A (word) picture to describe my chronic illness

Living with a chronic, invisible illness is awful. This is compounded by the fact that I usually don't look sick. The following paragraphs are from my "book" about living with chronic illness. (It's more of a memoir, really). I wanted to share this picture of disability. This is addressed mostly to people who don't live with a person like me, and they don't really know what it means to have a chronic illness. This is written in past tense, as though I no longer deal with this struggle. But, my autoimmune issues flare up often and I have bad days. I still struggle.

           I want to paint a picture for you to understand what it is like to live with chronic illness. I will use my husband as an example.
            My husband, Paul, worked for UPS for several years. For quite a while, he was in the position of pre-loader. He put the packages into the trucks. Sometimes he had to load as many as four trucks at one time. The work was fast-paced as well as physically and mentally challenging. It was like a big puzzle that had to be put together every night. When all the boxes were properly loaded he was tired, but felt satisfied in a job well done.
          Then, a horrible thing happened. Paul's discs in his back became herniated. He could no longer do his job with the same vigor. And, there was a period of time that he had to take three months off while his back healed. During that time, Paul struggled with feelings of uselessness. He wanted to be able to get out and work.
           This kind of situation is hard for a man to deal with. Men were made to work. But, it could have been worse . . .
           What if instead of just being stuck in his bed every day (which was hard enough for a hard-working man like Paul) he had to lay on a couch at the delivery center and see boxes and boxes piling up outside of his package cars? What if he had to watch while someone else tried to do his job, but they were just not doing it as well as he could have? Worse yet, what if he had to watch a driver pull away from the bay with the work left undone and boxes strewn all over the floor?
          That was my life (in 2014, when I was at my worst). I knew my job description. Mother: makes meals, tickles children, plays catch, washes laundry, does the dishes, makes child do homework (or in my case teaches school), kisses boo boos, keeps the house looking nice. But, I was unable to fulfill my role as mother. Sadly, I had to watch as jobs went undone, finished half-way, or completed once again by my eldest daughter. I had to live in my mess . . . forever seeing that I couldn't do anything to help. I felt useless. I felt like a failure. There was no where to turn my eyes to avoid seeing reminders of my sickness.
          That's one picture of disability.
          Add to that first picture now (Paul, on the imaginary couch at work, watching the work get done by someone else to a lesser standard than he could have done it) – What if he had gotten up and forced himself to work? What if he had a day where he had less pain and decided, “I would like to work today”? How would he have felt the next day? What would have been the long-term repercussions? One good day of work would be followed by many days in worse pain. This is the reality of what many chronically ill people suffer with day to day. The physical pain is one thing. The mental anguish is another.
  

Chronically Sick Homeschool Mama: Makes Breakfast

source - wikicommons; Public Domain

I want to write useful information on this blog… both spiritually and practically useful. So, I am going to write some specific posts about what it looks like to be a homeschool mama when you are sick… and I mean really sick. (Though, these lessons could be applied to times of morning sickness as well as the chronic illness that I have suffered from.) Beginning with - HOW to make/manage breakfast when you are a sick homeschool mama.

(The following post was originally written in November 2013. I was sick then, but I became far more disabled before my remission in Spring 2014).

Right now, I am in a season of watching my big girl (age 11) make breakfast for our tribe. But, for years I suffered the horrible daily task of facing a hungry mob of kids age 4 and under who really could not do much for themselves. And, my list excludes store bought cereal because my kids respond so violently to refined sugar and grains. But, if cereal works for your family – by all means, utilize every short cut you can!

(Regarding food sensitivities and childrens’ behavior. It certainly appears, from scholarly research and my own life experience, that some food sensitivities cause behavioral issues with some children. I encourage you to keep a food journal and write down the food you and the kiddoes eat and your reactions to them. In my home, we found that certain grains make one of my boys present with all the appearances of ADHD. Being a sick mama with sick kiddoes is a whole ‘nother blog post… But, suffice it to say, do what you can within reason to keep your kiddoes well as much as is in your power.)

