I must be singing one heck of a melody

While I really liked this doctor, when he first came in staring at my chart, fumbling over what to say until finally settling with ” wow…you’ve got quite the medical stuff. I’ve never worked with anyone with such an extensive history,” I knew I would probably not get the results I was hoping for. He was very intrigued by what Fibrosing Mediastinitis was and had a lot of questions.  Once I mentioned I had eight stents and what FM actually does, he looked at me and seemed hesitant to ask the severity of my condition, so I joked by saying I was given 10 years to live but am going on 13 so it’s kind of life threatening πŸ™‚ He didn’t laugh and continued to read through my chart.

We reviewed my symptoms and he also pulled up the MRI which showed that I had a very large herniated disc and then the disc below it was torn. And after doing a physical exam and me not presenting “normal” symptoms, he felt more than just one nerve must be affected. After discussing options, he did feel I would be a good candidate for the injection, “however”…and this is where I tried my hardest to keep my composure as I knew what was coming.

Because of my FM, he wants to talk to my Iowa City doctors to make sure this injection would not cause any complications due to my FM. He also informed me that I would need to be taken off of plavix for seven days before I could get the injection so he also needed that approval from my doctor as well. This doctor explained some of the risks with the injection and while he said he had no issues actually doing the procedure, he knew nothing about my illness and wanted to discuss everything with my Iowa City doctors before proceeding.

By this time I was unable to prevent the tears from flowing down my face. This was the final punch I could take. I explained how miserable I have been over the last couple of months from the pain and how I can barely function, I can’t sit long yet I can’t walk or stand long either, not to mention my eye surgery and all of the testing I’ve been through but then…I just stopped talking, feeling helpless and back in that all too familiar spot, knowing my pleas would only get me a remorseful look from the doctor saying he was sorry. But thankfully Tim spoke up after I shut down.

We discussed stronger pain medications but again I want something to actually help the problem, not just cover it up. It was decided that I would try some medications that actually target the nerves that are being affected, hoping that might alleviate some of the discomfort. We also plan to set up physical therapy with traction that he said is specifically used in situations like mine where the herniated disc is so big. I had no idea what that was and when Tim began telling me they basically strap me in and hang me upside down…I just told him to stop😳 The plan is for me to talk to my pulmonologist and then he would talk to my cardiologist and hopefully things will get lined up for me to get the injection.

I thanked him for his help as he did seem extremely sincere but the minute we were out of his office, I completely broke down…in front of Tim. I tried to control my sobs as I walked as fast as I could to the bathroom, wanting to cry in privacy…but remember my back and leg are bad so this was not a fast walk ( run Forrest run!)…which made me cry even more! Ha!

I tried to pull myself together while in the bathroom and then Tim and I got to the truck and of course this is the song that was playing….which only led to more crying…and more uncomfortableness for Tim πŸ™‚ Yes, God, I know You are still with me, so I continued to listen to the lyrics as Tim and I sat in silence.

Once calmed down, I was able to call my favorite nurse in Iowa City only to discover she is on vacation until next Monday. I just chuckled and thought “really God, you’re going to even make this difficult?” I was then able to leave a message for another nurse asking her to have my doctor call this new doctor asap in regard to my pain and getting an injection set up. I have yet to hear anything back.

Then as I was talking to mom, I mentioned things will probably turn into a bigger mess, if that’s even possible, now that we are getting Iowa City involved. She told me to stop thinking like that and I got short with her and basically said the reality of my health is that it is ever lasting and everything will always be a hassle. It’s always been that way so why should I think that’s going to change now? I’m not thinking negatively, I’m accepting reality.  This doesn’t mean I’m giving up though.

To top the day off, I got my sleep study results back indicating that I don’t get much deep sleep or much REM sleep. The doctor felt this could be due to the pain I have at night from my FM but again, to treat this, we must treat the “underlying medical issue”…which is my FM…but there is no treatment for FM…

It’s frustrating yes, and once again, this is by far the worst stretch of health problems I’ve had since 2013 when we discovered my disease was progressing.  Tim and I both feel that my body has not been the same since the blood clot in my chest back in 2013. My body is completely broken! I am back to symptoms and answers, but no help.  Now I wait for doctors to contact each other so that hopefully maybe in a couple of weeks I can proceed with the injection. Until then I will pray that these other medications provide at least some sort of relief.

I was pretty upset after my appointment and have had a rough day, even crying the entire time while writing this blog.  I know my disease is rare and I can’t blame the doctors for not wanting to do anything, actually I like the fact that they won’t doing anything until they know for sure what they are dealing with…which I always tell them…I am a medical mystery. But still frustrating. And then part of me gets mad at myself because I know I am complicated and I know it’s going to be a battle getting help for the simplest things…so maybe I just need to always go straight to Iowa City instead of trying to stay local.  But I already see SIX specialists in Iowa City and do you know I can never schedule appointments on the same day because they all have different days that they are in the clinic.  This was supposed to be a simple injection!  I really did not think it would be a big deal, it’s an injection, not surgery.

I started thinking what am I doing wrong or what areas of my life must I be failing to keep being tested like this.  What am I missing God??? Why do You keep putting me through this? But then I stop and know that it’s nothing I have done or anything I have failed at…and in fact these doubts are the enemy trying to make me turn away and not trust God. Everything I have gone through in the past that I thought was going to finally break me, actually brought me to amazing and beautiful things…and one of the most important things my trials have brought me to is a stronger relationship with God. I do know He has a plan for all of this so I will continue to pray and trust and rely on His strength and His mercy to pull me through.

And in my last blog I encouraged everyone to find something to smile about in every day? Well, when I got home I was able to cuddle with Asher, put a bandaid on Leah to make her ouchy better and I was able to talk with Skyler and Nathan about their day…so this was my something to make me smile today. 

Oh, and tomorrow is fashion disaster day at the high school for homecoming week…Tim says these vests were his brother’s but I’m not convinced…and this definitely made me smile…yet a little disturbing!  Thank you for all of your prayers and words of  encouragement.

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