"Take a DEEP BREATH & HOLD....." (Part 1)

"OK, You can relax now."

That's what the Radiology Tech said after each picture she took. I was there for a "C-Spine" the date was 5/29/09. But let's start at the beginning...Or at least the beginning of May, 2009-at least to begin with.

It was just a couple of days after I had decided to "change my life" when it came to meeting men. I was going to do things totally differently, as you read from the beginning of my diary here.

The date was 5/1/09, it was about 4:00AM. I had already tried to sleep for several hours, having had the day off and done a lot around the house, ran errands, took and picked up my son from school, took us all to a nature preserve and ran around through the woods...It was a good day. But in the evening, for some reason my body didn't feel "right" I was restless...But did the usual ritual, took the meds I take to help with the muscle spasms I get while I sleep, and a couple of others. Got off of the computer at a decent time, probably around 11:30 and watched some TV.

I usually don't last long after that, falling asleep with the TV on but at some point turning it off when I-in the middle of my sleep-hear some man or woman with a way too excited voice trying to sell me something. "No thanks" I mumble, finding the remote and hitting the power button.

On that night, none of that happened. I couldn't get close to falling asleep. My whole entire body tingled, it was especially bad that night. See, this is not something that I like to advertise but I have Fibromyalgia.

Fibro is something that I have, however it does not define me. This is what I decided a long time ago, because Fibro took her hold on me and my life, changing everything...I was not the person I used to be, and my path would change drastically because of her. But she does not define me. I call Fibro a "she or her" because IT is a BITCH and it fits.

I don't tell people about Fibro because, well...Most people don't know what it is or most people think they know, but they really don't. It is rare that people have heard of it, and know what it is. And even then...They do not know. I truly feel that unless you have her in your life-not even knowing someone with it-but YOU have Fibro-is the only way you know her. If you know someone who has her then you are an acquaintance. So, I have several people in my life who are acquainted with her-who have felt the effects of her bitchiness-through me.

Mostly, it is one of those things that people don't need to know-unless they really get to know me. I can hide her like a twisted, rude, disgraceful family member-you'd never hear her name, much less meet her. It may depend on the situation, and what she's doing to me at any given time and if you've never heard of her-I can hide her. I've become quite good at it.

I was diagnosed in January of 2000, after undergoing over a year and a half of seeing my GP-doing all sorts of blood tests, thinking it could be Lupus, then going to see a couple of Neurologists (after having to be taken to the hospital because I couldn't move) they thought I may have Multiple Sclerosis. I had clinical examinations, an MRI of my brain (which looked normal) and lastly a Lumbar Puncture otherwise known as a Spinal Tap. The "LP" is done to see if "O-Bands" are present in the fluid and if they are, you have MS. The "LP" itself isn't the most comfortable thing in the world, and it's kind of freaky to think of a needle going into your spine, extracting precious spinal fluid. But, that wasn't the worst part. I was told I would have a headache withing a few hours of the "LP" and to lay completely flat. There's something about taking the fluid that leaves your brain all out of whack, and being completely horizontal is the only thing that helps. Well, I guess my body takes a long time to reproduce the fluid because I had to be completely flat for 7 days. It was horrible. I couldn't even have a pillow under my head-totally flat, that was it. And having to eat or pee or do anything that requires you to be upright makes you feel like your head will explode. Imagine the worst headache you've ever experienced, then multiply that my about a million. That's how bad it is. My "LP" came back "inconclusive". Making that week feel so much worse. Since all was "normal" I was sent to the final specialist-a Rheumatologist.

It took a few weeks to get an appointment with the Rheumatologist-and because that word has too many letters I will be using the word "Rheumie" from this point forward.

The Rheumie and I went over my history, not only for the previous year and a half but since I was about 12 years-old. At the age of 12 I had horrible joint and muscle pain, my Pediatrician tested me for RA but that came back normal. He decided it was growing pains, however no one I knew felt the way I did. I was in horrible pain, everything hurt and I was exhausted. Finally that subsided considerably after about 6-8 months and since I grew over 3 inches in one summer it seemed to make sense. When I got a little older, around the age of 16 I had horrible stomach problems. Upper and Lower GI's and other non lady-like type tests all came back normal.

Over time these the stomach issues got better. Later on when I was between the ages of 16-18 I had horrible headaches. The horrible headaches migrated into full on Migraines, then by the time I was about 18 they turned into what I call "Ice Pick Headaches". Those felt like someone would jab an icepick into my head at rapid succession-BAM-BAM-BAM-BAM. Sometimes only 5 times, sometimes up to 15. They would pretty much knock me on my ass. But when they were done, and I could see straight again-I was ok, unless of course I had a few bouts of that in a short period of time and then I would get a bad Migraine. But, let's not forget that during this entire period of time, even after my body was done doing all the growing it would do-I still had intermittent joint and muscle pain and fatigue.

I had CT's, MRI's and allergy tests done to try to explain the crazy headaches I would get. All tests came back normal.

It's very frustrating going through most of your life with one health issue after another and have every test come back normal. The more time went on the more I expected to hear the phrase "the test came back normal" while feeling anything but NORMAL.

