The battle is real!

There are many days and many moments when I have feel like I am in battle. Battling to remain hopeful, battling to recover, and battling to take care of my family amidst a body that doesn’t want to function properly. And especially battling through scripture and prayer when it feels like the enemy is wanting to devour me and my family. The battle has been more real to me and reading the psalms has helped me realize that David knew how fierce the battle could be. I am so thankful that he wrote his psalms (Ps 46,63) down because it has brought me incredible perspective, insight and has motivated me to fight. Like never before I find myself praying about everything big and small. I have been humbled sometimes when I realize that I should pray more for the little things. I had a great reminder of this last week.

I have needed to buy some pajamas and jeans for Bennett and it seems that it takes me forever to do errands like that right now. It all depends on what other activities we have and my pain levels whether I can do errands or not. I honestly didn’t pray about it, but knew it would eventually get done. Last week there was a box left at our house by my friend who has blessed us many other times with clothes. I probably don’t need to tell you what was in the box….. not one, but four pairs of pajamas and several pairs of pants. I admit, I was teary and so thankful. I often tease my friend and tell her that she must get memos from God because every time she brings clothes to us it is exactly what we need.

I am so glad that he cares for the big things too. I have been battling in prayer for Bennett too. Recently, we discovered he has a learning disability. We suspected this last year, but thought that with practice it would improve. God led us to go and have him assessed at the Baylor Speech clinic which gave us great insight into his needs. We were so thankful to have their expertise and were so humbled when he got a therapy spot for four hours each week. Yes, it is an adjustment and I feel like I am on a very steep learning curve. But the amazing thing is that because of my illness, my life has remained simple and I have time to learn. I really believe through prayer Bennett has adjusted very well to the therapy and I see benefits already. I find myself constantly having to give Bennett over to God knowing that he is in control and that he loves Bennett so much more than I do. There is no doubt that God gave Bennett a special personality for a reason. His laughter and smiles and even his made up songs and bad jokes have brought me joy during the hard days.

I read this quote recently which I thought captured it well

It puzzles me; but Lord, You understand
And will one day explain this crooked thing.
Meanwhile, I know that is has worked Your best
Its very crookedness taught me to cling.

So I will thank and praise You for this puzzle,
And trust where I cannot understand.
Rejoicing You hold me worth such testing,
I cling the closer to Your guiding hand.

A day at a time

Once a week and it usually happens on a Thursday I have and need a rest (bed) day. To some it may seem like an inconvenience but for me it is a necessity and believe it or not usually a blessing. Several people have said to me that on the days that the boys are both at school I probably struggle not to do too much. Occasionally maybe but usually not. I have had to let go of a lot. No, I don't like to be in pain or feel terrible, but the days in bed are the ones when I learn the most. Those are the days when I do a lot of praying and thinking and reflecting.

One of my favorite times of day is at 830am. This is not because I have just dropped off Cody, but because that is when I listen to the Focus on the Family broadcast. Prior to my illness I did not listen and I wish I had. I have been so blessed and inspired by listening to different speakers. This morning was no exception as I listened to Dr. David Jeremiah talk about his new book"When your world falls apart". Listening to him talk about his battle with cancer and what he learned sure resonated with me. Not because I can relate to having cancer but about God's presence, peace and provision during something hard. Interestingly enough he is a speaker that really ministered to me during the first part of my illness. I find I can relate a lot more these days to people who are in pain and I think a great thing is that I am more willing to go to people's place of pain without being uncomfortable. There have been several times in the last month when I have thanked God for using my pain to minister to someone. No, I can't physically help people as much like I used to, but I sure can pray and encourage people.

The good news from the blood work I had done is that I do not have an inflammatory disease ie. lupus, rheumatoid arthritis etc. This leads us to believe that the pain and symptoms are still from my nerves recovering. I have to be honest and say that it has been hard to rest in my diagnoses mainly because some of my symptoms don't match up to the typical case of Guillian Barre. Following the most recent blood work I have had to make a decision to rest in what we know right now and take a day at a time. This past weekend I was more convinced than ever how much my medicine is helping. I was getting low on medicine and had not made it to the pharmacy to get my new prescription. I knew that Perry was going to go grocery shopping on Sunday and decided to wait until then. Unfortunately, I did not realize that the pharmacy closed early. I had no medicine to take at night and as a result slept very poorly because my legs where burning so bad. I am so thankful that we found something to help and I am trying to slowly increase it during the day to get more relief. Please pray that I will be able to tolerate it. From someone who never took medicine it is a big adjustment to constantly be thinking about when my next pill is due. This is an interesting season.

God cares

It is so good to have reminders that God cares about the little things. Here are some recent examples.
1)Our boys are big "WipeOut" fans. Last week it was WipeOut night and the boys were eagerly anticipating their favorite show. What we didn't realize was that it was a two hour show that evening. When eight o'clock came and it was time for bed they were both in tears because they wouldn't be able see all of it. Finally we were able to console them with the fact that we would tape it and they could watch tomorrow. I was praying that the taping process would work properly or I would have some very upset boys. After they showered, I for some reason went to check the VCR and noticed that it was turned off. AHHH!! Perry often automatically turns it off at night and so he did it without thought. Well, thankfully not much time had elapsed and we were back on track. The absolutely amazing thing was that at exactly 900 the video tape ran out of tape. Both Perry and I realized that if he wouldn't have turned off the VCR the boys would have missed the best part of the show. Great reminder that God understands the big picture and we often do not! So glad he is control and I am not.

