This Roller Coaster of Life

I can’t believe it’s been 9 months since I last posted on here. I had such good intentions of updating, then life happened. I thought the roller coaster we were on was one with a few hills and descents- little did I know last July that just around the corner lurked a roller coaster that would rival anything I had dealt with before. Due to health issues just about all home reno has had to stop. I’ll explain more on that in a bit. Gene’s recently changed jobs, but that was for the good and we are so happy about it. We have had a lot of doctors’ appointments & a few therapy sessions. In August and September I took the girls to a combined total of 50 appointments. We stopped seeing the chiropractor in August when we realized the adjustments were causing us to have more dislocations (this may not be the case for everyone, but all 4 of us agreed on this for us). In the last 9 or so months Hannah, Rachel, Caroline, & I also started getting treatment for Fibromyalgia. We have had a few ups and downs during this time and I wanted to share some of them with you.

Sarah has been much improved in the last few months. The first struggle since her breakdown was overcoming her feeling of rejection and grieving that. The next biggest struggle was her eating. It seemed like most everything caused her stomach issues, which in turn caused extreme pain, which led to anger and lashing out. Sarah is mentally about 6, deaf, and autistic. When she begins to hurt, she doesn’t understand where it is coming from and doesn’t know how to communicate that, much like a young child. We have been doing a lot to work on her gut health with probiotics as of late and have seen tremendous strides. She is happier, more engaged, and sleeping much better. 

Caroline’s health journey has had the most ups and downs. Last summer she started by having gastro problems, trouble eating, and feeling extreme nausea- all of the time. She still has this issue but all of her gastro tests came back as normal. She has also had some neurological issues with buzzing in her head (imagine a lawnmower in your head), tinnitus, migraines, night terrors, and a type of paralysis that comes with her allergic attacks. The allergic attacks range from passing out when she smells, touches, or eats something (the list of things in this list is ever growing and we never know what new thing will cause it to happen). She has also reacted by having mild anaphylaxis (which at any time could go to full blown) and the paralysis I mentioned which will last from 30 minutes to an hour. We have seen many doctors about these issues. This week we are seeing our second neurologist and we are traveling to Jackson to see our third allergist. Many doctors will look at the symptom list and either tell you it’s not their field, they don’t recognize it, or the really wonderful ones (note sarcasm) will tell you it’s all in your head- no pun intended. She is also going to be seeing an endocrinologist and cardiologist in the near future. 

Rachel has seen huge improvements in the last 9 months. In October of 2015 we bought her a wheelchair because she was gradually getting weaker and by January of 2016 she couldn’t walk more than a few steps without collapsing. Part of this is due to POTS (Postural Orthostatic Tachycardia Syndrome), and part of it has a neurologic component that we haven’t pinned down yet. The neurologist initially thought she had cataplexy (part of narcolepsy) but the sleep study didn’t show that. We go back in a few weeks to see what we can determine there. She also began having a lot of neck pain last summer and began using a neck brace. In August she began PT and they helped her a great deal. By the end of it she was able to walk around with the aid of a walker. Then her aunt and uncle gave her a treadmill which helped her endurance and by Oct she was walking in a store for the first time unaided. Now she only uses the chair very rarely on a really bad pain/weakness day and she hardly ever needs the neck brace. Rachel is also having some issues that seem similar to Caroline’s allergy issues (not the passing out though) so we have been using some antihistamines with her and they seem to be helping.

Hannah has many of the same issues that Rachel and Caroline experience but sadly can take little medicine to alleviate the issues. Back in the fall the doctor put her on Claritin to try to help the issues and after taking one pill (it was gluten free) it had her in bed barely able to function for 2 weeks. Thankfully she is able to take Gabapentin for her fibro which is really helping. She has started to take some vitamins that seem to be helping, but she has to add them in very slowly. It can take two weeks to get her up to a full dose. She has to start by holding the pill, then she moves on to tasting a little and gradually increases until she is able to take the pill. We have found that by going this slowly we can often find something that causes her a reaction. Though that didn’t work with the Claritin. She is also able to take BC when she has pain (most days) and we are very thankful she is able to tolerate it. 

