Phase 5? 6? I'm losing track...

I talked to Dr. Park yesterday, as suspected-the Radiologist said that unless there was a huge hemorrhage in my brain-the MRI wouldn't show it...And I'd probably be dead anyway.

So we are going forward with having the MRA done.

I asked Dr. Park if this referral would go through as "standard" or "urgent" because I've had issues with this, the time frame of "standard" is about 5 days and the time frame of "urgent" is 1 day. Dr. Park said that he would do it as a standard referral-he didn't think this was an emergency-if anything-I have a "slow leak" and if it was anything more, something would have happened by now. That's comforting. I told him how I realized, after staying off of the Clonazapam, and not getting knocked out-my head hurts worse when I lay down, how I cannot go to sleep without taking the Clonazapam-to knock me out because of the pain and I find myself with my head tilted off of the bed whenever I wake up. It was a miserable weekend, and I was scared.

But, I told him that if he's not worried about this enough to have the referral done ASAP, then I trusted him. And I told him that the Tylenol 3 helped with the pain I was having during the day, but obviously the pain that I was having at night-when I lay down is too much and the Tylenol3 doesn't help. I needed something to help me sleep. He called in Ambien. Awesome, Ambien rocks.

I reminded him how a standard referral takes 1 week and, like it happened with my MRI, I had to wait a week to get an appointment. He said that he wouldn't let that happen, that I would hear from him towards the end of the week and he would make sure that the hospital gets me in for the MRA ASAP, so I wouldn't have to wait two weeks. Apparently I would have it done at the hospital, not where I had the MRI.

He said I would hear from him later in the week and we would set it up.

Oddly enough though, I woke up this morning to a voice mail from the Imaging place calling to set up my MRA. I thought I wouldn't have it done until early next week-at the hospital-and the Imaging place called me today. Weird.

Anyway, I have my appointment for the MRA on Thursday at 4. I made an appointment to see Dr. Park on Monday at 2.

I'm glad that my doctor isn't letting time drag on, that he wants all of the pieces of the puzzle. Yes, I'm grateful for that. I have a feeling though, that after having the MRA isn't going to make my head hurt any less-for one reason or another.

OK, off to watch baseball. Did I mention that my head hurts?

The Conclusion-But Not Really

I started to write the rest of what happened after getting into the ER. I didn't get very far. I've found that thinking of all of what has happened-just health related (not counting how my job is involved, how this has affected my son, my relationships with other people & my finances) is just details that I would rather not get into-and the details are unimportant. If I am going to spend my energy writing, I don't want to spend it on those details.

But I don't want to delay getting to real-time any longer. And when I think we've figured things out-with what that attack was-we continue to be unsure.

So, this is the low down.

At the ER things progressively got worse. It was getting more and more difficult for me to talk and eventually I had no strength in my right arm, the left side of my mouth was pulling more than it had before and it got really scary-the base of my head was killing me. It felt like someone had two huge fingers pushed into the base and pushed up into by brain stem. That didn't seem to concern anyone. They did a CT right away to rule out a brain tumor or stroke. The CT was fine. It didn't show signs of either. They didn't know what was causing my symptoms. The doctor there consulted with a Neurologist over the phone and they decided that I could go home but they wanted me to see the Neuro on Monday, it was Friday. But they told me that if it got worse that I should go back to the ER ASAP. He wrote me a note for the rest of the weekend saying that I could go back to work on Tuesday.

Because of referral bullshit due to the Robot doctor that I had seen before going to the ER, and the referral going through under "STANDARD" status, I wasn't able to see the Neuro for possibly a week. Obviously this was very upsetting and I made an appointment to see my usual GP, Dr. Park the next day-Tuesday 5/5/09.

