaiah 25:1

It is not about me

I hit week 9 today. It has been a big week. The good news is that my energy level has really increased this week. I still have to nap twice a day but in between naps I have energy to get off the couch. This week I did my own grocery shopping (only the third time since I started Valtrex!), I played with the kids a little, I folded laundry and went to the Post Office- all things that would have forced me into a place of serious pain (from fatigue) even a week ago. A real victory! I attribute it all to God.

The rough part of the past week or so has been increased migraines. I have been struggling with migraines for the last two years, but had one of the worst ever last week. After 3 days of a constant headache and lots of medication I could not get it to subside. Finally, I had to go to the ER. They were able to take away the pain through a cocktail of medications which put me to sleep for about 36 hours. Since then the pain has been on and off. I have been going to the chiropractor and taking about 5 minutes a day to stretch. Lsst night Jim lovingly arranged for me to have a 15 minute professional chair massage. To quote the woman exactly, "I don't normally tell people this because everyone comes in here complaining of pain, but I think you should know that your neck feels like cement." So, at this point I don't know if the migraines are chemical or mechanical from laying around so much. My hope is that as I start moving more they will decrease. I made an appointment with a neurologist to check it out.

As I spent time today talking to God, asking Him for complete healing he brought this quote to mind: "Ultimately, God isn't good because he does good things for us. And God isn't good because of something in us. God is good because of something in him." (Chip Ingram)

His Love Never Fails

Zephaniah 3:17 says:

"The Lord your God is with you,
he is mighty to save.
He will delight in you,
he will quiet you with his love,
he will rejoice over you with singing."

Commentary I recently read by Chip Ingram really resinated with me. In short he reminded me that I could feel God's absolute pleasure and delight in me--regardless of how I perform during this season of life. He has reached past my inadequate offering and my insecure efforts and embraced me as His child. He rejoices over me as I do over Grant and Kate regardless of if they earn it. Wow. I wish I could remember this every day.

Surviving the first 6 weeks

The Jarisch-Herxheimer response was in full effect about a week later. Every morning when my alarm went off at 7:30 for me to take my first Valtrex the thoughts began, "I can't do it. I can't do it." The thought of getting out of bed was torture. I eventually dragged myself out of bed. No shower, of course- that was waaay to much work. By the time I got downstairs to fix myself a protein shake and the kids a frozen waffle my head had so much pressure throughout it, it felt like it was going to burst. I had trouble stringing thoughts together, which is known as the "chronic fatigue fog." I felt nauseous and sometimes light headed and I would avoid moving around the kitchen at all costs because my body was so exhausted. If I did move too much and become overly fatigued then the pain would set in. It started at the waist and moved all the way up to the top of my neck. Every muscle, every joint. Sometimes a migraine accompanied it. Meanwhile the kids came downstairs bubbly and ready to engage for the day. I tried to put on a happy face, but was so short with them. Or I gave into them. Years of discipline and consistent parenting felt like they were going down the toilet. Anything to keep them quiet. Sometimes they seemed not to notice, other times Kate would ask if I still had my "sleepy sickness" or Grant would ask "how much longer until you can play with me again?" After breakfast we would quickly move to the couch for a movie until I could get them out the door to camp. Sometimes on the way home from driving them to camp I would pray outloud, "Jesus, help me make it home before I fall asleep." It was so intense.

As soon as I got home the sleeping began. It felt like someone put a drug in my drink. It wasn't a leisurely sleep. There was no choice in it. If I prolonged it for any reason it felt like torture. Thankfully, if I could sleep about 9-11am I was pretty awake and happy (when I say happy it still felt like I had the flu, even at my best) until about 1pm. Then it was back to bed until about 4pm. At 4pm I had some energy until about 6. When I say energy it wasn't energy to do anything besides stay awake. There was no grocery shopping, cooking or trips to the park. Occassionally I would sit on the porch and let the kids play with the hose or climb the trees. Or lay on a friend's couch while the kids played in their basement. But, nothing that required movement. One day Grant got pink eye so no one would watch him (I couldn't blame them) and just the energy required to be with him for one day put me in bed and constant pain for an entire week. I actually called Dr.Lerner because I thought something serious must be wrong with me. No, he said, you just over did it.

Life continued like this for about the first 6 weeks. Thankfully people stepped in to help with the kids, groceries and meals. I was able to rest, read and pray. Sometimes I'd look out the window and see someone running and get jealous. Sometimes I'd feel guilty and doubt my self worth as a non-contributor to society. But, other times I was uber thankful for my family and friends that were meeting my basic needs and my God that loved me in spite of my lack of action. I searched the scriptures for encouragement. The promise I am holding onto is this: "but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:30

A diagnosis

It just so happened that the specialist that I made an appointment to see was 1.2 miles from my house. People fly in from all over the country to see him. And I could walk to his office. Well, the old me could have at least. When I went to see Dr. Lerner (http://www.treatmentcenterforcfs.com)he did a host of tests including a physical examination, chest X-ray, electrocardiogram, complete blood count, urinalysis, serum aspartate and aminotransferases (AST, ALT), glucose, thyroid stimulating hormone, sodium, potassium, uric acid, alkaline phosphatase and creatinine measurement, 24-hour Holter monitor, electrocardiogram,EBV serum IgM viral capsid antibodies, EBV early antigen diffuse (EA) ELISA HCMV(V) IgG and IgM serum antibodies to viral capsid, strain 169 HCMV,HHV6 IgM and IgG serum. (This list is mostly for my documentation.)

To say the guy was thorough was an understatement. He spent hours with me, much of which was just listening to my story. He nodded and didn't act put off or surprised by any of what I shared. When he was done he said he was 95% certain I would be completely well within one year if I followed his instructions. Wow! Finally, a diagnosis! He said I had chronic fatigue symdrome caused by Epstein Barr. In addition to the blood and heart tests (flat t-waves) that would later confirm my condition, Dr. Lerner used the checklist of symptoms that Mayo clinic does:

Symptoms
By Mayo Clinic staff

Fatigue (me)
Loss of memory or concentration (me)
Sore throat (no)
Enlarged lymph nodes in your neck or armpits (me)
Unexplained muscle pain (me)
Pain that moves from one joint to another without swelling or redness (me)
Headache of a new type, pattern or severity (me)
Unrefreshing sleep (me)
Extreme exhaustion lasting more than 24 hours after physical or mental exercise (me)

As is news to so many people, this disease goes beyond the typical American's complaint of being tired. If I had a dollar for every time someone told me they knew just how I felt...

He put me on an antiviral medication called Valtrex. Valtrex is typically used to treat genital herpes (which I don't have) through a once a day dose. Through Dr.Lerner's research he has found that when patients are put on 4x the normal dose, Valtrex is able to battle prolonged Epstein Barr. The downside- the first 2-6 weeks my body would most likely go through Jarisch-Herxheimer response as my body tried to find a new equilibrium and the Valtrex attempted to fight the virus. This would be a positive sign that Valtrex was doing its job. And so my journey to wellness begins.