-         Pray and ask the Lord to show you what to make your kids for breakfast. Seriously. God wants you to involve Him in your life. He will answer you if you take time to ask and listen.

-         Plain yogurt with drizzle of honey or healthy jelly. Add fresh fruit on the side.

-         Oatmeal is your best friend. You (or your husband) can pre-make it the night before in a baked oatmeal recipe. You can throw together oatmeal “slop” even on your worst morning. (By slop, I mean plain old boring oatmeal. Use two cups of water to every one cup of rolled oats. Add a pinch of salt to the mix and cook on low.) For mama and six kids I make 4 cups of oatmeal with 8 cups water. When there were only a few kiddoes and they were smaller, I got by with two cups of oats. Add raisins, nuts, seeds, real maple syrup, or all kinds of goodies to spruce it up.

-         Eggs are a good go-to breakfast as well. You can scramble them fairly easily. And, really, cooking up a quiche is not all that more intensive than scrambling eggs. In fact, I think I prefer the quiche. Whisk the eggs, dump ‘em in the pie plate and cook ‘em. I cannot always add veggies, because most days these past few years I cannot cut vegetables, because my hand/forearm muscles do not function well. Buy pre-shredded cheese and add 1-2 cups in with the eggs. Or, if you feel like you have the strength to clean up the mess, have your kids shred the cheese… but I do not exactly “recommend” this.

-         Smoothies. Buy bananas on sale and freeze them with the peels off in a freezer bag. Buy frozen fruit. You can use store bought yogurt, store bought kefir, or pure fruit juices to mix in with the frozen fruit to make a smoothie. (If you are a truly sick mama, this is not the season of your life to try to make your own yogurt or kefir. Sure it might be “easy.” But, do you really need one more iron in the fire right now? Will the benefits or making your own truly outweigh the cost to your body and mind to make yourself feel like you need to make your own?)

-         If you have a condition that goes into “remission,” or you have some good months, consider freezer cooking during your good months. Just don’t overdo it, Mama! I know the temptation… you have one good day and you overdo it so much that you are laid up for the next three days… don’t do it, Friend, unless you have several consecutive MONTHS of health and wellness. Muffins, breads, and waffles have been a great freezer breakfast for my family.

-         During times when I felt less sick, I would make “hash” with sausage, store bought “southern style” potatoes, and scrambled eggs. 

-     Take a walk through the freezer section at your local grocery store. Those pre-made sandwiches look scrumptious! I never bought any, because it was cost prohibitive. But, it might work for some incomes.

-         Who says breakfast has to be “breakfast” foods?! Give the kids (preservative free) lunch meat and cheese roll-ups with a can of fruit. Heat up rice and beans (or any leftovers!) from last night’s dinner.

-         Jesus ate fish for breakfast (at least on one occasion). Cook up some salmon in the skillet. (This is one of our regular breakfasts nowadays).

-         If you have the money, consider buying healthy granola bars. Or, if you know you feel better in the afternoon than in the morning, make your own bars to eat tomorrow morning.

-         Natural peanut butter or almond butter and healthy jelly on healthy bread/toast. There were months on end that I can remember giving the kids peanut butter on Nature’s Own whole wheat bagels. The children started making this for themselves as early as age 4. Add a banana or an apple and it seems like a well-balanced meal to me! There were a few years the children and I nearly lived on frozen waffles and peanut butter for breakfast. It wasn’t ideal… but I had to do what I had to do.

I think one of the most important starting points is get the preconceived notions about “what a good mom gives her kids for breakfast” out of your head! You know your limits. No one else knows how you feel. You need to feed your children as well as you can with the resources you have (both financial and physical!). Ask the Lord to show you what you can and cannot do in terms of physical strength. Trust me, I speak from experience, the Lord would rather you feed the kids store bought cereal every day than wear yourself out by making an elaborate feast that will leave you depleted and open to the temptation to yell, curse, criticize, make mountains out of molehills, or whatever your vice is.