I told him all that happened, and he wasn't sure what was going on either. At this point my mouth was still pulling to the side, I was still very weak, tingling was still there but had subsided a little bit, but my right leg was still numb and so was the skin on my arm. I was still having a difficult time talking, but not as much. I was about 30% better over all that day. At first he thought that maybe it was MS, but when I told him that I had an MRI and LP done about 9 years ago and they were normal & inconclusive-he dropped MS idea. His second thought was that maybe I had an anxiety type thing going on and I hyperventilated. I told him that I never did. He said that I could have without knowing it, and lack of oxygen would cause the issues I had. But he didn't see me at my worse on Friday when I was at the ER. I told him, respectfully that I thought he was wrong, but if he was correct-what would we do about it? He said I would take an anti-anxiety med and if I was breathing improperly the medication would calm me and I would begin to feel better within a day or two. I decided that I would give it a shot, even though I knew that wasn't my issue. While I was there, Dr. Park's assistant worked some magic and got the referral pushed through while I was there. Dr. Park wrote me a Dr's note to be off work through that week-so I wouldn't have to go to work before seeing the Neuro. Oddly enough I was able to make an appointment for the next day to see a Neuro.

5/609-I told the Neuro everything that happened. He asked me what my other doctor's had thought. I told him that my Rheumie thought MS and so did my GP, at first. The Neuro-we'll call him "Dr. Absent" said that didn't agree. He thought that it was a Migraine Phenomenon. I told him that I didn't have a Migraine when this happened. He explained that you can have a Migraine and not experience a typical headache. That the Migraine can cause "stroke-like" impairments. The impaired speech, numbness, tingling, facial pulling, etc. But he ordered a Brain MRI and a Nerve Conduction Study to make sure, and he said that he didn't think I needed to do an LP-just yet. I must have made a face to the thought of the LP, and I told him that I had done one years ago and that recovering from it was horrible and it was inconclusive. He reiterated that I didn't have to do that-at this time.

5/8/09-I woke up to double/blurred vision.

I had to wait 2 weeks to get the MRI due to the referral process and getting the first available appointment after it was approved. And I would have to wait until 5/29/09 for the Nerve Conduction Study.

It was in the third week that my Fibro reared her ugly head. My Neuro put me on steroids, after being on a Migraine medication for two and a half days and my symptoms didn't get better besides slightly less sensitivity to light. The day after my first dose of the steroids I woke up with Fibro pain in my legs. For the entire time up until then I hadn't felt "Fibro-y" at all. I don't know if the steroids did it, or the fact that I had a very hard time sleeping after I took them. Sleep is very important for people with Fibro.

Once she got her, Fibro that is...She got here if full force. It's the worst it has been in many years. So, aside from dealing with the issues that the unknown attack left me with, I also had to deal with pain and fatigue that brought me back ten years. To say that things have been difficult is a major understatement.

I had to take the month of May off with Medical Leave and I applied for Disability Insurance Payments.

I had the MRI on 5/15/09. The results ended up being "normal".

I had the Nerve Conduction Study on 5/29/09 at the Neuro's office and that was "normal". He also did a EMG, that's where they stick a needle in your muscle's. I got stuck in my arms about 20 times. With the Nerve Conduction Test-being shocked about 30 times-at least and then the needles...Well, it was probably the worst thing anyone can have done when they are in the middle of a very bad Fibro Attack.

The Neuro said that since all of the tests came back normal, there isn't anything Neurologically wrong with me. Basically-there's no evidence that I have MS. He had no answers to all of the symptoms that I was experiencing. He brought up doing a LP, but I told him AGAIN how I had one years ago and even if O-Bands showed up, it isn't enough to diagnose me or treat me with medicine. What's the point of going through THAT torture? None.

He said he would send all of his reports and findings-advising my doctor that I should see an Endocrinologist. He never went back to his original first guess that I had a Migraine Phenomenon. I suppose it was because two and a half days of Migraine medication didn't make it all better and I was still experiencing blurred vision. This didn't seem to bother Dr. Absent. He ordered an X-Ray of my neck, since the pain in the back of my head and top of my neck was still there, and some more blood work. Aside from that, he was done with me. And, I was more than done with him. His office was horrible-the staff there were the most uncompassionate people I think I've ever experienced in my entire life. This "Doctor" wasn't much better.

