Time is funny isn’t it? How it can seem to move so slowly for a while and then it seems as though you blink and you’ve lost weeks, months even, to the different things that make up your day.
I don’t know that I have ever taken such a long break from writing since I started back in 2010 and this hiatus (I guess we can call it that) wasn’t on purpose. At first I felt like I had run out of things to say; I tried to plan different posts and even tried my hand at writing for online publications for a little while and when that didn’t fit right I became comfortable saying nothing at all.
I guess you could say that I am motivated to write by my feelings, specifically my feelings about things happening in my life. The catch being that I often times get blocked by my fear of being too vulnerable in a world where everyone has an opinion and keyboard warriors are in no short supply. So even when I think I have something to say, I stop and analyze the crap out of it and decide not to write at all.
The biggest hold up is content. This blog started out as a place for me to talk about my medical journey, and you guys have been more than supportive in that endeavor, but life in all it’s glory has decided that health would not be the only hurdle I’d have to jump over this year and I felt as though I would be doing a disservice to the blog if I wrote about anything non-health related here. So again, I stopped writing all together.
All of this to say that while I was preparing myself a snack after my nephew’s birthday party on this beautiful Sunday evening I was suddenly overwhelmed with a feeling I haven’t had since right after The Hubs Hurt His Toes. At first I waved it away, then I told myself I would have my snack first (since I already cut open the banana which, as you know is a time sensitive thing once it’s been opened) and then I decided I would just get started while I waited for the toaster. It’s been at least five minutes since the English Muffins popped up and here I am, glued to my keyboard.
I have to write.
I have to write and I have to do it right now. I don’t need to plan out what I want to say because it’s literally coming too fast for my fingers to keep up. This is how it used to feel for me to write. Before I decided I wanted to be an advocate, before I decided I wanted to have a Facebook page and Instagram followers and people to speak for. Before it felt like my job it felt like me.
For years now my life has been a constant ebb and flow of pain. Some days I am more me than pain and other days I am more pain than me but it’s always there. In the beginning we went so hard at the search for a cure that every single time a surgeon said “I can fix it.” I jumped on the operating table. After my surgery in 2013 I knew I had reached my limit, my heart wasn’t in it anymore. I just couldn’t keep going from doctor to doctor, recovery to recovery trying to fix something that clearly wasn’t an easy fix.
In fact, it seemed like every time we intervened surgically it got worse and I was running out of the ability to tolerate any worse. So we put the brakes on that portion of pain management and went the route of more Physical Therapy and Pain Management with medications.
For about a year I was pretty happy with my Pain Management program and life was finding it’s new normal. We had a summer full of trips to the beach, a WI Dells week away with the kids. The Fourth of July was a blast and all the kids celebrated their birthdays with homemade cupcakes and full blown dinners per their request. I was content with my life and the role my pain held in it.
Once the kids headed back to school I started to struggle a bit with a new, odd sort of pain unlike my “normal pain.” Imaging showed nothing so I assumed it was more of the same and as the year went on the pain has gotten worse. By December of 2015 my Pain Management regimen was not sufficient enough for my heightened discomfort.
Each month I would go to my Pain Specialist and each month we would talk about increasing my dosage versus pacing. Each month I chose pacing, and then about halfway to the next appointment I would kick myself for not taking the increase. It wasn’t necessarily that my doctor didn’t want to give it to me, it’s that I didn’t want to need it.
Until I did.
In February, when I was in the throes of a flare that was relentless for 10 days I finally gave in and took to the internet to look into new specialists to take a peek at me. At the beginning of March I scheduled appointments to meet with an OB/Gyn who specializes in pelvic pain and an Interventional Radiologist who specializes in PCS. Fresh eyes, new providers who haven’t treated me before; clean slate so to speak.
When I went in for my appointment with Dr. Beadle I was so nervous. Blood Pressure 157/100 nervous. I was so afraid he would tell me there was nothing he could do, nothing to fix and tell me I didn’t need my meds. I prayed that morning, asking God to show this doctor something. If it was in His will that I find relief from this new, intense, intolerable pain in any capacity I prayed that this doctor would be the one to see it.
I spend the better part of three hours in the clinic going from manual exam to ultra sound to consultation to scheduling surgery.
Surgery # 8 (procedure # 10) is a mere 39 hours away and I am both chomping at the bit for those moments to pass and dreading the recovery at the same time. While my ultrasounds are negative for abnormalities this doctor is quite positive that my intense surgical past has created a mess of scar tissue build-up in my pelvic area wreaking havoc on my organs and ligaments. (Also known as Pelvic Adhesive Disease) Faced with the options of either upping my dose of medication or attempting to remove the very thing causing the pain I decided I owed it to my future body to try and remove it before taking more medication.
So, tomorrow I will meet with the new Interventional Radiologist to look at the Pelvic Congestion Syndrome diagnosis and determine if there is more to be treated, and Tuesday morning I will be undergoing my second exploratory Laparoscopy to (hopefully) take down any adhesions that are causing me pain in my pelvis.
Part of me is confident this will work, the other part of me is terrified there will be nothing in there for him to remove; then what?
Over the next two days I will be getting a whole lot of answers about a whole lot of things and hopefully, God willing, some pain relief. It doesn’t have to be 100%, I’m not expecting pain free by any means, but I’ve got a life to live and I owe it to myself to try everything I can to live it to my fullest capabilities. Besides, summer is coming.