Flashing Lights, Sleeplessness, Headaches, and More...WTF!!! Now What!!!!!.......

I've been diagnosed with Fibromyalgia for almost 4 years now...
All this time not much has changed except some tweaking of my medication which is why I haven't blogged in awhile. But now I've started experiencing some new symptoms I frankly don't know what to do with.

First it started off with flashes of light. Best way I can describe it is like in a cartoon when someone gets hit in the head and they see stars, except it happens sometimes when I stand up or bend over and is accompanied by dizziness.
Then there was the trouble sleeping. For nights I hadn't been able to sleep. I just thought I needed to take my evening meds eariler but even after changing the time\I still am having trouble sleeping.
Later and more subtle was the fatigue. I would do something simple like go up steps or a hill and it would be an effort. Unlike the fatigue before this isn't constant. Sometimes it happens and other times I'm fine. I can go up the same hill two days in a row and one day it's easy while the next I'm weak and breathing heavy. But that took me awhile to notice cause again it isn't consistent and I'd chuck it up to not sleeping well the night before or possibly coming down with a cold.
Then for the last two and a half weeks I've had a constant headache. I mean non-stop always there headache ranging from a 2 (mild background annoyance) to an 8 (borderline migraine). The pain seems to always be centered around my temples and the back of my neck. When the pains bad so is the pain in my neck.

But the most scary symptom happened two weekends ago....
I had woken up at 3am to use the bathroom when I felt my headache flare. As I was sitting on the toilet I suddenly felt dizzy and nauseous that quickly grew worse at an alarming rate. Luckily my mother was there so I was able to call to her when I felt like I was about pass out. I don't remember much after that except suddenly feeling my strength leave me as my body went limp, my mother being the only thing holding me up. I remember sweating a lot and my mother was yelling at me to open my eyes but all I could do was moan, I couldn't form words. I knew I was coming out of it when I was able to talk again. Once I got a bit of my strength back she was then able to change my shirt which I had completely sweated through and helped me walk to the living room where she sat me next to an open window. It didn't pass quickly and as I was gaining back control of my limbs the weakness I felt was replaced by severe body pain. As if my headache had spread throughout my body. I kept feeling like it was gonna happen again, like I a strong current were trying to pull me under, but I fought it and finally I was myself enough to get me back into my bed.

It wasn't till the next day I found out how close I'd come to going to the hospital.
Turns out when she found me I was white as a sheet, my lips pale, and when she tried to take my pulse she had a hard time finding it. This is a woman who has worked in the hospital for over 40 years, if she can't get a pulse then u know it's bad. When I started to come out of it she was finally able to get a pulse and it was 75bpm.

Since that day I've had moments of feeling like it's gonna happen again and I'm scared. I'll be fine and all of a sudden my headache will flare and I'll get nauseous and dizzy, but it only lasts a moment then passes. I afraid its going to happen while I'm in the street or traveling by myself.

On Monday I saw my general doctor and when I told her about what happened, she took blood, ran an EKG which only showed that my pulse is a bit fast, and ordered an MRI. She's worried that I had some kind of seizure and she said if it ever happens again I'm to go straight to the hospital.
I don't know what I was expecting when I told her, but her reaction scared me even more then I already was. I broke down when I finally got home.

I'm so tired of this shit!! I'm so tired of something being wrong with me!!
Now I got to worry about something else on top of everything I'm already dealing with and its the not knowing that kills me. Its the not knowing what's wrong, what triggers it, what I can do to stop it.

I can deal with a lot of things...God knows I already have...but its when something happens and I can't get a hold of it. I can't grasp it or direct it in some way that I truly get scared.

Tomorrow I'm supposed to have my MRI so we'll see how this goes, but due to the headaches I may not blog about it for awhile.
I'll try to update my blog the next time I have a semi-pain freeday, which at this point is all I'm asking for....

(Photo provided by Phototbucket, hazelpatience, and is directly linked)

Winter is a REAL BITCH!!!

I haven't posted anything in this blog for awhile so I'm due...

I've had some real trouble the last few weeks with pain.
I know its due to the cold, but I'm afraid it also as to do with the medications I'm on. I've been able to somewhat pull myself out of the rut I was in, by exercising at least once a week, but it's not enough.