6/1/09-I saw my Rheumie to discuss treatment for my current BAD Fibro attack. I had been on Lyrica for about 3 months taking it once daily. He decided that I should take it twice a day and see how my Fibro responds to it. He wouldn't give me any other medication. I would have to suffer with the pain. We didn't want to confuse what was helping or giving me side effects if I was on more medication than the Flexeril, Lyrica and Meloxicam-meds that I had been on for a long time. Would adding another daily dose of Lyrica cut through my Fibro attack and would I be able to go back to work in the next month? We'd have to wait and see.

6/2/09-I saw my GP, Dr. Park to discuss where we were at that point and the issue of my eyes bothering me so much. I got advice from people on the website, Patients Like Me.com that I should see a Neuro Ophthalmologist. Dr. Park was very concerned that I was having vision issues, got the referral to the eye doc ASAP, and I was seen my the eye doc the next day. Dr. Park also ordered MORE blood-work.

6/3/09-The eye doctor didn't find anything wrong with my eyes. In fact, my RX that I have for my glasses now-the same glasses I've had for about 5 years-hasn't changed at all. I was totally baffled by this. How could I wake up one morning-a week after the attack-and have nothing WRONG with my eyes? "I don't know." he said.

So, with the MRI, the Nerve Conduction Test and the eye doctor saying that my optic nerves were, "Perfect" I was finally ok with where we were diagnostically and moving on from the issue of MS.

I spent a lot of time trying to figure out all of this. I couldn't help but go back to the Neuro's first idea. Migraine Phenomenon. Why did he let that go? Because I took a medication for a couple of days and it didn't make me all better?

I decided that I needed a new Neuro to evaluate everything and get their opinion on the Migraine issue. I've had headache/migraine issues my entire life. I did the research on Migraines and what happened to me on May 1st was spot on to a Silent Migraine. I didn't want to go back to Dr. Absent, or any other doctor in his office-I never wanted to go back there again. Oh, and I finally found out-a week later when I had to call his office to find out about all of the lab work that he had done. All of it was "normal", "He would have called you if anything was wrong with it." Awesome-you people SUCK!

6/5/09I talked to Dr. Park about the lab work he ordered, it was all "normal". I told him that I wanted to see another Neuro to go over everything and start a Migraine treatment. He said that I could see one of the other doctors in that office, but I didn't want to do that. We went over everything and my thoughts on it being the Migraine thing, and wanting to get on treatment for it because it was so bad and it set my Fibro off-I needed to start taking whatever meds I had to to fight off another Silent Migraine or any other type of Migraine. Dr. Park agreed that it does sound like it was the Migraine thing and said that if that's all I wanted to see another Neuro for, that he could treat me himself.

That sounded great, I hate Neuro's and if he knows enough about treatment-awesome. The only problem is that he was going to be gone for the entire next week.

My vision continued to be blurry. I started to look up all oft he medications I am on and see if blurred vision was one of the side affects. It is with Lyrica. But I've been on Lyrica for months. I wondered if it was the new med that Dr. Park gave me for anxiety-Clonazapam-at the beginning of the month. I looked up the side effects, and blurred vision was listed. The time frame fit perfectly to when I started the medication to when I woke up with the blurred vision.

I decided to stop taking it and see what happened. I only took it at night because it helped me sleep, and with all of the pain and discomfort-I needed to be knocked out in order to sleep. After 3 nights of not taking it, I woke up to much improved vision. By the 4th night of not taking it, my vision was pretty much back to the way it was right after the attack-difficulty focusing, but not blurry. It was the medication that was the issue. Go figure. The medication that my doctor gave me to help with anxiety actually CAUSED a lot of anxiety. So ironic.