Don’t let yourself be bullied into making meals beyond your ability because you feel like it is what you are “supposed to” do! Too many moms are trying to live up to these expectations – most of which are unrealistic lies from the Enemy sent to destroy us.

What does the Lord say?

Better is a dry morsel and quietness with it
Than a house full of feasting with strife. Prov 17:1 (NASB77)

If you are hearing thoughts of condemnation because you did not make a “complete, balanced” breakfast that compares to a magazine cover, that is NOT the voice/thoughts of God!

There is therefore now no condemnation for those who are in Christ Jesus. Romans 8:1 (NASB77)

God’s primary concern is not what specific foods you give your children for breakfast, but rather your attitude while you serve them. Do you love your children? There are some mamas who put themselves under great strain trying to create the perfect diet for their kids, but in reality, doughnuts served with love and a smile would be healthier for your kids than eggs and turkey sausage served with a grimace and a side of discontentment and grumbling.

I hope you hear my heart on this. I can see times in the last ten years where I did very well. And, I see times where I was feasting with strife. I just want to caution and encourage other sick mamas from the trenches. I’ve been there. I am there now. But, fortunately, we made it through the days of having 4 kids age 5 and under. And, they all lived to tell about it. None of my kids lose sleep at night having nightmares about the days they used to eat frozen store bought waffles every morning for breakfast. Seriously. BUT, there have been seasons where my SuperMom gene was going strong and I tried to make elaborate whole food feasts that ended with kids and mama all screaming and/or crying. We do remember those days. Thank God that even those memories, when viewed through the proper lenses, do not bring condemnation. (Or, if they do, it is not from the Lord, and we can tell Condemnation to “take a hike.”) Your kids will remember that you served them as well as you can in your sickness. That is enough.

One last thought – your children are following your example, whether you want them to or not. Do you want your children to serve breakfast to their future families in the same manner that you do? There is time to change. Start today. Ask the Lord for wisdom and knowledge. He will hear you. He will answer you.

Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing. But if any of you lacks wisdom, let him ask of God, who gives to all men generously and without reproach, and it will be given to him. James 1:2-5 (NASB77)

God in the Dessert - A look back at 2013

We all daydream of mountain top experiences in our lives. Few of us like the moments in the valley or the dessert. But, I have been meditating on life in the wilderness for quite a while now.

For our family, 2013 was a year spent wandering in the wilderness. God ALWAYS provided for the things that we truly needed. Sometimes we had to wait until the eleventh hour. Sometimes God would not give us what we wanted, because He knew that we did not NEED it. But, God never left us.

When the Israelites were wandering in the dessert God provided their daily bread one day at a time. I have come to believe that this may be the single greatest sign that a person is truly in a spiritual dessert… because they literally have to pray “give us this day our daily bread.” (Daily bread could be literal food, physical strength, emotional stability, etc.) We humans don’t do well with one-day-at-a-time philosophies. I want to know that my financial future is secure. We want retirement plans, life insurance, secure jobs, etc. And, there is nothing wrong with good planning! God gave us our brains to plan for our future.

But, some times we experience situations completely outside of our control. In our case it was Paul’s herniated discs from January to March. Then, a few months of work. Then, another type of hernia from May to July. Back to work for a few weeks in August. Then, WHAM!, someone ran into Paul’s UPS truck and Paul was fired for being in a wreck that wasn’t his fault. Back to work in October and running strong till the end of the year resulted in a total of 32 weeks working and 20 weeks without work and without pay.

Talk about a dessert.

I hated it. I kicked against it. I refused to learn from it. I continually prayed against it. I wanted it over. I don’t ever want to go back.

But, yet…

In the dessert is where our faith is truly tested and refined. God loves our family so much that He wants us to be closer to Him. And, as I read the Old Testament (in particular) I see God saying to the Israelites that they will draw near to Him in the wilderness. They will cling to Him in the dessert. They will run to Him when under attack from the enemy. But, when they have plenty of food and money… then, they seem to allow distance to come between them and their Creator. (See Deut. 6)

We all do it.