It's amazing that to maintain some normality with my life and with this disorder, I have to cause myself pain in order to reduce my pain.
I mean... you got to be really strong willed to do that shit!
It hurts so bad to exercise, but I have no choice if I want my overall pain to be less.
No, it never goes away completely. The exercise just reduces it a bit, but I put myself through torture just for that bit.

I went to the doctor the other day to talk to her about the pain and the medication I'm on. I wanted to get off of the Gabapentin, because it never really did much to begin with except give me headaches. I just felt like that was a chemical in my body I didn't need. Plus I wanted to talk about increasing my Savella, which unlike the Gabapentin, has been helping me greatly.
From the moment I told my doctor what was going on and how I felt, she practically read my mind and finished my sentences for me. Turns out I wasn't on the full dose of Savella to begin with and she agreed that it would be best to get off the Gabapentin.
She is truly an Amazing doctor!
Not only did she listen to me but she heard me, and she knew what I was gonna say before I did.
It's not everyday you get a doctor that actually pays attention to you, and gives a crap.

So she told me what to do. I'm reducing my Gabapentin and increasing my Savella slowly over the next two months. When the 2 months are up, I go to see her again, and she checks to make sure I'm handling the change well. If things go well, then we take the next step.

I'm a little worried what the increase in Savella is gonna do to my already heightened personalty.
As it was, when I first started taking it, it was like I was on speed.

I was hyper, I had verbal volume issues, and to top it of that I had mind to mouth filter issues (lol). In other words I was talking real loud or even yelling without realizing I was doing it, and I would say exactly what I was on my mind. It wasn't till I watched a video of myself on Christmas Day not long after starting the medication, where I was yelling profanity's at my cousins cause they hit me in the head with balled up wrapping paper, that I realized I was out of control.
Over time I gained some control over myself again as my body got used to the medication, but I'm still talkative and outgoing. Kinda funny that a side affect to the drug for me would be being loud and outgoing while I've spent my life being quite and shy....lol

So now that the doc is increasing the dose, I'm waiting for shit to get weird again. I do feel a bit hyper, but I have to be really aware of how loud I am and what I say when I speak, cause I don't want another foul mouthed Christmas...lol

(Amazing photo above by sarahmae09, Photobucket and is directly linked)

The Day After Tomorrow...

This is gonna be a short blog since I'm a bit too tired to write.
Since I got back from Cancun I haven't been the same.

I was hoping it was just another flare up but if it is...it's the longest one I've ever had.
Mom thinks it's just that since getting back I haven't had a moment to rest.
Between the cold weather, getting sick, the tests in class, the holidays, and the new guy in my life, things haven't exactly gone back to normal.

I had plans to meet up with friends I hadn't seen in ages, help other friends move, and just enjoy myself, but instead I feel like I've taken a giant step backward, and unfortunately it got worse after thanksgiving.

For instance this weekend I seem to have over booked myself.
Friday I told my cousin to come over cause he needed to talk and he never asks to talk so I know it's something important, plus I was also planning to see my new "guy friend" (whom I call a "guy friend" cause we're not really dating but we're more then friends) in a setting that's not class related since we really haven't had an opportunity to do that yet.
On Saturday I was gonna see an old friend I hadn't seen in over 2 years, and then that night head to dinner with my family.
Then finally on Sunday I was gonna head to my friends new apartment, see if they needed any help with unpacking, and just hang cause I hadn't seen her in awhile.

If I was feeling more like myself, this list of stuff wouldn't bother me, but I'm not myself and I'm beating myself up because I have to cancel most if not all the tings I have planned.
I'm gonna call both my friends and see if I can't re-schedule for the following weekend or after classes finish for the semester on December 8th. I might back out of the family dinner, if I'm not a little stronger by Friday, and I may even have to see my cousin and my "guy friend" another day.

I just feel so frustrated!!
Even my teachers can see I'm not myself. So far I've gone to two classes this week and I've been zonked through both of them. I took a test in science with a migraine, and today I had trouble grasping the math problems to the point of switching around numbers and the meaning in sentences, getting the answers completely wrong. Tomorrow is my reading a writing class and I'm praying that we don't get an timed essay cause otherwise I'm screwed...