However, I was having a very hard time falling asleep. The back my head, that same area that I've been having pain-with the feelings of fingers and pressure up in my brain has not gotten better and I realized that not taking the Clonazapam didn't knock me out enough to be able to deal with the pain in my head. As the days went on without taking it, the worse it got. After not taking it for 4 nights brought me to the morning I had my appointment with Dr. Park.

5/12/09-Friday, I had been having horrible allergies all week along with EVERYTHING else. I felt horrible. I hardly slept the night before because of my head pain, the back-fingers in my brain-and the front-allergies. Dr. Park walked into the exam room and asked me how I was. I think I just made a noise. "Not good huh?" he asked. "No, not good." I said.

First I told him about my experiment with the Clonazapam. Then I told him about the head pain. We went over all of the diagnostics that I'd done over the last month. Dr. Park asked me if Dr. Absent had me do an MRA along with the MRI. I was sure he did not-I had never even heard of an MRA. Dr. Park said that he was sure Dr. Absent would have ordered one, since that's what Neuro's do in cases such as mine. However, upon digging in the computer, he found that we did not do an MRA. Dr. Park was concerned about this, and with me having the pain in the back of my head. Bottom line-he wanted to make sure that I don't have a leaking blood vessel. That I didn't have a Brain Aneurysm, that I wasn't continuing to leak blood. He had a patient like me years ago-same age-same issues-Brain Aneurysm. He just wants to make sure that isn't what's going on before starting me on Migraine Treatment.

Obviously, this is concerning. In so many ways. Why hadn't this come up before? Why wasn't an MRA ordered? Why was my Neuro-"Dr. Absent" so fucking ABSENT and PASSIVE in my treatment?!? What the FUCK?

He wanted to discuss the MRI vs the MRA with the Radiologist, see if the Radiologist could look at the MRI and see if he could diagnose blood vessels. He is going to call me on Monday to let me know what the Radiologist says and most likly, order the MRA. In the meantime he gave me Tylenol 3 for the pain, he wanted to give me Vicodin-but I don't like it, it makes me nauseous.

The Tylenol helped, it took the edge off for the rest of Friday. However, I could not sleep. My head was killing me, even to lay on my back with my head on the pillow hurts, to lay on my side hurts, to lay on my stomach hurts. Finally at nearly 5 AM I took a Clonazapam. Passing out, getting some sleep was worth blurry vision-if it happened with one dose.

As I write this, I wonder why I didst push Dr. Park to talk with the Radiologist that day, to order the MRA that day. Why wait for Monday? I don't know, I guess I was sleep deprived, in pain and miserable with my allergies.

I sat up in bed, right after I took the pill and realized that my head didn't hurt as much when I sit up. I found that interesting...And passed out. When I woke up, I was very aware that it was another morning in the last few weeks that I am laying sideways in bed. With my head halfway hanging off the side. Why is it better when I'm up-right? Why do I wake up with my head hanging off the bed? Why is it worse when I lay down?

I called Urgent Care to see if Dr. Park was possibly working there this weekend, but he wasn't. I'm not experiencing anything different than I had, but it's obvious that the pain in my head is serious enough that I can't lay down without being drugged out.

It's nearly 6 AM on Sunday morning 6/14/09, and I've been up all night. Scared, mostly to find out that the pain is worse when I lay down. Scared to have to take another Clonazapam to knock myself out. Frustrated that this mystery continues...

Tired.

*Intermission* 6/6/09

Those last two posts have taken many days-if not weeks to write, first to figure out if I wanted to tell this story, how much to tell...And then to write it in my condition.

For those of you wondering where I've been and why I haven't been writing, this story will continue to explain it all. I've decided that it is important for me to write it, for myself...And events have taken place, and questions have been answered to a point to allow me to.

I will continue to write it, as energy permits.

~V~

I Feel...Weird...(Part 2)

I called my GP's office and he was out of town. Of course he was! Damn it!

