Stole this from Noelle's blog.
www.myjourneythroughlymes.blogspot.com
Monday, October 22, 2012
Two Worrisome W's
Nine days ago I rented Noelle a wheelchair. Not because of a passing injury that will heal. We have no time schedule. Her pain is so intense and her fatigue so overwhelming that if we want to leave our home she needs a wheelchair. Sometimes it is bad enough that I carry her up and down our stairs. My heart breaks as she begs me to take her to watch her soccer team play. I load she, her sister, the wheelchair, and blankets into the car. I push her over grass and other obstacles and watch her, watch her friends run. I don't understand, Lord.
Almost two weeks ago we met with Noelle's teachers. We dropped three classes hoping she could manage four of them. Since that day she has been to school once. Yesterday I emailed her guidance counselor to withdraw her from classes. This can't be happening. She is the one with desire, a plan, study skills!!! She wants to be a nurse. She wants to get a 4.0. She is so social. Now she cannot concentrate. I mourn with her. I pray that this delay in her plans, her dreams, is short. Some days it is almost unbearable. But I am supposed to be the strong one. I pray her friends will take notice that she is missing from their circle and will love her, invite her, text her. I don't understand, Lord.
Sometimes I think about the words "chronically ill". Do I have a chronically ill child?
Chronic:
-continuing a long time or recurring frequently
-having long had a disease or weakness
-having long duration.
I guess four plus years of battling symptoms counts. I guess spending the last month mostly in bed counts. I don't understand, Lord.
I don't know how to mother a chronically ill child. I love her so much. Those of you without an ill child are saying that is enough. Those of you with experience...any ideas? How do I leave her to do things? How do I encourage her without pressuring her? How do I deal with seeing her in pain every day?? How do I have enough left for Scott, Jake, Teme and Sabrina?
I DON'T UNDERSTAND, LORD!!
Almost two weeks ago we met with Noelle's teachers. We dropped three classes hoping she could manage four of them. Since that day she has been to school once. Yesterday I emailed her guidance counselor to withdraw her from classes. This can't be happening. She is the one with desire, a plan, study skills!!! She wants to be a nurse. She wants to get a 4.0. She is so social. Now she cannot concentrate. I mourn with her. I pray that this delay in her plans, her dreams, is short. Some days it is almost unbearable. But I am supposed to be the strong one. I pray her friends will take notice that she is missing from their circle and will love her, invite her, text her. I don't understand, Lord.
Sometimes I think about the words "chronically ill". Do I have a chronically ill child?
Chronic:
-continuing a long time or recurring frequently
-having long had a disease or weakness
-having long duration.
I guess four plus years of battling symptoms counts. I guess spending the last month mostly in bed counts. I don't understand, Lord.
I don't know how to mother a chronically ill child. I love her so much. Those of you without an ill child are saying that is enough. Those of you with experience...any ideas? How do I leave her to do things? How do I encourage her without pressuring her? How do I deal with seeing her in pain every day?? How do I have enough left for Scott, Jake, Teme and Sabrina?
I DON'T UNDERSTAND, LORD!!
Monday, October 8, 2012
My prayer
Psalm 25
(Paraphrase by me)
In You, Lord my God, I put my trust. I trust in You; do not let me doubt, nor let my circumstances triumph over me. No one who hopes in You will ever be alone. Show me your ways, Lord, teach me Your paths. Guide me in Your truth and teach me, for You are God my Savior, and my hope is in You all day long. Remember, Lord, Your great mercy and love, for they are from old. Do not remember the sins of my youth and my rebellious ways; according to Your love remember me, for You, Lord, are good. Good and upright is the Lord; therefore He instructs sinners in His ways. He guides the humble in what is right and teaches them His way. All the ways of the Lord are loving and faithful toward those who keep the demands of His covenant. For the sake of Your name, Lord, forgive my unbelief, though it is great. Who then are those who fear the Lord? He will instruct them in the ways they should choose. They will spend their days in peace, and their descendants will inherit mercy. The Lord confides in those who fear Him; He makes His presence known to them. My eyes are ever on the Lord, for only He will release my body from pain. Turn to me and be gracious to me, for I am lonely and afflicted. Relieve the troubles of my heart and free me from my anguish. Look on my affliction and my distress and take away all my pain. See how numerous my afflictions and how fiercely they attack me. Guard my life and rescue me; do not let me be downhearted, for I take refuge in You. May integrity and uprightness protect me, because my hope, Lord, is in You. Deliver me, O God, from all my troubles.
Noelle had a rough weekend. We are doing a study on spiritual disciplines at church and we are studying prayer this week. I am trying to figure out how that needs to look in my life. I know I need more. This paraphrase is for Noelle. I am going to try and pray this for her, over her, frequently. She had to come home early from homecoming, no bonfire for her. She had to watch her soccer team laying on a blanket. That was the only time she left her bed yesterday and she is there again today.
We watched a documentary on Lyme's disease, "Under our Skin". Scared me.
Saturday, October 6, 2012
Homecoming
The gang's all here, well at Ali's house!
L to R
Dylan, Noelle, Krystal, Dakota, Kelli, Ali and Garland
They are all headed out for pizza, dancing and a bonfire!
Have fun!
Saturday, September 15, 2012
Overwhelming
Overwhelming...that is my word for the week. Noelle's appointment was moved up. We saw Dr.