I was crying the other day. Paul was with me while I was emoting… and he had some wise responses. He said, “What’s so great about the mountain? We learn in the dessert. We don’t learn on the mountain. On the mountain we say ‘Lord, should I build you three tents?’” (See Luke 9, especially verse 33) I see his point. Paul is right.

God loves to give us blessings. But, His blessings are not always in the form of more money and better health. There are times that He sees that we will grow from a period of sifting. Satan asks the Lord for permission to sift His people. He asked for permission to bring trouble to Job. These troubles are allowed by the Lord because blessings come in many forms.

Our family prays nightly that we will be the family God has meant us to be. It is quite possible that we need to go through some rough times to refine us and purify us. I cry out daily, “I want what You want for me life.” If you are going to pray that prayer…well, you need to be prepared for God to answer. And, it may not look like what you expect. Maybe God does want to give you riches and health. But, maybe He wants you to taste a bit of pain to be better acquainted with the sufferings of Jesus Christ. (see Phil 3:7-10)

Some of my dearest friends would view this line of thinking as heresy. But, Jesus tells us that in this world we will have troubles. He does not promise that we will be free from trouble! (see John 16:25-33) He promises that He will be with us when the trouble comes.

So, I write this on the edge of the dessert gazing towards the fertile crescent. It’s so close that I can smell the water and green grass. I acknowledge that I would rather be in the refreshing green pastures than in this arid climate, but I want to recollect (in case I lose sight of the Lord when we enter a time of abundance and plenty) that the time in the dessert was/is well-spent.

I don’t ask the Lord to take me back to the wilderness. But, if He sees that it is necessary for our family to spend more time there – I will try to praise Him in the midst of that situation, because God is still God. He is the One who gives us the daily manna in the dessert. He will never leave us or forsake us. And, I trust that the Lord will do what is necessary to fulfill His purposes for my life. (Psalm 57:2)

NOTE: I wrote this thinking that our time in the dessert was nearing an end. Paul was working full time at UPS (finally) and all would be well. So I thought. But, my fibromyalgia reached an all time low. In Feb-April of 2014, I could not take care of my own basic needs. Paul left his job at UPS to care for me and teach the children. At the time, it seemed like the only solution. The months that followed were far worse than the agonies we had experienced in 2013. So, perhaps, we needed more time in the wilderness to draw near to God. By American standards, we have not yet had a time of "abundance and plenty," but our table has food on it and we have vehicles that work. I am grateful!  

Chronically Sick Homeschool Mama (reposted)

Reposted 07-22-2014 (Originally written November 9, 2013, during a health trial that got much worse...)

After getting a decent amount of sleep I feel a little more equal to the task of writing about what is going on in our home these days.

I am a sick mama. I’ve been trying to fight it. I’ve been trying to disguise it. I’ve been trying to outright deny it (to myself). But, the truth is, I am one sick mama.

The symptoms for which we recently expected a pituitary gland tumor were these: both ears ringing. Loudly. Since October 8^th. Lactating, though it has been more than half a year since I nursed the baby. Drastic change in appetite. Terrible weight gain. Forgetfulness. Headaches. And more.

As I noted yesterday, the MRI showed absolutely no problems with my brain. This is good news, but not necessarily easy news. Hear me out… I do NOT want to have a tumor! I do not want cancer, or MS. I am NOT saying that it would be easier to be sick from any of those awful causes! But, for a few days I felt like (for the first time in eight or so years) I was justified in my sickness. You cannot possibly understand unless you too have an invisible illness like chronic fatigue, or fibromyalgia, or hypothyroid, or some other undiagnosed sickness.