I was able to go to the doctor in November and was also diagnosed with Fibromyalgia. I suspected that I had it for years, but back when it first flared up there wasn’t really anything doctors were doing for it and it seemed manageable, so I didn’t worry about it. The doctor started me on Gabapentin as well but unfortunately I don’t respond as well as the girls do to it. For me it makes me really tired and run down feeling. I have heard from others that it causes them severe neurological issues. I will go back in a few weeks and will talk to him about some other alternatives. The day after Christmas was a very sad day for us because my mother died. She had been in declining health for 2 1/2 years. It was a very sad time, but it was good to be able to re-connect with family we hadn’t seen in so very long.

Here are some stats from the last 9 months:
Caroline: 
ER visits: 4

Hospital admissions: 1

MRIs: 2

Major Tests: 6- colonoscopy, endoscopy, swallow study, gastric emptying, gall bladder function (2) 

Rachel:

MRIs: 2

Major Tests: 2- sleep study, nerve conduction

Hannah:

ER visits: 1

Every time they go to the doctor there is usually some type of bloodwork to be done, so we wouldn’t really count that as unusual. 

This brings you up to date on our life and the wild roller coaster ride that it is. We have been truly blessed through these trying times with strengthening love for one another and seeing how God sustains us even in the most difficult of times. This slideshow is a small glimpse into our life over the last 9 or so months. I’d love to hear from you, so please leave a comment and let me know who you are. If you have any questions, please feel free to ask and I will answer them to the best of my ability.

Blessings! 

Please Don’t Pray for God to Heal Me

I know I haven’t written in a while and my next several blog posts will give you a fuller picture as to why I haven’t. Before I get into why I don’t want you to pray for God to heal me, I want to give you a snapshot of my life at this very moment. If you are unaware Hannah, Rachel, Caroline and I all suffer with chronic Lyme and for the last 3 years Sarah’s has been recovering from a breakdown (read about that here). It’s 11:43pm, I’m sitting at my desk with most of my joints hurting in addition to an unexplained pain in my lower back that is shooting down my leg with no end in sight. I have been suffering from much more frequent Lyme attacks and many nights am unable to get to sleep until 6am because of muscle spasms, Sarah, or both. If Sarah is asleep before 3am I will be happy. Now, waiting for her to get to sleep doesn’t consist of just sitting back chilling, it is a constant battle to get her to stop screaming- and I mean screaming- blood curdling screams. The other night, she never went to sleep. I finally tapped out at 7am and Hannah took over for me. Hannah is battling extreme fatigue, muscle weakness, brain fog, confusion, difficulty communicating, and exhaustion. Rachel has been dealing with atonic seizures, general overall weakness, brain fog, and exhaustion.  Caroline has been having migraines and has hardly left her bed for two weeks. She has many of the same Lyme symptoms as Hannah as well as some others. The other day we went to a new doctor to have her checked for POTS and EDS. The doctor found an arrhythmia and did an EKG at that time. They have also run blood work and she will be going in for an echo-cardiogram and CT.   All 3 of the girls are pretty much home-bound. They each haven’t left the house more than a couple of times for anything other than chiropractor visits since Thanksgiving. 

I’m not listing all of this for sympathy, but to put the following in context for you. As of late the girls and I have had many conversations about where God has us. Due to a conversation one of the girls had with someone I have really been thinking about this. Over the past almost 5 years we have had a lot of conversations with people about our illness. Actually, it’s been longer than that. For many years before we knew what was going on they had issues and symptoms that kept them at home most of the time. 

We have heard many different comments from people over the years. Some meant to encourage, some were veiled criticism, and some were just plain unkind. Here are a few of them. 

“I think the girls just have their schedules switched around like a baby’s. If you flip it, everything will be fine.” — Referring to the girls insomnia

“I think we should all want to be at church so that we can fellowship with other believers.” — from an elder’s wife when the girls were too sick to attend for months

“There must be sin in your life, if you repent they will get well.” This comment has been made by everyone from pastor to layperson to Gene and I as well as the girls. 

“You just need to eat this/use this herb/oil/supplement/routine.” This is something often said to us by people who haven’t really taken the time to understand what is going on and who are offering us a cure all. We do have people that know what’s going on that make good/informed recommendations and are helpful.

“They don’t look sick.” or “I saw a picture of them on FB and they looked like they felt fine.” They don’t realize that because of whatever outing they were on in that picture they could be in bed for up to a week or more.

“I saw that they did _____ why weren’t they up for ______.”

“God doesn’t intend for us to be sick, if we’re doing things right, we should have good health.”