OK, back to the part when I started seeing my GP in 1998 and going a year and a half of tests and doctors. The reason for all of that was that all of the symptoms that I described starting at the age of 12 all hit at once, I was 25. I had horrible joint and muscle pains, my stomach was a joke, I had headaches constantly and the fatigue was debilitating and it all got progressively worse and worse. If I could get myself out of bed and ready for work-by the time I got there I was so exhausted, in so much pain that I would have to go back home. That 15 minute drive felt like a cross-country trip. It got to the point that I couldn't work. My son was 3 years old at the time and there were many times that I could not care for him. At this point I was divorced and his dad took over, but he would bring my son to see me so we could at least spend some time together.

It was hell. The pain was hell, the fatigue, the inability to care for my son, not knowing what was wrong with me and wondering if I was never going to have an answer was hell. Even stressing about what people thought of me was hell. Did they think I was crazy? Did they think I was making it up or a Hypochondriac? (Actually, I wondered if people thought that my entire life). What I was dealing with was all real, and it was really pulling me further and further away from my real life. The life I wanted back. I was in living hell.

I had my first appointment with the Rheumie in January of 2000 and she got the back story, she asked me many questions and I came with a notebook-my "What the hell is wrong with me?" notebook. When I read my notebook to her I would read her face for a response. Her face said, "You're not crazy." Then she asked me very specific questions, it was so long ago at this point that I can't remember all that she asked me but I always remember this one- "Have you experienced a lot of hair loss?" My eyes got big. "Yes, yes I have...It was falling out a lot, so much so that I cut about 9 inches off so when it did fall out it didn't seem like so much." My hair. My gorgeous hair...My hair had been so thick when I was younger (in a ponytail it was about 2 1/2 inches in diameter) and they say that during pregnancy you can lose some hair and I hardly did but when I got really sick A LOT fell out-more than half probably. It was heartbreaking. Yet I never considered it a symptom of what was wrong.

"OK," she said "I'm going to examine you now. I am going to gently touch you in very specific spots and I will be as gentle as possible." She touched my back by my shoulder blades and it felt like I knife went through me-I jumped and cried out.

"I'm sorry. But I have to check several other spots." She did this over and over and it felt like she was going through an entire wooden block of Ginsu Knives. But she was hardly touching me. I knew it, I could see it when she did my front side, she was hardly touching me-but it didn't feel like it-not at all.

She sat down and said, "Vanessa, I have no doubt that you have Fibromyalgia." I was a mix of emotions. On one hand it was nice to have a name to go with all of the crap I was feeling for so long, that every test betrayed and taunted me by coming back "normal".

"But my Neurologist said that I DIDN'T have Fibromyalgia-she did the touch test thing you just did and I had no reaction at all and that was just a few weeks ago."

"With all due respect to your Neurologist, they are not specialists in Fibromyalgia and 'The Tender Point' test is extremely specific, the illness is very complicated and requires specialized training. (That was her very politically correct way of saying, "Yeah, your Brain Doctor didn't do it right.) With all that you have been experiencing-since you were a child and in the last 18 months, with every test that you've done coming back normal, and when I just did your Tender Point Test-there being 18 spots on your body & you have every one. You have Fibromyalgia."

I was diagnosed with Fibromyalgia. Huh.

"So, what do we do about it? Is there a cure, a medication? What?" I was so hopeful.

"Well, there isn't a cure and yes there are medications. It's about management of your Fibromyalgia."

Pain meds, muscle relaxants, anti-depression drugs. Damn.

"We will start at square one, see how it goes with you, how you feel. We will probably have to adjust the medications to find what works best, it will take some time but now that we know what it is, it will begin to get better."

It might sound completely insane but having a diagnosis of SOMETHING, albeit and incurable SOMETHING is still SOMETHING. I remember calling my boyfriend as soon as I got to my car to tell him as if I just landed a new super cool job, "Miles? Guess what? I have Fibromyalgia! Isn't it great?"

Miles had is faults but one thing that was great about him was that he was in it with me every step of the diagnosis process and had researched many different syndromes and diseases. Maybe because he was a Professor of Geology, PhD? Yeah.

"Vanessa, Fibromyaliga is pretty serious, right?" Like, what the hell are you so excited about?

"Yeah I know...But I finally have a diagnosis...And it isn't degenerative, I can't die from it--so that's good. Now we just have to treat it or "manage" it, that's what my doctor said."

Over the next several months, not much changed. It wasn't as though the diagnosis of Fibro made it all better. Of course the medication was some relief. I was getting better rest, but still in pain, a lot of pain most of the time-joint pain, muscle pain, stomach pain, headache pain-it was one thing or another and I was always so tired.

I was on disability, there was no way I could work and I had to fight for my disability. Back then Fibromyalgia wasn't well known, a lot of doctors didn't understand it or they thought it was a "wastebasket diagnosis" because the patient had complaints/symptoms but there wasn't a single test that explained it-but that's not true. Fibromyalgia is a real syndrome, with real criteria on it's own. The problem is that you have to rule out many other illnesses because Fibro mimics many, many others.