For years I have battled in my own mind how to be a mama of all these kiddoes and homeschool while I am so very sick. And, yet, no one really knows how sick I am. I do not necessarily “hide it.” I flatter myself to think that I am one of the most authentic people you will ever meet. (Let that sentence in and of itself tell you of my authenticity *winks*)

Yet… I am a recovering SuperMom. I am one of that class of homeschool mamas that wants to represent the homeschool movement (and the Lord!) so well that I push myself beyond my breaking point each and every day. My body would say “sleep, rest,” and my mind would say “but the dishes aren’t done!” As though the dishes are more important than my health. To be honest, it has been as though for the last eight or so years of homeschooling, I carry a host of condemning voices with me throughout my day.

These voices (or rather ideas/notions) enslaved me as only the most brutal task master could ever do. I was/am driven to have a perfectly clean house. Driven to have the perfect diet. Driven to be the perfect mom and have the perfect kids. And, usually these condemning voices/notions came at me in the form of believers… not unbelievers. Comparing myself to the blogger mom with ten kids who appears perfect. Comparing myself to the books I read that locked me into this cage in the first place. Seeing myself (I supposed) through the eyes of Christians who choose not to homeschool and (I supposed) were always pointing fingers at me. On and on goes the list.

So, yes, I am unwell… But, I don’t think the biggest problem I am currently facing is my thyroid scores being the worst my doctor has ever seen… or my chronic vitamin D deficiency… or anemia… or adrenal fatigue.

Honestly, the biggest sickness is the one in my heart/spirit. Yes, I am a very sick woman – physically. But, there is an even bigger issue that I need to be healed from… the disease of comparison and condemnation.

Because, you see, I would feel justified being sick if I had a diagnosis of a brain tumor. I would have finally – after all these years – given myself permission to slow down. To be sick. To take time to heal. But, there is a place in my mind that is still wanting to be SuperMom. “What?!,” it says, “And admit you aren’t the perfect mom?! That you are sick?”

This will not make sense to you unless you have been there. I am writing this post to those of you who have been there… who are there.

I am done. I am done trying to be SuperMom. I REPENT of the sin of PRIDE!

I awoke from a dream this morning that I was writing for a newspaper. I was a featured writer on page two. I was brainstorming ideas what I would write about. My list was all ideas of what it really looks like to be a homeschool family… and to be a sick homeschool mama, at that. The Lord, I believe, was showing me that I have to be a herald for the truth. (Of course I am a herald for THE Truth, Jesus Christ, first and foremost!) But, I need to be a voice that is NOT adding further condemnation to mamas who are already burdened.

Lord willing, I will be a voice of one who tells you how to un-strap those burdens off your backs as I learn how to cast aside my own.

Lord willing, this blog will be better used than ever before (by me, the primary author) to exalt the Lord and help us Christian families to see ourselves as the Lord sees us.

The Father loves us. He sent Jesus to die for us. He wants to strengthen us for the journey one day at a time. We are His flock of chicks, He is the Mama Hen who gathers us under His wings. We are all brothers and sisters, as well as fellow soldiers, who need to link arms and hold each other up through the battles of this life.

There is something seriously wrong with a Christian culture that leads to mamas who feel like they can’t even be sick! And, it is not all “in my head.” I have had real life people tell me that I can keep going and do all the things that [she] thinks I was supposed to be. (You know, homeschool mama - teach three languages, teach three musical instruments, and so forth…) I have had others who told me that I am not sick at all… I just need to “overcome” and press on.

Sick Mamas, we WILL overcome! But, overcoming might mean that in your sickness you learn to tame your tongue, you learn to let yourself be sick, you learn to be patient and content in all circumstances while the Lord is at work to conform you into the image of His Son while you participate in a small sampling of His sufferings. You WILL overcome. We WILL be more than conquerors. But, that might mean that you will remain in your sickness a bit longer while the Lord does His Perfect Work in your life.

For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. Romans 8:18 (NKJV)

Brain Update

Regarding the MRI that I mentioned in my last post.

My MRI was unremarkable. There was no brain tumor. No cancer. No MS. Nothing.

This is a good report. But we still don't really know what is wrong with me.

I'll try to write more on a day when I'm not so tired and overwhelmed.

