Friday, May 4, 2012

The Journey and A Rough Landing

Once upon a time, I was as normal as an introverted, nerdy, book-loving, Jesus-following, formerly homeschooled, unpopular, unfashionable, walk-to-the-beat-of-her-own-drum kind of girl can be. I may have been a bit punier than other kids my age, but I would get sick and get well again. My habits and patterns were at least similar to those of everyone else I knew. I liked fun. I had a place in which I felt I fit somehow. I had dreams and hopes and no reason at all to think they may not come true.

Between Christmas and the New Year in 2004, I had my first immediate allergic reaction to a food. I had been allergic to dairy all my life, but not allergic enough to quit enjoying it. As I popped pistachios in my mouth while my family and I enjoyed a quiet evening on vacation in Branson, MO, my lips, mouth and Eustachian tubes began itching. I took some Benadryl and didn't think about this event again until 6 months later.

During the spring season of 2005, I was on a health kick, trying to eat sprouted grains, nuts, veggies, fruits and limit my sugar intake to a little honey and an occasional dessert (aka, I was eating healthier than I had ever eaten). Sitting in a night class at Louisiana Tech that met once a week through dinner time, I was eating a favorite snack of organic cashews when my tongue started to swell. My mother had been suffering from adult on-set food allergies for about a year at this point, and I had been carrying Benadryl with me as a safety precaution. I took two Benadryl, and was fine. I made a mental note to not eat anymore cashews.

A few months later, I began reacting to other tree nuts, including almonds. I stopped eating them. A few months later, I began reacting to soy products. So I avoided those, which is quite difficult to do if you are used to eating processed food like I was and like most of America is. If you think avoiding soy is as easy as staying out of Asian restaurants, just go read the nutrition facts on the packaging of your favorite snacks. At a friend's wedding in December 2005, I became very sick after her reception. It took me a few more months to realize the cause was the delicious cake I had consumed. By late spring 2006, I had cut almost all wheat out of my diet.

At this time, I also began suffering severely from seasonal allergies. My eyes burned and watered constantly, I couldn't see straight, I was sneezing, coughing and wheezing all the time, my head was swimming, I started having migraines and was depressed. In early June 2006, I made a horrible mistake--I went to an allergist for help. I'm not saying this is a mistake for everyone. It was just a mistake for me. I underwent skin testing for all common allergens. He chose not to test the foods to which I was already reacting to systemically. He discovered that I was allergic to grasses, pollens, molds and dust mites (surprise, surprise), and I began receiving shots weekly. After a couple of months, I began having severe local reactions to the shots. I would receive a shot, my arm would swell and hurt for days, and by the time I was normal again, I would have to get another shot. It didn't take long before I was having systemic reactions to them. I would almost weekly get my allergy shots, then get a follow up steroid shot. I was often put on oral steroids to boot. Twice, I had an anaphylactic reaction to my shots in the office. I once asked if this was normal. I was told that this doctor had patients who had to receive Epi every week with their shots. I didn't like the sound of that, and it wasn't long before I realized that my shots were making me worse. My asthma was worse. I had a new food allergy to corn. My seasonal allergies had not improved. I stopped seeing the doctor, and quit paying the man for making me sicker.

I continued carrying my Epi pen, Benadryl and inhaler. I continued taking my daily antihistamine, Singulair and nasal spray. I avoided wheat, tree nuts, soy, corn, dairy, active lawnmowers and moldy leaf piles. I learned how to eat well in spite of the numerous foods I had to avoid. Sometimes, it seemed that the severity of my allergies would recede, and I might be able to enjoy corn and dairy more often, but they would always advance again.

After Micah was born, I got worse. I had a little brush with death in June 2009, but thanks to 100mg of Benadryl, two Epi Pens, a husband who isn't afraid to drive fast and furiously and the questionable care of a local ER, I survived. If you are my friend on Facebook or if you've been reading for awhile, you know that things got hairy for me in January 2011 when I encountered teff flour, a gluten-free grain that may not have killed me, but made me wish I was dead more than once. Let's just say the encounter was . . . violent. That encounter left me with poor general health for the greater part of 2011. After teff, I swore off all grains minus rice and the occasional bag of popcorn and bowl of oatmeal.