Many of these comments are meant with good intentions. They are often borne out of a lack of understanding of our circumstance and of scripture. The reality is, it’s easier for people to lay blame rather than face the reality that God doesn’t promise us an easy life. If we look at the life of our friend Job, we will see this to be true (he’s become a very good friend of mine over the last few years. If he’s not your’s, you really need to get to know and understand him). God called Job “blameless and upright”. All of the tragedy that befell him wasn’t due to his sin, though his friends said it must be (sound familiar?). Job never cursed God though people told him he should. He suffered, he agonized, he didn’t understand, he felt overwhelmed. I have felt all of those things many times over- on an almost daily basis. Yet in all of the despair, he knew God was there and in control.

The thing is, God didn’t promise me happiness, he promised me joy in Him. He didn’t say I wouldn’t have trials- He said I would and that they would bring about fruit in my life and work together for my good. He said I would be weak, but that I could find strength in Him. He said I would despair to the point of not knowing how to pray- but that the Spirit would pray for me. He never said that He wouldn’t give me more than I could handle- He will never give me more than HE can handle. 

You may be asking yourself, “Why don’t you want me to pray for your healing?” Because I want God’s perfect will for my life, as do Hannah, Rachel, and Caroline. We recognize that God has allowed this in our life for a reason- to bring glory to Him. To think otherwise would imply that God is not in control and He is. He is in control of every molecule and atom in this universe. Nothing escapes His notice, so therefore, He must have allowed this in our lives. Does that mean we sit back and do nothing? No. We treat our illnesses as best we can, but trust God for the outcome. 

Many believe that God’s main purpose is to heap blessings upon us. It’s not. Our purpose is to glorify God in all that we do and say. If I am spending my days and prayer time saying, “God, please heal me- take this away.” I’m not saying,  “God, show me your will in this and how I can best serve you through it.” To be honest, as of late my prayer has been more along the lines of, “God, I don’t know how to bear this. I am overwhelmed, exhausted and hurting. I can’t even focus to read your word or pray. Please help me! Give me the strength I need to take care of my girls. Give me the wisdom I need to help them! Forgive me where I fail you and let my fatigue and feelings of being pressed down and spent cause me to be unkind, selfish, and self-pitying.” 

So, how can you pray for us and others in similar circumstances? We need prayers in so many areas. 

You can pray for: 
                Strength, Wisdom, Sleep, Encouragement, Seeking His Will, Being Accepting of His Will, Contentment, Compassion, Patience, Joy, Peace, and so many more Godly traits. 

Every trial that has come into my life is for a purpose. I don’t pretend to understand it. And please don’t think I am above total despair- I’m not (just keepin’ it real here). I can’t count the times I have asked God to deliver me from this. To deliver my girls- as a mom it rips my heart out to not be able to help them. But God has taught me so much. I think I love them- but His love for them greatly surpasses what I can even imagine. He’s got this! I just need to be reminded of it sometimes. 

This song is our hymn of the month at church. God knew it was exactly what I needed. I hope that you will be blessed by it as well. 

 

Looking Back- 2014

This last year has been one of changes and growth for our family. It started out with our family being in a very hard place. We had been dealing with Sarah’s breakdown for 9 months and it was taking a toll on us all. A year later we are still dealing with it, but we are in a much better place spiritually and emotionally.

In 2014 we confirmed what I had  suspected for years, Sarah is autistic. It plays a great role in her breakdown and inability to handle the great rejection that was placed upon her.  We have learned so much in the last year about how diet can help or hinder her autism. Sarah now eats gluten-free, grain-free, dairy-free, egg-free and low sugar foods. She also avoids artificial preservatives, colorings and additives. This has put us on a huge learning curve as to how diet, nutrition and medications affect her.We found out that some foods are like a drug to Sarah and she is addicted to them just like an addict is to drugs. We also found out the hard way how something as simple as rice can send her to a place you don’t want to go.  Sarah has been off of her seizure meds for over a year now and hasn’t had a single breakthrough seizure. She used to have them whenever she didn’t sleep enough, but she has had some nights with no sleep and still no seizures. We are working on getting her on a decent sleep schedule which hopefully will allow me to get to sleep before 4:30am (sometimes it’s 10am).  

