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! 

Spoonie Update 7/27/16

I wanted to share what all has been happening with the girls and their health but haven’t had a lot of time to write. I made this video today on the way to Rachel’s Physical Therapy appointment. That’s about all of the time I have right now. If you have any questions, please leave a comment and I’ll get back to you as soon as I can. 

She doesn’t have a sticker!

For about the last year my week has consisted of taking us to the chiropractor twice a week. At first it was just Caroline, then we added Hannah, and in a surprise move to us all, Rachel decided to go. After the first of the year we added Sarah and myself. We are blessed with a chiropractor who is a Christian, who is kind, compassionate, and always looking for ways to help us. 

I know we have all had those Murphy’s law types of days and that’s how things were going for me today. Sarah’s shoes were lost, and things just kept happening that caused us to get out of the house 10 minutes later than we needed. Traffic went well and we were only 7 minutes late for our chiropractor appointment. At our chiropractor’s office that isn’t really a problem because it all evens out because of how he sees patients. He has a system reminiscent of an ice cream parlor. When you walk in the door you sign in, then you proceed to the waiting area and take a number and then wait your turn. When it’s your turn you go into the cubicle that has no door and he adjusts you. Afterwards you go and stand on a vibrating table thingy (I still don’t know it’s proper name) and then you’re done. Since this February the girls (Hannah, Rachel, and Caroline) have also been doing a Light and Sound therapy after their adjustments which takes about 20 minutes. So in all we are usually there from 1 hour to an hour and a half. 

That’s how things go on a good day. Today was not a good day. When we walk in the door the office manager informs me that we aren’t on the books for today. This puzzles me because just last week I set up repeating appointments so that I didn’t have to worry about it anymore. Apparently either the guy who set it up or the program has a glitch. We go ahead and get our number (we take one number for all of us because he sees us as a group and that’s what he told us to do) and take a seat. Mr. Murphy is visiting the chiropractor today as well. He has 2 of 4 employees out and is also covering for his partner who is out of town. Needless to say, things are taking a little longer than normal.

When it’s our turn we do what we always do and pile into the cubicle sans Rachel. She stays in her wheelchair right outside the doorway. If you are unaware, Rachel has had to use a wheelchair exclusively since February. Sarah pops up on the table first, always eager to get her adjustment. Then Caroline goes. In the last few months she has multiple sublexations and partial dislocations that he has to work on. Monday she had 9 ribs out. He works on her and she goes off to Light and Sound. Next it’s Rachel’s turn and I wheel her into the cubicle. She talks to him about what’s going on and then gets on the table. When she’s done getting an adjustment I wheel her back out and she waits nearby so that when I’m finished I can take her to Light and Sound. She has injured her left shoulder and has a possible torn rotator cuff which makes using her wheelchair difficult. 

While I’m laying on the table and he is adjusting my back I hear someone being very loud saying, “It’s none of your business!!” repeatedly. A look of confusion goes across my face and he tells me not to worry about it that he’s happy Caroline is angry with this man. I’m at a total loss. Thoughts are flying through my head and I can’t understand who she would be this angry at (I’ve never heard her this angry) and why. As I sit up so he can do another adjustment he tells me that a man said something about Rachel. Then it becomes clear. You can say anything to Caroline, but don’t mess with the girl’s family! 

By the time I get out of the cubicle Caroline is in the bathroom upset. Since the bathroom door is in the waiting room I restrain myself from knocking on the door to see if she’s OK. Instead I went to the desk to fix the appointment issue. When Caroline came out she looked as if she was ready to cry. I talked to her and got the rundown of what had happened. She had gone into the soundproof room for Light and Sound but her headphone battery was dead, so she came to the desk for another one. While waiting for the office manager to finish up with another patient she overheard this man and woman talking quite loudly (they were about 15 feet from her and about 10 from Rachel). At first they were complaining about how we only had one number. We aren’t worried about that because we’re only doing what the doctor told us. But then they moved onto Rachel. The man started saying that we didn’t have a handicap sticker on our van  (has he been stalking us or something?) and there were proper procedures to go through and since we didn’t have a sticker on our van, Rachel wasn’t really disabled and shouldn’t have a wheelchair. Because ya know, you aren’t disabled unless you have a sticker. Yes, he seriously said that loud enough for everyone there to hear it. The doctor told me he was happy that Caroline was giving him a piece of her mind because he does/says this type of thing to patients all of the time. 

After I talked to Caroline about what had happened I went over to the man and tapped him on the shoulder and asked to speak to him. Now at this point I didn’t know he had actually put his hands on her during their conversation. Apparently he thought he was playing “Little Bunny Foo Foo” and bopped her on the head. Not cool. Like I said, I didn’t know about this then; she was too upset and didn’t think to tell me. I’m calling that God’s providence! He lies repeatedly about what he said, changing his story every time. I tell him he owes my daughter an apology and he gives the best non-apology apology I’ve heard in a long time. He then tries to touch her again, and she promptly knocks his hand away and tells him not to touch her. After this we leave and go home. Rachel and Caroline were so stressed they couldn’t even do their Light and Sound treatment.

I don’t know about you, but when I see someone in a wheelchair the first thing I think about usually isn’t whether or not they have a sticker on their van. I don’t ask them to prove their disability to me. I don’t question whether or not I think they are disabled enough to have a sticker on their van. But apparently many people have nothing better to do than challenge people on their disability or hidden illness. I have a friend who has a sticker and has Lyme disease. Someone keyed her van for parking in a handicapped spot, with a sticker. We don’t have a sticker- yet. But we also don’t park in handicapped slots. Sometimes this causes us problems like trying to get Rachel back in the van because a car is parked too close to us. That’s not their fault, I don’t get angry at them, we just work out a solution so we can get her back in the van. 

I want to be clear that we don’t think confronting people is the right thing to do all of the time. But there are times it is necessary, this was one of those times. People act as if anger is always wrong, but it isn’t. Scripture says, “Be angry and sin not.” Eph 4:26 There are certain things we need to be angry about and bullying someone is one of those things. 

I know this is long, and thank you for sticking with me. There are so many crazy things happening in this world today. They are all really just a symptom of a lost and dying world. In our family we have a #1 rule- and it’s pretty simple- “Do unto others as you would have them do unto you.” That covers just about everything. Instead of judging whether that person is disabled enough, stop and think about the hidden things you may not see. There are a myriad of hidden illness out there. Show the same love, compassion, and empathy you would want someone to show you. And to quote another Bible verse, “encourage one another and build each other up”! I don’t think we can go wrong in doing either of these.

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.