First, Matt & I went away this past weekend to a Family Builders Ministries "Stronger Together" Getaway... it's for married couples who deal with chronic illness or a disability. I'll be honest, I wanted to cancel. The weeks leading up to our trip were horrible. My pain, hospital and doctor visits, our stress levels, and our marriage were all out of wack. I was super nervous about leaving the kids for the weekend, it's a lot for someone who is used to it, but nobody other than me has ever taken care of all of them for that long...our nights are hard, our days are even harder... and between the anxiety I felt over that mixed with feeling awkward about going (and claiming the title 'chronically ill') and where Matt & I were at, I just wanted to cancel.
I worked like crazy to get the house and meals prepped for the kids and it almost felt like more work than it was worth... but see, we were granted a scholarship and only had to pay the deposit, which my friend Donna paid for - along with her giving us gift cards for gas and dinner while we were away - so basically the weekend was pretty well covered.... and it was pretty obvious God wanted us there.
Well, by Friday night, we were already in a better place and by Sunday, I felt revived... the weekend went by way too fast and it was amazing. (I HIGHLY recommend it!) Just the right amount of great teaching, fellowship, worship and (gluten free for me!!) food... and they scheduled from 2:30 on Saturday to be free time for us to just be together - we NEVER get that kind of time together... it was so needed. I honestly wanted to do absolutely nothing. I just wanted to relax...We sat around and ate chips and watched Sleepless in Seattle - LOL. Rested together and laughed. And got some open communication going about my chronic pain and how that affects our family. It was amazing.
They had musical artists Jonas & Becky there and they performed as well as led us in worship on Sunday morning. Even they had a story to share about their journey through Becky's cancer... and we were blessed to be able to interact with them one on one and it was so encouraging to hear all that God has done in their lives. Becky makes jewelry she was selling and I bought myself a bracelet. It was selling for less because it was 'slightly imperfect', but I happen to like imperfect things, so it was perfect for me. The 'perfect' part is that what it says on it is exactly what God has been speaking to me for months now - I wrote similar words on a card I put in my Bible back in my woman's study in September... It's not my battle, but the Lords..... And a similar theme ran thru many of the songs at the getaway about the Victory being the Lords....
Fast forward to my appointment with the Neck Specialist yesterday... I told you I'm getting used to contradictory information... and that I was expecting it to a certain degree... but I had no idea how much so. When I got there, they took my blood pressure and it was 150/100. I started crying as soon as she told me. I have a very hard time not worrying about my aneurysm when my blood pressure gets high and at this point, it's happening regularly, even on meds. Unfortunately, my pain levels make it higher so I'm not sure what it would be if I wasn't in constant pain, but I get major anxiety when it goes above 95 on the bottom. We all know high blood pressure and aneurysms don't mix.
So, when the doctor walked in, I was already puffy eyed and as soon as he started asking me what was going on and I started telling him the slew of diagnoses I have been given and all of my symptoms still undiagnosed, I cried more. I calmed down and as he started talking, I couldn't believe my ears...
He said I don't have one bulging disc in my neck, I have THREE. But he doesn't think surgery is needed... okay, so there goes my big plan. I was told that all of my nerve issues in my arms, legs, feet, and hands all were stemming from my disc (singular!) issue and my hope was this dude was going to fix that and make me better. So when he said he didn't think my symptoms were from my neck, the tears started again. Then, he went on to say that my Syrinx isn't pushing enough on my spinal column to cause the numbness in my back or the charlie horse in my stomach - both of which the neurologist said were being caused by my syrinx. okay, so now I'm back to not knowing why those things are happening - which happen to be two of my very first concerns MONTHS ago.
After he contradicted every. single. thing I thought I had figured out, I finally said "What do you suppose I do now? I was under the impression that all of these symptoms are from these things and waited a long time to get into see you and now you're saying they aren't and honestly, I'm getting really tired of hearing a different answer to every question from every specialist I see, so what the hell do I do with this?!"
He asked why my Rheumatologist hasn't put me on meds for my joint pain yet and I said he has tried, but I'm scared of the side effects of Humira and don't want to take it. He admitted it's a fairly new drug, but assured me that the side effects of Prednisone (which usually works really well for me but is mostly used as a short term thing) are worse... I'm obviously not an expert, but I'm just guessing that when Prednisone was new, they had no idea that the long term effects would be what they now know they are. It has to be around long term to know that and Humira has not been around long enough for that. And anyway, I don't have to do anything I'm not comfortable with.