These days Fibro is still not well known to most people unless they know someone with it, or maybe have seen commercials for medication to treat it, but still-people don't know what it is or understand it. And depending on who they get their info from determines how seriously they take it.

It's strange because people who have known me my entire life, my friends and family seemed to be the ones who had the most difficult time grasping what it was and how it took over my life and how I could become it's Bitch. Maybe it's denial, I've had it myself. But it's frustrating when people say to you, "You SHOULD get out and go for a walk at least" or "You can't even go to the movies?" They just don't get it. How painful it is, how tired you are...Going for a walk or to the movies or anything else was like asking the average person to climb Mount Everest. "Yeah-RIGHT! I'll get right on that!"

When it even hurts to touch my skin, or it feels like a knife is being plunged into my leg or any other part of my body constantly, or my poo is more like pee, or my head feels like it is in a vice 24/7, or my fingers, hips, knees, ankles ache with pain as though I was 99 years old and they are twisted up with arthritis.

"But you look fine." That's like being punched and kissed at the same time-but mostly punched. It is so undermining to what I'm SAYING about how I FEEL.

I've tried to make people understand, "Imagine the worst flu you ever had, how tired you were how achy you were, how you couldn't do anything. Multiply that by about 500-1,000 and still that's only a portion of how Fibro feels." This explanation doesn't create an AH HA moment or a Light Blub moment for most. But maybe a little night light at the end of the hall. When this explanation is MOST effective is when people actually have the flu and I say, "What you're feeling right now, is a little bit of how Fibro feels." But then they get over the flu, and forget again.

But it isn't as though people with Fibro understand it fully either. Fibro is very bitchy, to say the least. Each day brings different types of issues, more or less pain, more or less energy. There are good days and bad days. There are times when you are kicked down horribly for no reason-meaning that you didn't do anything crazy physically, but your body is revolting. There can be other times when you did do something that very well could bring on angry Fibro and nothing happens...Or it's a delayed reaction. You had a busy day, went to the beach, drove long distances were active and it all hits you 2 or 3 days later. Some days you are really good-almost the person you were Pre-Fibro and other days when it's the worst it has ever been in one way or another.

Alright, I've explained my history and diagnosis of Fibro and a little about what Fibro is. Now it's time to get back to what happened on 5/1/09.

It was the middle of the night and I couldn't sleep, my body was tingling a lot-more than usual...And this spot on the left side of my face, about 2 inches wide going from the corner of my mouth to my cheek and a little below my jaw line that began to tingle 3 days before and was something I don't remember happening in my past-got very tingly.

All of a sudden on the right side of my body from my toes, up my leg, my side, my arm, my neck, my face and half of my tongue got extremely tingly. Like someone turned up the dial on it. Not only that but the right side of my lip became numb, the inside of my mouth on the right side felt like I was shot with Novocaine. My right arm, and finger tips, my leg from the knee down, my toes, the top and bottom of my foot were about 50% numb. This had never happened to me before, and was very scary, I didn't know what was going on.

Somehow, I fell asleep-or passed out. I'm not sure. But when my alarm went off at 7am I could move, I wasn't in pain, I just jumped out of bed and staggered my way to the bathroom. It hit me, my entire body was tingling very much, my right side was very weak and what was numb in the middle of the night still was...But I could get around. I had to get my kid to school, a 30 minute drive and I had to get to work, another 30 minute drive from there. I just did it, I was on auto pilot. Not only that, but because I work at a Veterinary Hospital I had both of my dogs with me and had packed up all 4 of my rats in a carrier too-one of my female rats had a tumor that we removed about 2 months before but she was having so much trouble getting around that I decided the day before that it was time to euthanize her. The cancer was most likely in her brain at this point and her quality of life was not good.

Half way to my son's school I realized that I really didn't feel right. But I got him to school. I had an hour and a half before I had to get to work, I pulled into the Target parking lot and called my Rheumie's office. I wanted to confirm with him that what I was experiencing wasn't Fibro, it didn't feel like Fibro, but I'm no doctor-and if it was Fibro, I should see him ASAP.

He was in an appointment when I called, but I left an urgent message. I didn't know what I should do, I was confused and scared and didn't want to attempt to make it to work if he wanted to see me. It took an hour but finally I got him on the phone and explained to him what had happened in the middle of the night and how I was feeling.

"I've never experienced this numbness before." I told him. "What do think? Is this Fibro? It doesn't feel like it."

"Vanessa, you know it isn't. Nothing about it sounds like Fibro. This sounds Neurological, you need to see your GP and I'm sure he'll want you to see a Neurologist. This sounds like MS or something like it, I don't know but this is out of my realm."

"Well, about 10 years ago they thought I might have MS, before I was diagnosed with Fibro. I had an MRI and LP but it was ruled out."

"But that was 10 years ago, things change. I have no doubt that you have Fibro, that isn't in question-but what you are experiencing is not Fibro, and nothing that I've ever heard of being Fibro related."

"Alright, so I have to see my GP then. Right away, right?"

"Yes Vanessa, NOW."