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)

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)

Medicaid, Heath Plans, Doctors....Oh MY!!!

So since my insurance did a last minuet disappearing act (probably due to some cooked books), I was left with no other choice then Medicaid....

If it hadn't been for my friend Serena (whose blog The Bipolar Bible is an excellent read), I probably would still, as of today, be without insurance....

She showed me that taking government help is nothing to be ashamed of....
She helped me to ask myself honestly why I didn't want to get Medicaid, and after taking a hard look in the mirror, I realized that it was my pride that was holding me back.
Feeling like if I took the help, it meant I had failed somehow. Because of my pride, I was digging a deep hole of dept that was not only pulling me down, but the rest of my family as well, and when I faced that, I knew I had no other choice.

Admitting that I need help is a difficult thing for me to do....
I've always been a loner, keeping my personal life very close to my chest, and if I had a problem, I HAD to fix it myself. But over the years I've learned to let go of my need to control things. The world isn't gonna end if my day doesn't go as planed, or if I need help....

It's funny but having Fibromyalgia has been a blessing in disguise in that it made me have to ask for help whether I liked it or not. I've had to rely on the people around me for help and I had to trust that if I was open about what was going on, that they would understand why I needed that help.
Granted...I lost some people along the way. People I was close to who for whatever reason couldn't be there for me. But they just showed me how truly special the ones who stuck around are.

So now I'm a card carrying Medicaid member, but with that comes some problems....
I've had to go through my Rolodex of doctors to see who takes Medicaid, and guess what...
Most of them don't!
I did however find out that my Rheumatologist takes a Medicaid supplemental insurance called Healthfirst, so I sighed up with them, that way I can continue to see the one doctor who diagnosed and is treating my condition.
But here's the snag....
In order to see her, I have to get a referral from my primary doctor, that I don't have cause my primary doesn't take either Medicaid or Healthfirst...

Woopty Do!!

So now I have to find another primary doctor, make an appointment, catch them up on everything that's been happening to me in the last 2 1/2 years, hope they're not only smart, but quick and can think outside the box, then get a referral, and finally go see my Rheumatologist who I was supposed to see months ago for my followup visit...

At this point...I have yet to find a good Primary doctor...

Crisis, Frogs, Bitches, and Swords!!

Much like the frog in the pot, I didn't realize I was being cooked until it was too late....

So...who would have thought blue fingers would have been a warning...Ha!
Obviously I didn't... which is why I was so surprised when I realized my Fibromyalgia symptoms had made a return.

Granted...it was slow in showing itself.
I had been more tired lately, not wanting to exercise, but I figured that was just because I was bored with my exercise routine and because I wasn't sleeping.
Then there was the coldness.
I was freezing all the time, even when it was in the 70's. So cold, that finally my fingernails started to turn blue, but still I didn't think Fibro.
The aches and pains I felt I assumed were the results of the exercise, or of being cold so often...

Red flag... after fucking red flag... creeping up on me the same way it had over 2 years ago...
but what do you think made me finally realize what was going on...

I went to take a shower, and when I went to wash my hair, I couldn't hold up my arms but for a min....
Doesn't seem like much right?... but for me it's big...

When my Fibromyalgia got real bad, one of the things that I could no longer do was take long showers. Between the dizzy spells and the exhaustion, it wasn't safe. So my showers were reduced to the most basic of showers, clean the important bits and get out. But if I wanted to wash my hair, it became an ordeal.
I either had to let my mother do it, or while in the shower, I'd have to sit down in the tub (to avoid falling), and slowly wash/condition my hair for 30 minutes, taking breaks in between to get my strength back.
Actually one of the reasons I cut off most of my hair last year was to make it easier and quicker to wash. I just couldn't take it anymore.
It felt like my independence had been taken away from me. The place I used to go to unwind and relax became a place of stress, fear, and exhaustion.
Dizzy spells while standing in an old school Cast Iron Clawfoot tub is no joke!

So you can imagine, when I realized I was too tired to wash my hair, I just broke down....
In that moment everything clicked into place...this was no flare up and I knew it....

How could I not break down...I was scared!...
Scared that it was back for good...
Scared that my life was going to go back to the way it was, which wasn't much of a life.
Scared of the pain, and having to re-adjust to a life of constant pain again.

When I told my mother, she wasn't at all surprised. She had seen the signs even though I hadn't, and knew what was coming. As I cried, she reminded me that this has been known happen with Fibromyalgia patients, that this is just a temporary setback, and she reminded me of all the stuff I had read about having a Fibro Crisis. We talked about what I was worried about, what I feared, and the reality of what we need to do to get me back on my feet again.
She basically talked me back to a place sanity and clarity...and I don't know sometimes what I'd do without her...

