In the Middle of my Story…

My devotional yesterday was titled, ‘Crumbling Walls’ –  it’s like God knows just what we need to hear, when we need to hear it! Here’s an excerpt:

It is never easy, but courageous people choose to put their faith in what they know about God.  His trustworthy nature- instead of what they don’t know about their future.  They bravely choose to run to God, not away from Him, even when everything inside of them wants to pull back and protect themselves. – Christine Caine, Unshakable 

These last few weeks, actually this last year, I’ve felt like I’ve started to crumble a little bit. I hate to admit that because I want to appear so strong and positive, but I’ve felt broken in many ways. To start, we tried so hard to stay away from the crazy infusion series at the headache clinic, which was turning ‘our last resort,  felt heart breaking for me. And going through it, well…what a whip! Thanks to all who helped us out during this time – love you big!

THE BEGINNING

This pain and heartache isn’t new. I’ve had migraines almost my entire life – I think I had my first few in middle school/high school.  At that time our family doctor summed it up to allergy headaches (I had allergies too… ) but this was intense!  So for awhile I assumed this is what headaches felt like – all consuming pain! Fast forward to college when the pain and the frequency went into overdrive! Luckily I had a mother that fought for me case!! I saw several docs and specialists in the area and we ended up at a headache clinic across the state in Ann Arbor, by UofM. I remember my mom and I staying in a hotel there going through a slew of tests and treatment.  The outcome was hormone related – we found out I had hypothyroid and I also was put on a birth control to manage the dips in estrogen … in addition to a few maintenance meds.  I would still get 4-6 migraines a month, but I have literally been on this program for almost 20 years and managing a-ok!! 

BACK WITH A VENGEANCE 

In 2019 I had my biggest year in athletics – I trained hard, raced hard and after we got home from Europe I pulled it back rather abruptly. I had plantar fasciitis, we wanted to start a family and mentally I just needed a breather.  But it was like a bomb went off inside me …  my head started to explode almost everyday with migraines? Toss on Covid, a stressful job and losing my athletic identity I started to spiral… I woke up with uncontrollable pain each morning.  My neurologists tried EVERYTHING but in June 2020 docs put me on medical leave because I physically couldn’t work or really function! We thought removing the stress would help a bunch, but it didn’t… in fact, it got worse come September.  Along with my neuro,  I worked with MANY holistic docs, chiros, PTs, alternative approaches, nutritionists on elimination diets, supplements, etc. with no changes. At that time I was referred to UT Southwestern neurology department – 

After many appointments, physical therapy at their clinic now, injections of many kinds throughout the body, etc… I was told I was unresponsive to all resources available at UTSW!? I was then sent to the North Texas Institute of Neurology & Headache, which is where I’m at now.

FIGHTING THE BATTLE

I’ve been at the headache clinic since late October and they told me, as I’ve heard along the way, I have a unique case.  But in my first two+ hour consultation appointment, they shared that this is exactly what they do and will do everything they can to get my quality of life back.   For the first time, I felt like I found the place I was supposed to be. I’ve been seeing Dr. Soren (head neurologist) and Dr. Timm (specializes in menstrual/hormonal migraine).  I’m not going to lie, it’s been more trial and error, frustrating at times, and I have days I wonder if I’m ever going to heal and be the person I want to be for Paul, for my family, for my friends?! 

But Dr. Timm has really dug into my case and gives me hope each time I go in offering different thoughts, ideas and directions. I feel like she ‘gets me’ and truly wants to help. I’m not sure we would have proceeded with the infusions if she didn’t put her hand on my arm, look me straight in the eye and say, ‘Jules, I think we’re here… we need to do this.’

GETTING CLOSER

As I’ve shared, I started IV infusions every other day for two weeks, six total in February. I had a migraine almost everyday I went in to start treatment and was not a happy patient!  I was crabby, flustered and sure it wasn’t working for me.  (Great something else is failing I thought to myself?!) And poor Paul for dealing with me and taking care of my zombie self for two weeks!  It was not my best moments, at all! (thanks babe for videoing me under anesthesia too, lol)

During one of my first appointments prepping for infusions,  I was sharing all my symptoms (yet again!) All my docs have dismissed these as medication side effects but this time Dr. Timm took it a step further.  She said it could be a side effect of this

drug. yes, but let’s just double check – let’s run a few more tests. Up until this point ALL of my extensive blood work had been relatively normal – but she was digging even deeper!  Two red flags came back pointing to hormone issues??  Omgosh!

In the middle of the infusion week I got in to see an endocrinologist ASAP for a more extensive consultation and more labs. She put me on hormones immediately that day, before she even got the test results back… Given the Snowpocolypse, I didn’t get everything back for almost a week! Bottom line, ALL my hormones are completely out of whack! Like, my body is not making any… at all.

So, there is a long road ahead… while this is tough to hear and we have no idea why this is happening …

At least we have a road… for now.

Because you are my help, I sing in the shadow of your wings, I cling to you; your right hand upholds me. Psalm 63:7-8

Julie SimonIn the Middle of my Story…

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