What in the World is Chronic Spontaneous Urticaria (CSU)

A New Word in My Vocabulary

The past few days I’ve had several people reach out wondering why the strange pictures on social.  A new season. A new chapter. A new disease/illness. An overview.  

On Thurs., Feb. 8 I woke up with a weird rash on my shoulders and large hive welts on my knees. We were heading to Arizona for a few weeks. I wasn't stressed about it, but on the contrary very excited! I quickly assessed if I’d used anything strange or new in the last few days - no conclusions there. We didn’t see any reason not to leave, so we headed south for our little winter break. The next 5 days these areas persisted and were really just slightly annoying. Then they started spreading. 

After week 2 of intensifying itching and poor sleep as a result, I went to a walk-in clinic. There I was given a prednisone tapering dose, told to take OTC Allegra and Benadryl at night, some  steroid cream for the itch and told to go see a dermatologist and seek allergy testing.  I have enough of a medical background to know these tests and visits can often be fruitless even after lots of time, money and testing. So I started eliminating foods, observing what things made it worse or better (inconclusive) and tried numerous modalities (creams, supplements, antihistamines, CBD tinctures, homeopathic pellets). You name it - I tried it.  Oh and yes, add on cryotherapy and red light therapy, as well as multiple chiropractic treatments.  I didn’t care how much it cost. I needed relief.

Unfortunately, there was no change. More spreading. More and more itching. More and more sleepless nights.  More and more stealing my focus, my comfort and quite frankly, it consumed my thoughts every moment of the day and night. I decided to do a little video for the ladies in my beauty group, and one of my friends saw it and shared that she knew someone who had dealt with the same thing and found answers through a doctor in Ames. Given I hadn't been successful in getting an appointment in Arizona I was thrilled to get into this doc once home.

Doctor Visit Results

I already suspected what the immunologist/allergist here was going to say but didn’t know there was a name.  It’s called Chronic Spontaneous Urticaria, CSU for short. CSU is basically hives/rash of unknown origin and it’s as if the body is allergic to itself.  Why? Because the mast cells (we all have them - lots of them and they’re super important) have degradated and so I’m the allergy.  All those purple dots in this picture? That's histamine - one pharmacist told me it's as if you're mast cell is a pinata and it got wacked with a stick and all the candy (histamine) is now out of the cage and the goal is to put it back where it belongs. The good news - there’s a name. The bad news - now you’re labeled with a chronic illness, and there’s no guarantee of finding relief any time soon. 

The treatment?  Find the right “cocktail” of a combo of quadruple dose OTC and Rx antihistamines, perhaps Prednisone short-term if needed. If this regimen doesn’t work after another week, seek insurance approval for an expensive but often helpful injection called Xolair that hits another receptor in the mast cell.  After nearly 10 weeks of coping, the injection was approved and was administered this past week.  Now we pray the addition of this treatment will work to get this acute state under control. 

Suffering is an interesting thing.  Sometimes it’s physical. Sometimes emotional.  The suffering from this itch is unlike anything I’ve ever experienced. Some call it the devils itch. That’s accurate. The best way to describe it is that it feels like there are a thousand little bugs crawling under your skin and they’re crawling on these nerves. Your mind says “don’t itch”, but it’s so intense that you feel like if you could just dig out that itch and get down way under your skin and “kill that crawling bug”, it’ll be gone. But it’s never gone. It never leaves. So your body looks like you have small pox or leprosy (although I’ve never seen these on anyone), but it’s what I imagine someone to look like with these diseases.  After 8 weeks of coping with it, the suffering BOTH emotionally and physically starts to take its toll.  

So what do you do? 

You learn coping tools. You deep breathe. You pray. You spend much time in lamenting psalms. You put on worship music and play it full blast. You pace or walk (although don’t get too sweaty because heat makes it worse). You distract. You color. You fidget. You learn to be ok with needing a nap because you were up all night. You eat as clean (no dairy, gluten, sugar and low
histamine) as much as possible and keep a journal to identify any triggers. You put leftovers in the freezer because you learn histamine grows on leftovers (who knew??). You rely on your circle of close friends and family to help walk you off the edge when you’re on the edge. You build a team of professionals who understand and can help you be healthy once again. And I praise God for that team of both traditional doctors and functional & homeopathic practitioners (Dr. Cascio, Dr. VanOort, Sandra Blevins, Jayne Reysack and Ellen Majewski).  

And then you pray some more.  And you ask the Lord to help you still be Light. To be a warrior not a victim. And for Him to heal you however He chooses to heal you.  And you celebrate the little wins and the big and little ways you see God’s hand ever present day by day in that which has been ugly and discouraging. Friends bringing meals. Friends cleaning your house. Friends praying with you and over you and for you. Family calling you and texting you and bringing you flowers and listening and listening some more. And grandkids saying “grandma you should have called me and I’d be your nurse.”  [big smile here].  Co-workers being patient with you when you have brain fog from meds and lack of sleep. And a husband who in spite of dealing with some challenges of his own is steadfast and loving and caring and for better or worse, in sickness and in health, loves me all scabbed and scratched up and miserable and doesn’t question when I sleep 3 hours past my normal wakeup time.  I’ve said it more than once and I’ll say it again, he’s a Saint. 

I love these words in Psalm 3:3.  The psalmist starts the psalm in lament and then in V3 he writes "But You Lord".  But You Lord.  Powerful words that are especially meaningful to me in this season.  In all that's discouraging and difficult about this new illness/disease - whatever you want to call it, God is faithful.  He will see me through it. I can't go around it or under it. I have to go through it.  Just like grief.  But on the other side, I know He will use it - for His purpose and His glory.  Maybe not for my own sake but for someone else.  

I've labeled this blog "Seasons by Julie".  It's a season.  It won't define me. Oh, it's not fun. It's not fun at all. In fact, it pretty much stinks. But I'm defined by the One who created me and I don't walk through this season alone.