I explained that I needed to see SOMEONE right away and what was going on. They set me up with an appointment in 30 minutes. I could make it. As I drove back in the direction of home, and the Dr's office I thought about all of my pets in the car. I couldn't leave them in the car when I went to the appointment, it was going to be a warm day and I had no idea what would happen or how long it was going to take at the appointment. I decided to take the babies home, and just as I did-as I drove on the freeway I got a headache unlike anything I ever felt.

All of a sudden on the very top of my head it felt like a huge needle cut through my skull and injected an anesthetic that slowly seeped down the side of my head, only the right side, all the way down, past my eye, my ear, down to my neck. It hurt and felt so weird-but it HURT. All I could think was, "Please don't let this get worse while I'm going 75mph, keep your EYE-the left one-on the road...Steady, steady." I don't think that if it wasn't for my experience with ice-pick headaches I could have stayed on the road, or kept from crashing. The pain and sensation lasted about 20 seconds and then slowly dissipated.

I got the babies home and I made it to the appointment 10 minutes late.

It didn't seem to matter...This office was clearly very busy and far behind. Swine Flu. People were crazy. My appointment should have been made for 11:30 instead of 10:10. I had to sit there in the waiting room as I felt worse and worse. Finally I got into an exam room, after the nurse left me I laid down on the table. I'm not sure how much longer I had to wait for the doctor, but I think it was about 30 minutes.

He came into the room and I could immediately tell that he was not Dr. Compassionate. I told him all that happened and how I was feeling and how I was numb, tingly, weak, pointed out how the side of my face was pulling.

"Do you think you had a stroke?" He asked me.

I was shocked at the question. "That never occurred to me" I said, confused.

"I don't think you had a stroke. Your blood pressure is fine."

"OK, well SOMETHING is going on. I have Fibro, talked to my Rheumie and he said it sounded Neurological and that I should see my GP to get a referral to a Neurologist maybe it's MS or something."

"Yes, I think you should see a Neurologist. I will put a referral in."

"Can I see one today?"

He looked at me like I was crazy.

"No. It doesn't work that way. It will take a few days."

"A FEW DAYS??? Are you kidding me? With what I have going on?"

"Well, if you think it's "THAT BAD" I mean, you're the only one who knows how it feels to you-then you should go to the ER."

"Well, YEAH obviously something is very wrong and I DO feel that bad."

"OK then, you should go to the ER."

This doctor was a complete asshole, no expression on his face and he blinked at me like a robot. He didn't do any type of exam on me but gave me advice, "Go to the ER if it's that bad." I wished my GP was there...

I made my way back to my car, slowly. Luckily the Dr's office is only 5 minutes from my house. I called work again to give the update, I was going to the ER. But I was going home first, I needed to change, wait...I needed to not be driving, I need someone to take me. On the way home I called a couple of friends, got voice mail...Broke down crying on both, "I need to go to the ER, please call me back ASAP...." click. Oh God...What now???

I was tired, so tired...I was up mostly all night, my body was doing something I never experienced, I knew I had a long day ahead of me at the ER, not only for all that may happen but this was May 1st, and SWINE FLU was getting A LOT of buzz-the ER would be a joke. I waited for calls back and I kept touching my numb skin, biting my numb lip, feeling the left side of my mouth pull. What the fuck was happening? Was MS finally striking? Was this something else?

Urgh, the ER. I hated going to the ER and being in the hospital in general...It had been many years since I've had to be. After my bouts in the beginning of my road to figure out what was wrong, before the Fibro diagnosis-I was taken to the ER a few times-when I couldn't move. When it always subsided about 12-24 hours later and when "they" would tell me that they couldn't find WHY this would happen and after I knew I had Fibro when those bouts of not being able to move due to weakness and overall tingling would happen I would NOT go to the ER. There was no point. I knew it was my Fibro, and it would eventually get better and I'd much rather be at home than being in the hospital. I hated it.