If you read the blog series I posted in February, you know that I am now dangerously allergic to sulfa/sulfur/sulfites. Since then, my other food allergies have worsened drastically. I once could occasionally cheat with a few allergens without reaping any consequences. These days, corn is just as deadly as wheat, and dairy and oats are just not worth the trouble. My seasonal allergies are worse than they have ever been. I am chronically suffering from fatigue, asthma, dry, itchy eyes (I can no longer wear contacts), migraines, skin rashes, and hives.

 I began to suspect that my problems extended beyond mere food allergies well before this last Wednesday, but I received confirmation by Thursday (yesterday) morning. Wednesday night,  I had a severe allergic reaction to coconut, an extremely uncommon allergen. It made me very sick, but I decided not to use my Epi Pen. A breastfed infant makes that action complicated for several reasons. I grieved with real tears that night over my new food allergy. Not that I eat coconut every day, but it was just that one more thing, you know? I went to sleep with the scared little thought of, "Will I just eventually starve to death because I've become allergic to everything?"

Thursday morning began like every other morning, only I knew that I would be taking Sara to the doctor for an ear infection and would subsequently be taking care of a sick infant. I did feel strange and very itchy from my reaction the night before, but it wasn't until I was up walking around that I noticed something different. Pain. Pain in every joint and hot spot in my body. I had a horrible headache, neck pain, shoulder pain, upper back pain, lower back pain, elbow pain, wrist pain, hip pain, knee pain, ankle pain. I could feel pain in every joint in every finger, every toe. It hurt to hold a fork, chew my breakfast, and change Sara's diaper. And suddenly, I knew. For months, I had wondered, but now I was sure. My aunt has rheumatoid arthritis. My husband has Crohn's disease. I have friends with MS, lupus, IBS, etc. I know the common telltale signs.

My name is Melissa Keaster. I am not yet 28 years old, and I have an undiagnosed auto-immune disease that will be less than simple to treat. Until I get treatment, I will likely suffer every time I have an allergic reaction (which is often) and every time the weather changes (it's spring in Louisiana). I have a 21 pound, needy infant who constantly needs comfort from her own pains and illnesses. I have a 3 year old who desperately misses his fun-loving, carefree mommy who was once game for daily adventures. I have a husband who is suffering from food allergies for the first time in his life. He needs me at my best. My kids need me at my best. And I find that I am at my worst.

Yesterday was a day of tears and heartbreak, working through the day and praying it would end. It was a day of facing harsh realities and wondering why it was all necessary. However, I did not despair. My hope is not in my health.

I've just begun processing this new information. I was actually going to wait to post about this new struggle, but I needed to "write it out" to help begin the processing . . . er . . . process. I don't know how I feel about all of this. I know I feel sad. I don't know what I'm going to do yet other than seek a rheumatologist in the Shreveport area. Right now, I'm disoriented, sobered and kind of horrified. Simply put, I'm in shock. I have no arc of thought on the subject. My thoughts are scattered and scrambled, but I keep coming back to these--

"This is the real food I need--Christ's unconditional commitment to me."--Timothy Keller

"And all things work together for the good of those who love God, who have been called according to His purpose."--Romans 8:28

"I believe in a blessing I don't understand.
I've seen rain fall on the wicked and the just.
Rain is no measure of His faithfulness.
He withholds no good thing from us . . .
I believe in a peace that flows deeper than pain;
that broken find healing in love.
Pain is no measure of His faithfulness.
He withholds no good thing from us . . .
I will open my hands, will open my heart . . .
I am nodding my head an emphatic yes to all that you have for me."
--Sara Groves, "Open My Hands" from her new album, Invisible Empires

"But He knows the way that I take;
When He has tested me, I shall come forth as gold.
My foot has held fast to His steps;
I have kept His way and not turned aside.
I have not departed from the commandment of His lips;
I have treasured the words of His mouth
more than my necessary food [emphasis mine]. . .
For He performs what is appointed for me,
and many such things are with Him."
 --Job 23:10-12, 14

"Whom have I in heaven but You?
And there is none upon the earth that I desire besides You.
My flesh and my heart fail,
but God is the strength of my heart and my portion forever."
--Psalm 73:25-26

 I don't know where this road leads, but in my mind, it has already led to some dark and scary places, places I can't bear to look into for long. I don't know the answer to "why me?" And believe me, I've asked it. I have no idea what God is thinking, planning, doing.