I keep expecting to wake up in the morning and have my strength back. I keep hoping that if I go to bed, the next day I'll be fine and back to my "Abby Normal" self...;)
I really hope this month long break we're getting between semesters will help me recover from whatever is going on, because if this isn't a flareup there's only one other thing it could be, and I don't even want to type it for fear that I'll make it reality...

All I got left at this point is hope...hope for the day after tomorrow...(like how I tied it all in...lol)

(Photos: 1st by sissygirl_06 2nd by taminator327. From Photobucket and directly linked)

Fucking Pharmacy!

Let me get straight to the point. I had my first experience of withdrawal from Savella...

The end of August was madness for me as I've written in my other blog, so I forgot to inform the pharmacy that I was going to be needing my refill. By the time I did remember, it was Saturday, I had one pill left, and pharmacist I usually deal with wasn't there. To add insult to injury, the asshole who was covering her wasn't polite about pointing out how I should have called earlier and that there was nothing they could do.
So I was stuck without my medication until Monday.

But how is it I have to tell them I need a refill so they can order it?
One of the symptoms of this disorder is memory problems, and they want me to remember to remind them?...
Plus shouldn't it be in stock?
They know I pick up my medication without fail, they should know that I need to take this medication regularly, that it can't just be stopped, and that I most likely will be taking it for the rest of my life, so why can't they just order the medication ahead of time instead of me having to remind them to do it...
I should be getting paid, cause from the looks of things, I'm doing there fucking job for them!

Ohh!!!! It get's me soo MAD!!...but I digress....

You have to understand, Savella is not a medication you can just stop taking. You have to build up to a dose and taper off. You can't go cold turkey because it would wreck havoc with the chemicals in the brain.
I called another Pharmacy and the person I spoke to still couldn't help, but at least he was polite, explained why he couldn't help and what my options were.
Since I now have medicaid, prescriptions are no longer allowed to be transferred from one pharmacy to another. Wherever I handed in the prescription is where I have to pick up the medication.
He also told me to take my last pill and cut it in half.
That way instead of going without the medication all together on Sunday, I can do a half a dose Saturday and half Sunday to try to keep me somewhat level.
This is all information that the pharmacist at my place SHOULD have told me, but I guess that guy couldn't give less of a shit.
So I did what he said and began my weekend without my life line.

I didn't know what to expect.
I was hoping that maybe I didn't need it anymore, that I'll be fine without it, but that dream didn't last two seconds before it was dashed against the rocks.
I swear, half way through Saturday I felt different.
My head  and neck started to hurt, I started to get stiff, I couldn't sleep, and by Sunday I was sore all over, and couldn't sit in one position for more then a minuet.

Can we say Deja Vu...

I knew this medication worked fast but not that fast.
I thought maybe it was in my head, but I was feeling it without even thinking about it. In fact I didn't even notice until I realized I kept shifting my position in my chair every few minuets. When I first started the medication it took a week for me to start to feel better, but it only took 24 hours for me to be trapped back in my own personal hell?
I thought maybe it was the withdrawal, but most of the symptoms were almost exactly as I remembered them.

I got my meds back on Monday, but the damage had already been done. It's been almost 2 weeks now since that weekend and I'm still not 100%, but at least everyday it gets better.

Hopefully I wont have to go through that again, but I know one day I'll have to try, just so I can see if I can have a life without being on meds, but after this little event, that wont be any day soon....

(Photo courtesy of Photobucket)

Hope on the Horizon...

I couldn't agree more with the picture on the right, but I am beginning to waver in my conviction.

On the 9th I saw my new "Health First Approved" general practitioner, and I'm surprisingly optimistic about the future.

The office is located in a hospital, so as one would expect, it was very busy. Full of people who have landed on hard times for one reason or another, mostly lower middle class people of ethnic backgrounds or elderly. Basically hardworking people who can't afford medical insurance on there pittance of a salary. But scattered among the crowd, more then I've ever seen before, were those few who this was a completely new experience, who once had money but now had to rely on government aid.
You could tell who they were because they were the most uncomfortable, the most unhappy about having to be there, and had a tendency to be rather rude.