So...The war rages on, but unlike before, I know the nature of the monster before me, and I know he can be beaten. I made sure to enjoy my moment of freedom, because I knew, deep down, this would happen again, so I regret nothing.
Standing up, I braid back my hair, hang the warriors feather around my neck, and I once again reach for my sword. Smiling wryly to myself I think "Bring it on Bitches!!" the battle begins again....

ROUND 2!!

My Fingernails are Turning BLUE....WTF!!!!

So for the last 3 days there's been no the heat in the building AGAIN, and I've been freezing my ass off.
Yes... I know it's spring, but it's still freaken cold.... at least it is for me.
I mean....I'm running around wearing wool socks, heavy sweaters and a scarf around my head looking like a WWII European immigrant, but I could live with that if it weren't for the pain.

I'm feeling the cold deep in my joints. A deep aching pain and stiffness that makes me feel trapped in my own body, tired and unable to move, just like when I first got sick.
I've been telling myself this is just one of those things I'm going to have to live with from time to time. That being cold sensitive it just part of living with this disorder, but what I didn't expect to see were actual physical signs of my suffering.
The base of my nails were actually turning BLUE...
WTF!!

I've been trying to get used to the fact that this thing I've been living with, others can't see, yet here's physical proof that I'm freezing.
Talk about a mixture of fear and relief.
I'm relieved because though I've had conformation that what I'm going through is real, and I know it is, I still  sometimes feel like this could all be in my head. But I'm afraid because I'm not too sure what this new symptom means.

I know that two reasons for your nail beds to turn blue are either:
1. due to temperature, or
2. due to lack of oxygen in the blood from, respiratory issues, vascular issues or anemia.
But the only thing preceding my nails tuning blue was feeling extremely cold. I didn't have any breathing problems, nor was the house cold enough to cause that sort of reaction. I have always been slightly anemic but that's not enough to cause this.

So now I have this completely new phenomenon on my hands (literally) that I have to keep an eye on and that I'll have to tell my bran spanking new general practitioner once the issues with my insurance clear up (a whole other bag of worms I'll write about later)

Stupid Fibro Flareups.... :-(

So for the last 2 weeks I've felt physically drained and achy.
Can't sleep at night, and when I do it's never restful. I feel physically, mentally, emotionally, tired, and have been dealing with a constant headache for days.

Sounds familiar, but it took someone else to help point out why....

They are all symptoms of Fibromyalgia. Symptoms I haven't had in Months, but less severe. In other words I've had my first Fibromyalgia Flareup.

Granted, these symptoms are nowhere near what I was dealing with pre-Savella, but everything I feel from the fatigue, to the pain and headaches are like echoes, painful reminders that this syndrome is a life sentence.

So...after finally realizing What I was dealing with, I was determined to find the Why, and if this could be prevented in the future.

Low and behold the moment I started looking back, the pieces started coming together.

Last month was a very active month for me. In fact the most active month I've had in 2 years.
Between the snow storms, going to the opera, starting my exercise program, fully dating someone, getting the flu, my fathers emotional visit, breaking up, and running around trying to find a bridesmaids dress, not only was I very physically active, I was also going through a lot of emotional ups and downs. Half of that is enough to send anybody into a crash let alone someone who's suffering from Fibromyalgia...lol

So...The lesson here is, not to forget what I'm recovering from and not to run before I walk.
Somethings we have control over, but most things we don't. This can very easily happen again if I don't pay attention to how much I'm doing physically, or to the way emotional events affect my body...
In a nut shell, I need to pay more attention to how I'm living my life...

This flareup was a wake up call...
Hopefully I wont need another one...

I Know Why there aren't any Good Fibromyalgia Blogs out there...

...written firsthand by people who suffer from it.
We're all too tired to try and sit in front of a computer explaining why we're too tired...lol
Well at least it hasn't been 4 months since my last post...oops wait....it's been way More!...lol...:)

A lot has happened in the almost 6 months since I last sat and stared at my blogging page trying to figure out what to write. So here it goes...

The Endocrinologist was a waist of money, but at least she was genuine about trying to help, so it wasn't a waist of time.
More bloods were taken, my thyroid hormones were checked (a 1 hour long blood test where they took blood, injected hormones, made me wait for an hour, then took more blood) but everything came back as normal. I was also supposed to take a urine test where they give you a gallon jug, tell you to pee into it for 2 days strait, then bring it back to the lab....
Um...Yea Right!!...
Your gonna make me pee to into a Big Red jug every time I gotta go, for 2 days straight, then I gotta run and haul my urine on a train from Harlem to Union Square, just so I can drop it off at the lab?...
Is it at all a surprise that I didn't do this test...lol
and that heralded the end of my brief encounter with the Endocrinologist

A few months later I went back to my Neurologist who basically told me there was nothing else he could do for me and that I need to go back to the Rheumatologist.
Not mush of a surprise, but for a doctor who didn't know anything about Fibromyalgia, he did kinda try, so I couldn't be too mad, just disappointed.
And bang!...the human pin ball gets hit again...