Health Update - Bethany's Brain

Last week I went to a new doctor to see if I might get a new perspective on some of my health issues. My hypothyroid condition has been particularly out of control lately, and we are trying to put all the pieces of my health puzzle together. Also, we recently found out through blood work that not only was my thyroid score literally off-the-charts hypothyroid, but I am still terribly vitamin D deficient as well. (My end of Summer vitamin D score was far worse than my January mid-winter score last year!). So, I had some concerns about my health. Also, I am no longer taking NatureThroid as it turns out I am "sensitive" to pork and I felt better after discontinuing the medicine than I felt the nine months I was on it.

Meanwhile, I was seeing many of my health symptoms spiraling out of control. Paul said that I am in the worst health he has ever seen in me... this includes my bouts of disability... so, that says a lot... I am  NOT currently disabled. But, I see some patterns that, if not nipped in the bud, could potentially go that direction. My hands are not able to hold a pen most days. (I am able to type easily.) But, it hurts to play piano. I cannot comfortably lift up my arms to comb or arrange my hair... etc.

So, I went to a new doctor. And, she picked up on a number of symptoms that she thought correlated and took a blood test (among others) to check my prolactin level. I asked her what she was checking for and she said "pituitary gland tumor." I did not freak out. I actually thought, "yeah... that would certainly explain some things..."

Then, Monday we got the results of the blood work. My prolactin is quite elevated and I need to have an MRI done tomorrow to check for a tumor in my pituitary gland. I spoke to my naturopath today as well. And, he also now suspects to see a prolactinoma on the imagining tomorrow. My naturopath was very encouraging, telling me that he has treated this condition successfully before. In fact, he said that he has seen great results simply from eliminating gluten from the diet. (Yes, I was gluten free for a while, but we recently reintroduced grains in abundance as an attempt to cut back grocery expenses.) My doctor did not say that prolactinoma is caused by gluten sensitivity, but he did strongly state that gluten can/does exacerbate the condition. So, it looks like I will be going GF again. (At the very least)

Neither of my doctors expects that this tumor (which we expect to find) will be malignant. Pituitary gland tumors are generally benign. Neither does either doctor expect this health concern to be at all life threatening. And, to be honest, I never feared that. My anxieties were always more along the line of, "IF I have to ... THEN who would watch the kids/homeschool the kids/cook/clean/etc..." Rebecca is amazing! She is the momentum that keeps this family in motion right now (humanly speaking). She is stepping up as little mama in a big way! And, she is feeling the physical strain. She is quite tired.

I will let you know the results of the MRI as soon as I am able. I think at this point we would all be surprised if it is NOT a tumor... but you just never know. Last week a brain tumor was not even in my foggiest ideas for my future. Now, I am talking about it like it is a certainty. But, we do not know anything for sure yet, except that my prolactin score was high.

Now, knowing that these types of posts (on my blog) get more hits than anything else, I feel obligated to say that I HAVE PEACE, Friends! And, you can too! I can trust in the Lord no matter what is going on with my thyroid health, my vitamin D level, my pituitary gland tumor etc. I am clinging to several verses of Scripture throughout this ordeal and all the others of this past year. With my health and Paul's health. With Paul's job loss and everything else we have faced - we CAN and we DO have peace. We have moments of weakness, but we CAN have peace!

Here is a small sampling:

Romans 8:28 And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.
Romans 8:29 
For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers.

Psalms 57:1-2 Be merciful to me, O God, be merciful to me,
    for in you my soul takes refuge;
in the shadow of your wings I will take refuge,
    till the storms of destruction pass by.
² I cry out to God Most High,
    to God who fulfills his purpose for me.

Isaiah 26:3 You keep him in perfect peace
    whose mind is stayed on you,
    because he trusts in you.

God is fulfilling his purposes for my life. And one of His ultimate purposes is to conform me to the image of His Son. Whether you believe that God "allows" bad things to happen or whether He has "ordained" bad things to happen-- God WILL use all circumstances in my life for my good and for His glory. We can have peace.   

To God be the Glory.