Though the place was busy the staff were amazing. They moved like a well oiled machine. Everyone knew there job and did there job without complaint, all the while being polite and friendly. But I got to say, the nurses were my favorite part of my visit.
Women who are hard working, experienced, abrupt but friendly, yet don't take any crap.
My kind of nurses.
Maybe not the most professional, especially when the one who calls people to the back makes jokes about if you don't hurry shes gonna leave you behind, but you could tell there was no malice to it.
They took my blood with experienced steady hands, and though I may have felt rushed, I never felt neglected.

As for my new doctor, Dr. Blank, though very business like, and a bit overwhelmed with all the medical info I had to give her, never made me feel like a child, like I was less then or beneath her in class. Doctors have a tendency to display a classic arrogance of position, and not once did I get that from her.
She listened to everything I had to say and spoke to me like I was an intelligent human being, never belittling any of my concerns, and suggesting avenues to move forward with aspects of my health that had yet to be addressed.
When we got to talking about my Fibromyalgia, she never made me feel like she didn't believe me, even suggesting physical therapy which is something I've been trying to get for over 2 years now. She even paid attention to the little things like asking me about my exercise routine, what I'm doing, and giving me some tips and advice to help me with some problems I've been having.

So I hate to say this, cause I'm afraid it's gonna come back to bite me in the ass, but I think I might have found a good doctor. Go figure I had to go through all this shit, all the bad doctors and insurance issues in order to find a doctor that can actually help me.

I'm beginning to feel HOPE bloom in my chest, and it's scaring the shit out if me....lol

(1st photo by IrethWaverly, 2nd photo by girly-girl-graphics, both provided by Photobucket and directly linked)

I Wanna Gnaw My Leg Off!!!

Once again...I'm stuck waiting for another flareup to move through before I can get back to my routine again and it's driving me fucking BatShit crazy!!!

I don't want to stop exercising, stop moving forward, stop getting my life back, but every once in awhile I don't have a choice, I have to be still.
If I kept moving, the way my mind is screaming at me to do, I could hurt everything I've worked so hard for, I could end up doing more damage then good and end up being immobile for much much longer. I know right now I need to let my body recover and that this feeling of pain and exhaustion is just temporary. But instead I feel trapped, throwing logic at myself to keep me calm, but like a wolf with it's leg caught in a trap, all I can think about is gnawing it off.

Though my body is still, my mind is wide awake, telling me all the things I need to do, whispering all the fears that have been lurking in the back of my mind just waiting for me to be still enough to hear them.
I know I worry too much, and think too much about things, but I don't know how to change that other then to get a new brain, and the last time I checked, Dr. Frankenstein doesn't live next door.
So I focus on priorities which helps me to see things more clearly, and keeps me occupied just long enough for me to get through the time delay, and before I know it, I'll be back on track.

But it's the wait....

The incessant ticking of the damn clock while I do nothing.... That's what's making me nuts!
I've learned to deal with much in my few 29 years on this earth, probably more then most people will ever know, but having to sit back and feel useless is one of those things I haven't mastered yet.

But much like all things...this too shall end, and I'll be working on getting my life back in no time...

(photo By skyysdalmt, provided by Photobucket, and directly linked)

Update (Things are Looking Up!...**knock on wood**)

With some help I've found a General Practitioner that takes my Insurance....HURRAY!!

Her name is Dr. Blank (no really...that's her last name...lol) and she works out of the same hospital that my Rheumatologist Dr. Rackoff works out of, so that should help with getting my new doc all my old records.
My appointment is for August 9th but I'm panicking about the appointment. I'm worried she's gonna be one of these idiot doctors that doesn't listen. I'm worried that I'm not gonna remember everything I have to tell her (2 years worth of crap).
Granted I've kept files and notes, making sure to scan all my test results onto my computer for save keeping (yep I'm that organized) but I'm still worried I'll forget something. I need this appointment to go well so I can get the referral I need to go back and see Dr. Rackoff who's been treating me (insurances making me do this), but I also need this appointment to go well for my state of mind.

The Sevella is a GOD send and without it I wouldn't have my life back. It's a struggle every day but thanks to this drug I've been able to get back to a semi normal life. I'm so scared to fall back to where I was. It was like a living death compared to how I'm doing now. I'm not 100% and I my body still reminds me from time to time what my limits are, but right now if I continue to work on getting by body back into working order, I can have a semi-normal life.
That's all I want....a semi-normal life...

(photo thanks to Photobucket and is directly linked)