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Gene has been working 10 hrs a day (before dawn to late afternoon) 7 days a week since July only having a couple of days off during that time until last week at Christmas. When he did have a day off he was on the road to Louisiana (more on that in a bit). Hannah, Rachel & Caroline have been such a blessing to me during this time. I couldn’t have survived if it wasn’t for them and I wouldn’t have gotten any sleep. Thankfully, when I can’t stay awake any more they can usually take over for me. Though there were several days where I only had an hour of sleep a day for several days in a row. Thankfully we seem to be past that and boy am I thankful. 

From August until October things with Sarah were off the charts crazy (that’s when I got little to no sleep) but things have evened off greatly. Sarah is much more cooperative and has improved greatly since then. We still have a few days of craziness when her hormones flair, but she is much better than during those 3 months. 

Sarah is improving in obedience and awareness of others, though there is still much work to be done. We are so thankful for what the Lord has shown us in this area. A year ago I wanted the “old Sarah” back. This year I am much more realistic about it (more on what the Lord has taught me in a subsequent post). Now she is the new and in some ways improved Sarah. I would say she is at about 75% of where she was. I think it will probably be harder for her to trust others in the future. It’s hard for anyone to learn to trust again after being hurt in such a way. 

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I can see a great deal of spiritual growth in the girls this last year. They have been my right hand and my left. They have encouraged me when I am discouraged and helped me greatly when Gene is working. They are each battling Lyme and are at different stages of treatment. Hannah and Rachel are both seeing progress with their treatment. Caroline will be starting back on hers after the first of the year.

The last half of the year has been prepping for a move back to the town in Louisiana where Gene and I grew up. We hope to be moving back in early  spring, Lord willing. Gene has already made a couple of trips up there with boxes and will make a couple of more before the big move. Last Sept it seemed like spring would take forever to get here, but now that it’s a mere 12 weeks away, it seems awfully close and there is just so much to do. 

We’re ending our year on a very special day as we do every year.Today Gene and I will be celebrating our 31st wedding anniversary. I am so thankful to be married to the man I am! He is above gracious and understanding with me. He has been a rock for me during these difficult times and I am so blessed to have him here to help me. 

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As our year wraps up I look back and thank the Lord for every day in it. He has taught us to rely on Him, to rest in Him, and to trust in His faithfulness (I will share more on that in a following post). We have been blessed beyond measure and the Lord has given us what we have needed moment by moment. I pray that this new year will find you seeking the One from whom all blessings flow. 

 

 

 If you’d like to read more about what’s been going on with Sarah, this link will give you all of the articles I have written on her.  

A Break in the Storm

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We are rejoicing that there is a break in the storm that has been in our lives for the last year! The Lord has been so faithful! I don’t want to give the impression that He is faithful because the storm is breaking, He was faithful when the storm was at it’s worst. He was there to calm the stormy seas that were about to topple us, not by removing the storm, but by helping us through it.

Sarah has been on the SCD diet for almost a month now and she is showing great signs of improvement. Since I first wrote about putting her on the diet I have done more research and made further changes. One of the things we have eliminated is all dairy. Apparently dairy can work like a narcotic on the brain of an autistic child. I can believe it. Since we have taken her off of cheese she has behaved like an addict about it. We finally had to duct tape the cheese bin shut so that she would not be able to steal it before we could get to her. In the last few days we have had to remove eggs as well. We were suspecting that they were causing some issues and I did some research on them and found out that many who are negatively affected by dairy and gluten are also affected by eggs. This article was very interesting on the subject.

In the last week it is as if a fog has lifted from her brain. She is alert and you can see clarity when you look into her eyes. She will tell you what she wants and answer questions (sometimes). She is much more attentive and is paying attention to things. She has become interested in her surroundings and is actually focusing on movies, coloring and conversations. For the past year she would just sit stimming for most of the day seemingly staring into space. We still have a lot to overcome. If you ask her what she wants, needs or is upset about her first response will be, “I don’t know”. If she initiates it though, she has very precise desires. I found that out on a recent shopping trip. Her favorite color is yellow and she wanted a yellow hand towel to match her bath towel. I was fine with that, but then she started getting towels of every color of the rainbow to put in the cart. It took everything I had and a few tears on her part, to get out of there with only 2 towels.

We want to thank all of you who have been praying for her over the last year. It means more to us than you can know. We still covet your prayers as we now have to go through the stage of re-establishing boundaries and getting her on a schedule and getting some semblance of normalcy in our life. I’m sure there will be times of regression, they are to be expected. Today I feel more confident in her prognosis than I have all year. We are so thankful for the Lord’s provision and direction in all of this.

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