So I made my appointment to see the Rheumatologist October 21st, not expecting much, but boy was I wrong.
This woman is what I call a Doctor. She listened again to my list of issues, examined me and right away noticed that I suffered from arthritis in my knees.

Ok...thats was a first!...

No one ever said anything about my knees, but they had been giving me pain for awhile. I just figured it was the weight I had gained from my medication.
She told me that I probably had the arthritis for awhile but the extra weight aggravated my condition (wasn't I thinking the same thing...lol).
Because of the arthritis and my family history of arthritis and osteoporosis, she thought my symptoms might be related to a rare form of arthritis that happens in the lower spine.
So off  I'm sent to get an X-ray of my lower back, I'm prescribed anti-inflammatory medication, then sent on my way with an appointment to come back in 2 weeks.

At this point I started feeling that very dangerous animal called Hope crawl out of my chest...

Well...2 weeks go by and just my luck, I get sick. So I reschedule for December 16th (the only day available because of the holidays) which is a long time to wait when you feel like things might be changing, but sometimes you got no other choice. What helped to keep my mind off the wait were some serious migraines with jaw and temple pressure pain that started getting the moment I started taking the anti-inflammatory medication. Mind you, I didn't feel any change to my overall body pain, just the new added head and jaw pain, so needless to say I had to stop taking them.
By the time December 16th arrived, thanks to my bad reaction with the meds, I was back in mental protective mode, expecting the worse (that she can't help me) but hoping for the best.
Turned out my X-ray was normal, and that was good cause I couldn't take the damn medication anyway.

So...deciding not to wait for someone else to bring it up, I took a big breath and I flat out asked her if I had Fibromyalgia.
To my surprise she very simply said yes. That I had all the classic symptoms and signs, but other causes had to be eliminated before any definitive diagnoses could be made.
Yep...after almost 2 years....I heard the words that I thought would never come. After regaining my mental and emotional control I asked her if there was anything else I could do(because by this point my condition had deteriorated to the point that I needed my mothers help walking a few blocks and going up and down stairs). She then told me about a new medication that was just cleared for use in the US called Savella.
Its a medication that was used in Europe for depression but that it's not considered an anti-depressant like Lyrica. It was cleared to treat Fibromyalgia patients who don't show any signs of depression.
Needless to say I was thrilled.
It was something, it was a chance, a hope, and even if all it did was relieve my pain just a little more then the Gabapentin, that was a step in the right direction.
She prescribed the medication with instructions to continue with the Gabapentin and to try to get in at least 4 hours of slow walking a day to help reduce my muscle deterioration.
I was supposed to come back for a follow up appointment in April (when my insurance renewed my allotted number of Doctors visits).

I kid you not... Within 1 week of taking Savella I was moving around better, I had energy, and was generally beginning to feel like my old self again. In fact though I noticed the change, I was still in denial, and it took my Aunt saying something to make me realize the truth of it.

After the second week, there was a noticeable decrease in my pain. I was able to go up stairs unaided (though slowly), I could walk a good distance more then normal, and I even tried to run (which might have worked out ok if my body hadn't been so weak).
It felt and feels even today like I'm waking up from a very long nightmare. The whole reason I can even write this blog entry is because I can think again.
Last night I discovered that my mind was clearing up. It was such a shock to have my inner voice back that I broke down in tears. One of the worse things about this was not the physical pain, but feeling like I was loosing my ability to think, and with that my ability to write. Analyzing and communicating has always been my gift, my way of dealing with the world, and to loose that ability was devastating..

So thanks to this wonderful drug, I sit here now writing in a blog that hasn't seen my formidable wording (lol) in a long time...
Only time can tell what the future holds, but it looks much brighter now that it seems like I'll have one...:-)

"A Little About Me" My Introduction into the world of Blogging...kina...:-/

I should have probably done this as my first post...
but it required me to write something completely new, while with the first two posts, all I had to do was copy and paste my older blogs from other web sights.
I guess I wanted to have things in chronological order so you (the reader) can understand how I got to where I am now, and understand the evolution of my thoughts...

Well... enough of my wind baggage...
Lets get to it....