2)At the beginning of this week I had another neurologist visit and I had been praying that God would help me communicate my questions and concerns. I am so thankful that I found this new neurologist. He is such a good listener and very caring and asks good questions. I feel like he treats me like a person and not just a another patient or number.
We are thankful that the new medicine called Neurontin is helping me sleep at night and my headaches have lessened which is wonderful. The challenge has been finding relief during the day. My body hates activity. I have a lot of muscle fatigue, burning, tingling and deep aching. Some days it is more challenging then others, but it greatly affects my day and my ability to care for my family. There are symptoms that I just don't understand.
We would appreciate your prayers as we try to understand my symptoms and also try to find something to make me more comfortable. The good thing is that my doctor ordered a few more blood tests to investigate some avenues we had wondered before but had never explored.

Sorry, that was the backdrop to my "God cares" story. After my appointment I went next door to Providence to get my blood work done. I thought I had lots of time before I had to get Cody from preschool, but I was wrong. The crazy thing was that the admitting desk put it in the system I couldn't come back the next day. The admitting desk is downstairs and I didn't realize there was a long line upstairs at the lab. I needed help from God because I had already done a lot of walking and was hurting and I knew I would have to get Cody and come back up to the lab and possibly wait a long time. The receptionist didn't give me much hope that I could get in quickly even if I came back within the next hour. So, my strategy was to trust God, get Bush's chicken (that always helps) to keep my hungry five year old busy during the wait and hope for miracle. Guess what I found when I returned ...... two people waiting and a unusually patient son during the whole process. Thank you God for caring for little things!!!

Over a year

It's now been over a year since Rhonda was diagnosed with GB. In many ways life is much less stressful and for that we are very thankful. We can exist at the basic level as long as we do very little extra. However, the last few months have actually been a bit discouraging. Rhonda's recovery seems to have stalled. She also continues to experience significant leg pain if she increases her activity. The first week of school was certainly one of those occassions. It has brought back some feelings and stress associated with the past year. As always, we hope and pray for improvement.

No relief yet

Thank you for praying!! I am tolerating the medicine(less drowsiness), however I have had only a little relief from the pain. Because I have to slowly increase it, it will be a couple weeks before I am on the maximum dose. I am trying not to think much beyond this because I continue to pray and hope that it will work.
It has been a little challenging since the boys came home because my pain went from manageable to difficult to manage. It is amazing how my increase in activity affects my legs and my head. Thankfully, Cody will start preschool on the 21st each morning and Bennett will start on the 26th. We are hoping that this will allow me some rest time each day so that I will be able to handle the activity of the rest of the day.

New medicine

Please pray as I try to adjust to some new medicine that will hopefully help the nerve pain in my legs. A couple of months ago I started taking medicine in hopes that it would help. Intially, I thought it was working but that was short lived and I continue to be really uncomfortable when I increase my activity.
Last week it was obvious when I met with the doctor that I needed to get off of it and try something different. Thankfully the new medicine has had minor SE so far, but I feel so drowsy and drugged. Supposedly this will decrease in time. I am only taking one and I am suppose increase it to six a day. I don't know how my body will respond to it.
Perry and the boys return Tuesday evening and I am praying that God will help me take care of the boys and give me wisdom with how to increase the medicine.

Contentment

It was three or four years ago when I bought the book Calm my Anxious Heart by Linda Dillow. It had been highly recommended to me and so I was interested. I did not necessarily feel anxious or feel that I was discontented but nonetheless I wanted to try it. After looking at the table of contents ( content to be me, content with circumstances, trusting God with the what ifs and if onlys) I knew I needed this book and since it has become one of my favorites.

It was hard to get past the beginning pages. She talked about a friend who had found her mother's journal. In it she discovered her mother's key to contentment. Her mother had worked with the pygmies in Africa for fifty-two years. This is what it said:

*Never allow yourself to complain about anything-not even the weather
*Never picture yourself in any other circumstances or someplace else
*Never compare your lot with another's
*Never allow yourself to wish this or that had been otherwise
*Never dwell on tomorrow-remember that tomorrow is God's, not ours

Wow! Try to apply these for even one day.

There are so many treasures in this book but I want to share a couple of highlights.
* "He infuses contentment into us through his Word"
*"Contentment comes from a proper relationship to God, not from a response to the circumstances. Our what ifs will either drive us to God and faith or they will drive us to worry and dependence on self"
*"Only as our hearts are fixed on our Sovereign, Loving Lord can we be at peace in the midst of the What ifs. We can only trust God when our focus is on Him and not on our circumstances"
* "Our anxiety should be used as a springboard to pray specifically"

There are so many wonderful things in this book and I pray for the grace to apply them in my life.