I'd even tell my boyfriends over the years-if I could feel that sort of Fibro attack coming on-"Now, if it gets to the point that I can't move, that I'm very painful or whatever-I know it will be scary to you and maybe freak you out, but it will go away and you MUST promise me that you WILL NOT try to get me to the hospital." Reluctantly, they would agree.

But this time was different, this time I was numb and my face was pulling and it was freakin' me the FUCK OUT! This time, I needed to go to the hospital.

It didn't take that long for my friends to call me back, Carmen would have to be at work until at least 4 and it was around 1pm at this point. I really didn't want to wait, but I didn't have a choice. Carmen suggested that I try to sleep since I told her that I was up all night and very tired. But I knew I wouldn't be able to. My other friend Cyndi called me and she would be able to get to me within 45 minutes. I decided that I wouldn't wait for Carmen. Cyndi was on her way.

Cyndi was obviously rattled when she saw me and I talked to her.

"Do you see...my mouth pulling?" I was talking slow and it was hard to form words.

With tears in her eyes she nodded. "Yes, V---maybe it's a stroke?"

As I was getting my shoes on Cyndi got a call from her friend Penny. I had to concentrate so hard on what I was doing I didn't really hear their conversation.

"That was Penny. I told her what's going on with you and she said it sounded like a stroke too." Cyndi said with more panic in her voice.

"The asshole Dr. didn't think so...Never occurred to me either...I don't know...Maybe MS...Let's go." Damn, I was so out of it-I felt kinda buzzed, but not in a fun way. Doped up? Yeah, maybe that's a better description. It took much effort to walk, making sure I had my right leg moving and foot raised so I wouldn't trip over it, holding on to walls and such to keep my balance because it was way off-my right arm was not working and I didn't even try to get it to.

I didn't know how long I would be in the hospital, but I knew I wanted to be comfortable-as much as I could anyway. I put my super soft hot pink robe that I used more as a blanket on a nightly basis into my reusable Trader Joes bag. I'd take it to the movies with me if I didn't look like a complete nut job and it wouldn't get all nasty from God knows what on the seats and floor. Ahhhhh, "The Movies" I wish I were going THERE.

I made it to my car, she would drive my car because she hates people in her truck due to all of the dog hair and "yuck". She has her own business of dog boarding and training.

Luckily the hospital is just about 10 minutes from my house. We both had scared nervous energy and we didn't talk about the matter at hand, but rather the last dramatic event with my family. I hadn't spoken to my father, mother or brother in months. No, they weren't called.

As we pulled up to the emergency entrance we noticed valet parking.

"Should we valet it?"

"Holy crap...Just like Hoag...Yeah, valet it...I can't walk now I think..."

"Do you want a wheelchair?"

"Yep."

I was helped into a wheelchair and took in the surroundings. Men, women, children, babies...They all had masks on. Yep, we just drove up to a scene out of "Outbreak" where was Dustin Hoffman???

Cyndi looked around too, then back at me slumped in the chair-resting my head in my left hand.

"Seriously?"

"Pig...snot" I said, and we hadn't even made it inside the hospital yet. These were just the people standing outside.

"Alright, lets get you in there."

When you can't walk, and you need a wheelchair-hospital staff tend to pay more attention to you. I believe this would have been the case if it weren't for all of the freaked out people in masks pushing the ER to the limit.

We were quickly approached by a very young man I can only describe as the "ER Host" much like a restaurant "Hostess".
I can't clearly remember how the conversation went but the young man asked Cyndi if I was there because of the Swine Flu. She quickly scoffed that off and told him that something was wrong, like a stroke or something and she was instructed to fill out paperwork.

She asked me questions and filled out the paperwork.

"Cyndi, is my...eye pulling...now too?"

She didn't want to freak me out I think, but it was obvious that she was very alarmed.

"Yes. Now your eye is doing it too." And she looked around the room, the chaos that surrounded us. And she wasn't going to let it hinder our progress in getting me seen ASAP.