I'm a 27 year old New Yorker, born and raised in Manhattan with the genetic mix almost as confusing as animal shelter mutt.....

I was conceived by two medical professionals, raised by one, and spent most of my youth hanging out or helping in the hospital after school. It's because of all the time I spent their talking to patients, staff, asking questions, and watching how hard my mother worked to bring some small bit of peace or comfort to her patients, that helped me developed a heighten, real world understanding of sickness, pain and the world of medicine.
I was also born with some health problems of my own, but what made me real "special" was my uncanny ability to catch almost every childhood sickness or find some unique klutzy way to injure myself.
I did this so often that my uncle was ready to buy me a child's hazmat suit and a football helmet....

Through each one of these different experiences/incidents I learned not only how to handle pain (our family mantra was "walk if off"...lol) but how to understand my own body. I started to be able to tell when I was about to get sick and forestall it. I could even tell when something wasn't right and I needed to see a doctor (because of this I was able to catch two very debilitating diseases early enough to be treated), but unfortunately there was nothing I could do about being a klutz except to walk slower and avoid heals which isn't easy when your a whopping 5 feet even...
My uncle to this day still threatens to buy me a helmet...
Growing up I never feared sickness or pain because I learned how to handle both. In fact I was proud of my ability to handle pain and as I grew more accustomed to my body's signals, doctors visits grew less frequent. Then everything changed.....

I have been living with this sickness for over a year and a half now which is nothing in comparison to the 4 to 5 years the average person has to wait for diagnoses.
Life has changed dramatically for me since the pain started, but not all the changes have been bad. I've learned a lot about myself during these difficult times, and even more about those around me. I share my journey in the hopes that what I'm going through can help someone else who is also struggling.

Let me clearly state that I have Not been officially diagnosed with Fibromyalgia.
All my symptoms match the disorder but the one or two doctors who believe this is what I'm suffering from don't know enough about the disorder to officially diagnose me.
My hope is that if I'm proactive enough with my health care, push for doctors to take me seriously, but allow then to come to there own conclusions, I can find some answers and get diagnosed. That way I can try to enjoy some remaining aspect of my youth.

My next post will be about how it all started, what I've been through, and where I am now....

"F-Word Rant on a Roll with Mustard on the Side" Written Saturday, November 15, 2008

In this blog/rant I had what's commonly called an "emotional outburst" after a friend asked me about a recent doctors visit.
In my family, my rants are called "Fuck Rants" because I have the tendency to use that key word to an obscene amount. Especially if I'm already emotionally aggravated.
It was left on her page as a very long comment and I turned it into a blog.
How things evolve...

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"Wait and see"....
That's all they keep saying..... wait and see.
Like my fucking pain is going to magically disappear.
I understand them not wanting to diagnose me if they don't know what the cause is, but at least they could have helped me with the pain earlier.
Only a few days ago my doc finally saw how bad off I was and prescribed me something to help with the pain.
8 fucking months of me saying "Hay...Um don't mean to bug ya but I'm in a fuck lode of pain". But now when they can actually see me barely able to hobble into there damn office is when they do something about it.

Fuck Um!!!!!

Oh... and the cherry on this Shit cake is that the pain pills they prescribed are usually given to people that suffer from Fibromyalgia. The same fucking thing I was sure I was suffering from 6 months ago but that the docs are only figuring out now.
I fucking found it on the web for fuck sake!!!!
I went to a respected medical web sight, put in my symptoms and POOF there it was.
Don't they have the Internet!!!!

Even if it's not the exact diagnosis, it could lead them in the right direction. Fuck!! It could lead them in any direction instead of having me just sit here in pain.
Maybe then I wouldn't have had to wait 8 months for someone to give me these pills, or to set up a freaking MRI.
Maybe then I wouldn't have had to be tortured with the constant pain and lack of sleep, unable to even leave my home or be held cause of the pain it would cause.
I was being bounced back and forth from doctor to doctor like a helpless ball in a pin ball machine.
Yet they're still waiting to see what happens.........

I'll give ya a quote from a movie:
"Well, honey, doctors are sadists who like to play God and watch lesser people scream..."

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Added note:
In the 8 months that I have been suffering, each doctor has only drawn bloods for tests. I've seen 4 different doctors, have had enough blood drawn from me to create an army of 5 foot clones, but to no result. Though I clearly stated to all of them that the pain was severe and that it started in the back of my head and neck, down my spine, then spread to the rest of my body, only now are they sending me for and MRI and a EMG.

On a more positive side, the pills are beginning to help with the pain which gives me hope that this is the right course and that's why I even have the energy to bitch....lol.....=)