Here is what I do know--

God is still in control. Mine is not a situation beyond His reach.

God HAS a plan, and that plan is for my good. (Romans 8:28, Jeremiah 29:11)

My purpose in this life has not changed. I exist for the glory of God and to spread the glory of His name in the world. Apparently, He deems that the best way for me to accomplish this purpose is without my health.

God isn't going to throw me out sick and helpless to fend for myself. He loves me. He will strengthen me and help me. He is with me always.

As I process, adapt and seek medical attention, I could really use your prayers, your encouragement, your favorite scriptures, etc. I'm scared, ya'll. I can't even begin to tell you of all the things I fear. I don't even know them myself. So, when you think of me, lift me to the Father, who has given me this illness not in spite of His love for me, but because of it.



9 comments:

GloryandGrace said...

Dear sister & friend,

Words escape me, but I'm reminded that my own feeble attempts at the right thing to say are not what's needed in moments like this. I am praying for you, and I'm increasingly encouraged by you.

One Truth I have been clinging to recently, and one I hope is of the deepest comfort to you is that He is my Keeper. It came to mind again when you noted that you are afforded such trials because He loves you. What an encouragement and testimony of that reality; all He affords, the sweet blessings and the great pains, are because He loves us. He is your Keeper and the Sustainer of your life. The greater purpose behind all this is not lost on Him, but was authored by Him. If no other comfort brings rest to your soul, my hope is that you are reminded of that incredible Truth.
You are loved - Grace and peace to you, my sister~

MelissaKeaster said...

Thank you, Jennifer. What a sweet reminder . . . .He is my Keeper and Sustainer. I've allowed this to roll around in my mind today. Thank you, thank you.

Anonymous said...

Hello sweet one <3
I don't know you, read you blog through Facebook !! Please know how amazing you are, stronger than you even know. I will pray fervently for you and your precious family. When I have faced health crisis, I am always reminded in that time, of confusion, doubt, and fear... Of Psalm 46:10 "Be still and know I am God" I pray in the stillness, you may feel the warmth of God's arms around you! That you may be still and crawl into his lap in prayer and KNOW he does have a plan. He loves you and you precious children more than we can ever comprehend , he will bring you all through this. Victory will be yours, the glory and all the honor will be his. Believe it, claim it and receive it in Jesus name sweet one, AMEN!

Anonymous said...

Melissa, This is Jessica Bremer. I need to apologize to you as I have felt that I needed to talk to you for weeks about this and haven't. As we have gone through all this and Kensli's diagnosis, I felt I needed to call you and tell you that maybe yours was auto immune as well. Kensli's immunologist is in Monroe, and I have never felt so comfortable with a doctor. He calls me himself to give and. explain test results and diagnosis. His name is Giannoble. I am praying for you. As a Mom of a child in your situation, I understand the pain and fear. If you need anything or to just talk, feel free to call me anytime!

JoAnna said...

I, too, just stumbled upon your blog through Facebook.. and will be praying for you & your family!

5 years ago, God took me through a very intense restoration time... Changing my thoughts, belief systems, marriage & eventually health. I had one auto immune disease on top of another, with multiple in my family line as well.

There is a book that was HUGELY instrumental to me during that time (I still reference it from time to time) & I HIGHLY recommend reading it!

"A More Excellent Way" by Henry Wright
My email is zackorjo@yahoo.com

MelissaKeaster said...

Thank you for the prayers and sweet reminder, friend. God bless!

MelissaKeaster said...

Jessica, don't you dare feel bad. I've been suspecting since before your girl's diagnosis. I just didn't want to start seeing doctors, running tests and taking meds while Sara was still nursing. My body just decided to flip the switch before I was ready to act. Love you and your girl. Thanks for the prayers, and know that sweet Kensli is in my thoughts.

MelissaKeaster said...

Thank you for your thoughts and book recommendation. I will check it out!

threasa said...

Wow, your story is a lot like mine. Last week after crying out for help praying, I was led to a site about lectins. I knew I was already allergic to a lot of foods with that the article said had high lectin levels, but gave up potatoes too and Praise God, I am so much better.