"I'm going to go make sure that they know what's going on with you and try to get you in there...Because I do not want THIS CRAP (and she motioned to the masked people) hold you up. You need to get in there NOW. Are you ok with me getting in their faces?"

Truth be told, I was glad that she was the way she was because I know that there's not many people who would have the balls to cut us through the Swine Flu.

"Totally, go." I said.

And she was off.

I closed my eyes. Tried to think of anything, anywhere other than where I was. I opened them again and saw a man walk by me. Blanket wrapped around him, mask on, eyes huge and scared. I read his mind when he looked at me, "Look bitch, I was here first and clearly I need to be seen first too."

"Fuck off, you big baby. You don't have the fucking SWINE FLU!" I thought, and closed my eyes again. Disappear fucker, just disappear.

"V?"

I opened my eyes.

"OK, I told them what was going on with you and that you have something neurological going on or maybe a stroke and you need to be triaged ASAP. So, I'll give it about 5 more minutes before I get up and go back, ok?"

"Yeah...Sounds good...Thank you..."

We moved us-purses, bags, slumped over Vanessa in the wheelchair into the triage waiting area.

It was hard to keep my head up and as time went by I felt less and less like myself, and more and more weak and confused. This wasn't Fibro, I don't know where she is-but this isn't her.

There was a woman with a very cranky baby sitting near us, worry in the mother's eyes. Panic. She's done everything she thinks she should, it didn't work, baby is sick.

I read her mind, "We're here baby, we're in the hospital...We just need to wait. You're ok baby, you're ok. Please be ok, please take us soon."

"I'm sorry mommy and baby, I'm going first. They'll take me first. But you'll be ok."

Cyndi looks around, assess the competition.

"You'd think that someone with your symptoms would be a lot more critical than people thinking they've got the fucking Swine Flu." She didn't say this in a whisper, nor did she say it loudly enough to be obnoxious, but to me in a volume that people could hear, if they were paying attention.

"Seriously" I say, and I look at the mom and her baby. Baby didn't react to what Cyndi said but mommy did. Stiffening up and holding her cranky baby tightly as if we were threatening to discard of her young.

"I'm giving it another minute or two, then I'm going back up...You don't mind me being all up in their faces do you?"

"Fuck no. You're...awesome." I needed her to be exactly who she was.

"Good, I'm not one to just sit around and wait when it is clear that you need to be seen and not wait around while they sift through this shit."

"VANESSA"

Cyndi didn't react to my name being called. I think she was in serious thought and process of how to proceed in the pushiness she was going to unleash on these people if I wasn't called.

"VANESSA?"

"I think they called my name."

"VANESSA!"

"Oh, shit. Yes, here...Right here." She jumped up, turned my wheelchair around and moved towards the very confident, irritated, yet tiny Asian woman.

"So Vanessa, you're experiencing numbness and tingling?"

"Yes...on my.......right....side...mostly....but it's also.....on my left side...and..."

"And her face is pulling to the left. She's weak and she's having a hard time speaking, obviously." Cyndi helped

It was getting more and more increasingly difficult to talk. My tongue felt weird, the right side of my mouth was numb and the left side was pulling. But that really wasn't why it was hard to talk. I was having trouble thinking of the words and then saying them.

They made me get up off of the wheel chair to weigh me, and they had to support me. When I say MADE me, is because I knew I would have trouble standing, my legs felt way too strange and besides, I just weighed in at Jenny Craig 2 days ago, I told her how much I weighed. But that wasn't good enough, she wanted to see it for herself. Fine. Bitch. Just because you weigh 2 pounds, you don't have to be a scale nazi.

They rolled me up to a station where they took my temp, my blood pressure and asked some questions...I don't remember what.

"Alright, well...Let's go. I don't know what's going on with you, a stroke would be all on the same side...I don't know...We'll see..." Tiny Asian Nurse said.

And then the doors to an alternate universe opened. I was officially in the ER.

To be continued...

"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."