Crist in Columbia, Missouri on Wednesday. Great thing number one is that Dr. Crist is a Christian. Number two is that his hope and desire is that Noelle will be symptom free. The road there may be a little tough. Her joint pain is very bad at this point. She will be doing heavy duty antibiotics for at least four months. She has started her first one. We will be adding supplements as we proceed. We have heard that the pain is one of the first symptoms to go. Please pray that for Noelle. She has a lot of pain in her hands and feet as well as still having severe headaches. Pray also for understanding teachers as she is still missing a lot of school. She is a very good student so it is hard for her not to be stressed about missing school.
Scott's appointment is in January at this point. Please pray that his appointment will be moved up as well. Jake and my blood tests revealed that we also have markers for tick born infections. Technically in the Midwest it is called Masters disease not Lyme's disease, different tick. Who knew. So he and I have appointments in February. Our symptoms are not as severe so pray that we will have wisdom regarding treatment. The appointments are not covered by insurance and neither are some of the treatments.
The first thing that they want us to do is start a gluten free, nightshade vegetable free diet. This diet is anti inflammatory. So if you have any ideas or recipes that are gluten free, without white potatoes, tomatoes or peppers...send them my way! I tried to make Swedish pancakes this morning with gluten free flour...epic failure!
On a more fun note, we are ramping up for fall sports. Teme is playing football, Sabrina has dance, gymnastics and soccer. Noelle is hoping to feel well enough to play some soccer. And...Jake got a job! He is working at a call center fielding calls for Toro.
Crist in Columbia, Missouri on Wednesday. Great thing number one is that Dr. Crist is a Christian. Number two is that his hope and desire is that Noelle will be symptom free. The road there may be a little tough. Her joint pain is very bad at this point. She will be doing heavy duty antibiotics for at least four months. She has started her first one. We will be adding supplements as we proceed. We have heard that the pain is one of the first symptoms to go. Please pray that for Noelle. She has a lot of pain in her hands and feet as well as still having severe headaches. Pray also for understanding teachers as she is still missing a lot of school. She is a very good student so it is hard for her not to be stressed about missing school.
Scott's appointment is in January at this point. Please pray that his appointment will be moved up as well. Jake and my blood tests revealed that we also have markers for tick born infections. Technically in the Midwest it is called Masters disease not Lyme's disease, different tick. Who knew. So he and I have appointments in February. Our symptoms are not as severe so pray that we will have wisdom regarding treatment. The appointments are not covered by insurance and neither are some of the treatments.
The first thing that they want us to do is start a gluten free, nightshade vegetable free diet. This diet is anti inflammatory. So if you have any ideas or recipes that are gluten free, without white potatoes, tomatoes or peppers...send them my way! I tried to make Swedish pancakes this morning with gluten free flour...epic failure!
On a more fun note, we are ramping up for fall sports. Teme is playing football, Sabrina has dance, gymnastics and soccer. Noelle is hoping to feel well enough to play some soccer. And...Jake got a job! He is working at a call center fielding calls for Toro.
Sunday, August 26, 2012
Lyme's Disease
Quick update on health in the Larson household. Scott tested positive for Lyme's last summer, I believe. Noelle has just tested positive. It is likely that she has been suffering from the symptoms for about 4 years. Jake and I will be tested tomorrow. We have all had tick bites. Sabrina also had one this summer but for now we will wait to test her.
Please pray for us as we pursue treatment. The two doctors we are aware of are not local. The one we are intending to go with is in Missouri. Noelle has an appointment in November, Scott in January:( Nothing is covered by insurance. The materials that they sent were a little scary. Lyme's disease and its treatment are controversial. Please pray that we would be led to the right doctor, that he would have wisdom as he treats us, that the side effects of treatment would be minimal. Please pray that Jake and I would not test positive. It seems likely that Jake will. Please pray that if we are to stay with this doctor that our appointments would be moved up. We have told them that we will travel within 48 hours if there is a cancellation.
I considered including a picture of a tick/tick bite, but it was nasty. Each of our stories with tick bites have been pretty funny. Not so much now. I found mine wiggling in my abdomen and FREAKED OUT! We found Noelle and Jake's first bites as they got back to school hair cuts about 4 years ago. We had to leave Great Clips without finishing their hair cuts. Jake's came right out. Noelle's was very stubborn. So Scott "gently" slapped her to distract her as he removed it:) Jake has had many since then. Scott has also had numerous bites. He is the only one we know to have the rash. Though since Noelle and Jake's were on their heads that may have hidden the rash.
We appreciate your prayers!
Please pray for us as we pursue treatment. The two doctors we are aware of are not local. The one we are intending to go with is in Missouri. Noelle has an appointment in November, Scott in January:( Nothing is covered by insurance. The materials that they sent were a little scary. Lyme's disease and its treatment are controversial. Please pray that we would be led to the right doctor, that he would have wisdom as he treats us, that the side effects of treatment would be minimal. Please pray that Jake and I would not test positive. It seems likely that Jake will. Please pray that if we are to stay with this doctor that our appointments would be moved up. We have told them that we will travel within 48 hours if there is a cancellation.
I considered including a picture of a tick/tick bite, but it was nasty. Each of our stories with tick bites have been pretty funny. Not so much now. I found mine wiggling in my abdomen and FREAKED OUT! We found Noelle and Jake's first bites as they got back to school hair cuts about 4 years ago. We had to leave Great Clips without finishing their hair cuts. Jake's came right out. Noelle's was very stubborn. So Scott "gently" slapped her to distract her as he removed it:) Jake has had many since then. Scott has also had numerous bites. He is the only one we know to have the rash. Though since Noelle and Jake's were on their heads that may have hidden the rash.
We appreciate your prayers!
Subscribe to:
Posts (Atom)