And this is when he gave me a few more diagnoses... he asked if I had birthed all 5 of my kids and I said "Actually 6 of them, but one died." He ignored that statement completely and said I had too many kids and my body is out of shape because of them. He said "You have horrible posture, I mean, look at you... AND,,,you are depressed, I could tell the second I saw you that you're depressed."
God's great mercy and grace was upon that man because if not, I assure I would not have sat through that. I think I was so dumb founded and so discouraged that I had not a word come to mind. Not one. I just pulled my shoulders back because he was clearly disgusted with my posture and cried. Then he said that the only thing other than PT that he would recommend would be a Physiatrist because they can offer counseling too. He said "I'm a surgeon and if people don't need surgery then I don't follow them, but the people upstairs (physiatrist) will."
I walked to my truck and as soon as I shut the door, I sobbed. hard. I couldn't even drive I was crying so hard. And you know what? that was exactly what I needed. I needed that jerk to be mean and be so out of line with "diagnosing" me for me to hear God loud and clear.
I remembered my bracelet I bought at the getaway
And I swear, I think I said "I can't do this anymore" about 100 times to myself driving home and another 100 when I told my mom and Matt what had happened. And I can't. I can't chase answers anymore. Nobody wants to help me, nobody wants to dig deeper and be proactive. And if they don't want to, I can't make them and all I'm going to do is drive myself crazy trying to get people to listen to me. So I'm done. I need to refocus, get back to basics and leave it at the foot of the cross. I don't want to talk circles around it, I don't even want to talk about it at all. It's not doing anything but raising my blood pressure and I don't have room for that. God has this and I'm crazy if I think I can handle it better than he can. He never promised me I wouldn't have physical pain in life and I'm a tough girl, I can handle pain. It's the mental aspect of not knowing what is happening that I can't handle, but this poop show of an appointment just brought me to a new low... and new place of surrender... a place low enough that the only way I can get back up is to get on my knees first and that's exactly where I need to be. I trust God and so that is what I'm going to do. I'm not trusting the doctors, I'm not trusting myself. I'm trusting God. He'll guide me and protect me and if he chooses to take me home, I know He is enough for my kids and Matt too.
He will fight the fight. The victory is HIS. I need only be still.
And when I truly rest in that place, the power of the fear doesn't exist. Yes, fear comes, but the Truth can cast it out better than any doctor listening or any accurate diagnosis. Either way, I have pain so at this point, I'm choosing sanity. And for me, that means letting go of my need to know and my desire for control... If I did it with Rachel, I can do it with this.
Pray for me that I don't pick it back up. Pray that this new found energy I have will continue - to work hard for my health the way I always have (the 'specialist' had me wrong there! I've had a lot of babies, but I have ALWAYS exercised and cared about my diet. The kids haven't made me weak, all these freaking doctor visits and diagnoses have!!) Pray that I will rest in God's hands and not let all of this steal my joy and waste my precious and irreplaceable time with my family.
I think I'm going to work on getting those massages, doing some PT, and remembering who my Great Physician is. My God is always right on time and I'm positive that he will take care of me.
I got a call from my friend Sarah after I got home from that apt and I was still crying when she called. I had forgotten about our plans for a girls night with my local baby loss mama friends. I wanted to back out of that too because I was puffy eyed, wearing sweats and have cold sores on my face. Feeling really pretty and couldn't stop crying. But we don't get together all that often and God prompted me to say I would go - so she came and picked me up. They surprised me with an early celebration for Rachel's birthday with cards and gifts and gave me gifts for the baby shower. I had a much needed reprieve from my horrible day and came home smiling. God has continued to love on me through others today and I just got this beautiful handmade daisy blanket in the mail that my friend Jaimi made me (keeping warm with it right now on the first day of snow!). 6 days to go until her birthday and I'm so thankful that others are remembering her for/with me. My heart needs it right now.
And last, but certainly not least... Today was Isaiah's 8th birthday - that boy gives *the* best hugs. He's turning into a pretty amazing young man. I'm so thankful for another day.