Wednesday, December 14, 2011


I promised I would post the "after" before it became months after and here I am. I decided I better get it down while it was all fresh.

One of my doctor's said that I might discover just how much my meds are doing for me when I come off of them for this test and go without. That was partly right. I did find out how much they were blocking many of my symptoms because I was down and out miserable for the three days prior to the test and going in to the test. In fact, I was in such bad shape the doctor had doubts about my ability to get through the test (but that is jumping ahead). It did confirm to me that I have a bad case of fibromyalgia, in case I had doubts. My hands and feet felt like someone was pounding nails in them the first day. Then they were on fire the next day. The day after that they were just ice cold and sweaty and hurt. Sleeping was iffy all three days. My TMJ reactivated in a big way. And I couldn't breathe deeply because my left side hurt for two days. I also had a meltdown on day three when I was convinced I was having a heart attack. That was when my hands and feet went numb and shooting pains when down my left arm. Of course, none of this was helped by the fact that I dreamt that I died on night one and I literally felt my spirit leave my body. It was very peaceful and I think my dad was there. Also, all of my nerve endings were screaming. I could hear and smell everything. Anytime I breathed deeply my teeth hurt. I constantly thought about pulling all of my teeth out with pliers. 24.7. By day three all of muscles went into involuntary spasm including the ones on my face. So, I was literally this jerking mess who had no control over my body. Now, throw in the fact that I was so dizzy all of the time and couldn't eat for three days because I was constantly nauseated and you have a fairly complete picture of what I looked like on Monday for this test. Oh, and coming off my meds gave me the runs. It REALLY wasn't pretty.

So, when the doctor said we might not be able to do it, all I could hear in my head was Joy from MY NAME IS EARL. Joy has a foul mouth. Fortunately, I kept it inside. But, Joy said, "Ah hell to the no."

And Robin said, "I think we should give it a try." And that meant pulling it together and exercising every last bit of control and getting through it because I was not going through this again. Of course, somewhere in that drug induced nightmare, I already decided not to go back on some of my meds NO MATTER WHAT. Yeah, you read that right. Doctors are funny people. My doctor would have read that and said, "But all of that pain was caused by you going off that medication."

My response is this: "But sir: I wasn't THAT BAD BEFORE I WENT ON!"

And that says to me that something has to give. Yeah, I had a lot of pain. I was hurting. I still am. But, I wasn't a freak show.

Back to the test.

I made it through. And found out some bad news about my inner ear. Turns out that most people who have an inner ear problem usually have a problem on one side. That is not great but one side can rehab off the other side. That reminds me how amazing the body is. Turns out that my inner was blown in both sides. I have less than 30% function in both sides. It totally explains the dizziness I am feeling. The doctor says that I literally cannot find myself in space. There are no pills, no surgery for this. However, there is vertibral rehab. The idea is to (re)teach your inner ear all of this stuff that it used to know. Until then, I am very reliant on physical and visual cues. It is why I always need to lean my head against something in order to not feel sick to my stomach. That is how I know where I am in space. It is why I spend a lot of time holding onto walls when I walk. Quick turns are not a good idea. It is why I landed in the bathtub that time after flushing the toilet.

As for the what caused this? The doctor doesn't know. It can be anything from medications to an infection to an autoimmune issue. The thing is that there are lots of causes. My gut says that it is one or the combo of these meds to treat the fibro and the antidepressants. They have all had bad side effects with me. Namely they continue to make my hair fall out. I realized that in my three day horror when all of my senses were heightened and I was lying in bed with nothing to do but think. I have already begun the search for natural alternatives and will suffer the difference. I am going to push my doctor for rehab alternatives to treat my fibro, as opposed to medicinal ones. I want my inner ear to repair itself; I don't want it battling against any drugs that caused the damage in the first place.

As for the hint of Jasmine... I finally met The Yellow Rose of Texas... my first blog friend come to life in person. My only wish is that I had been in a healthier place. She caught me the day after the hearing test. I was back on enough of my meds that I wasn't a blobbering fool. Plus, I had gotten some sleep. We only met for a few hours and it was pretty much all spent at yet another one of my doctor appts (yes, the timing was sucky). However, she was delightful and it was exciting how many ideas we had in common!!! Not only that, but shared life experience! How exciting to say... and then this happened, but I learned such and such and to have another voice pipe in and say "Me too!" Yes, it was a great time! We laughed a lot and sighed a lot and did some head shaking over some life lessons that we wish had come easier or sooner... but it is what it is! My only regret is that we forgot to take a picture... not that she would have let me post it... lol.

image found at


  1. Wow. You've really been through the ringer, haven't you? I was diagnosed with Fibromyalgia years ago but seriously haven't had any symptoms since I started walking and removed the gluten from my diet. Of course, I also don't have such an intense case of it as you do. I hope you find something that will work for you!

    It's so great that you got to meet a blog friend in person! I'm hoping to do that soon myself!

  2. ouch. Sounds like hell. I am glad they were able to pinpoint your issues with your ears. I wish they had a fix for everything else..if wishes were horses I guess. Glad you are back to writing on your blog again. Hugs.

  3. Robin: None of which has hindered your wonderful writing ability. You have a natural ability to express your thoughts effectively. Welcome back.

  4. Dante did not envision a circle of hell like the one you went through to prepare for that test ....

  5. Ahh, you beat me to it- I will post a bit about our visit as soon as I come out of my holiday/travel/family haze! Robin, you truly are an amazing person and simply delightful yourself in spite of everything you deal with.

  6. I believe nothing is worse than all the side effects from the medications our docs put us on, we are human guinea pigs as Fibro reacts differently in all of us, but oh the meds can be more scary! I felt your pain sweetie, I know the burning of the feet, the jerkiness, terrible. Praying you feel better soon!

  7. This sounds so incredibly, deeply hard. I am so sorry, Robin, for what you have gone through, although it seems like you are able to handle the things that life throws at you with grace and a sense of humor, and that's the most important thing in the world, I think.

    You are awesome. I look up to you so much. Wishing you a more peaceful 2012, hon. Go and find your space.


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