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)

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)

Can Laughter truly be the Best Medicine?

So...I'm having a "Fibro Crisis", what I affectionately call a "Fibro Cluster Fuck!" and it's really beginning to piss me off...
But I'm using that anger to my advantage....

I'm dealing with all my old symptoms of pain, fatigue, short term memory issues, but I'm still moving, just not as fast as I would like.
I'm walking at least 20 mins, every other day, but I've also added weight training, floor exercises, and some yoga moves to my routine.
It's interesting but I seem to burn more calories walking and weight training then I did with just alternate running.

Because of my stupid pain, I finally conceded and asked my mother to be my personal trainer, but to my happy surprise, she is really good at it!
She knows what she's doing from both a personal and a professional aspect, she's good at inspiring me to push myself, and yet she knows when to stop me from hurting myself. The only chink in this perfect scenario is that she either makes me laugh, or I end up making her laugh. Especially when shes trying to get me into a embarrassing yoga pose.

It reminds me of when I was being trained at Baily's by my personal trainer Konstantin.
Every training session was intense, but we always had moments of hysterical laughter that made all the exhaustion worth it at the end of the day.
One of my favorite moments was when he had me working with the medicine ball and this guy came into the room wearing very tiny shorts. Not an unusual sight in a gym, especially one downtown, so we didn't think anything of it, that was until he decided to do floor stretches and his left Nut popped out of his shorts.
Both my trainer and I saw it at the same time, and we died...
The guy was totally oblivious both to the fact that he was getting a full frontal breeze and that we had seen it. After the guy left the room and we had composed ourselves enough to get back to work, the rest of the training session became one long joke... "don't let that ball slip", "you want the blue ball?", "Stop playing with your balls", "you don't want to let your ball hang too low" and after every ball joke we would giggle like stupid little girls...lol...but it was the best session I ever had...

So if what the doctors say are true, and laughter is good for your body, strengthens your muscles, and helps you burns extra calories, then I'm on my way to excellent health...lol

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!!

4 Months and here it is "My Journey as a Medical Ping Pong Patient"

Wednesday, February 27th 2008 the pain started and has yet to stop.....

It was my second day back home after being away for the weekend and I woke up with this severe pain in the back of my head and neck. Having had back problems all my life I just thought it was a pinched nerve, but as the days followed the pain grew worse and seemed to spread. Before I knew it my whole body was in agony.

Every muscle in my body felt like I had overdone it at the gym, my joints were stiff and painful, I had a constant headache, and I couldn't lean my body on any hard surface without it feeling like I was pressing on a bruise.
Sitting still became almost impossible as lack of movement made the stiffness in my joints worse (which also meant no sleep) and to top it all off, I felt like somebody had drained all my energy from me.

I made an appointment to see my general doctor on March 18th which was the earliest appointment I could get. When she finally entered after a 45min wait I told her everything I could. After my physical examination where everything seemed to be fine except for the pain, she came to the conclusion that it might be a re-occurrence of Lyme or even late onset Parvovirus because of the joint stiffness. Though they didn't cover all of my symptoms, especially the full body pressure pain, it was a start, and I believed her when she said it could be more then one issue at work. So they took blood and told me to come back for a followup appointment on the 26th. By then they should have the blood work and we could take it from there.

I arrived at her office on the 26th, now a month into the pain, with new symptoms of light, sound, smell sensitivity as well as Hot/Cold flashes and night sweats. Enough to drive anyone crazy...but I kept my composure as well as the set of notes I had made to keep track of my symptoms.
After another long wait in the examining room she arrived with blood results in hand. I was negative for both Lyme, Parvovirus, but my platelet count was 604 and that was what she was concerned about. She had looked back at my other blood tests, and noticed that my platelet count had been slowly rising since 2005. I also had some other abnormal readings but nothing deemed important since they were just a couple of points above or below the norm. She wanted to take more blood to see if my platelet count had changed and if it was still high she wanted me to go see a Hematologist.
I asked about the joint, pressure pain (which had become worse) and constant headaches (at this point they were everyday) she told me that she would check for markers of inflammation encase it was early onset arthritis but that I should go see a Rheumatologist and a Neurologist.

Yep...Second doctors appointment and now I have to look up a Hematologist, a Rheumatologist, and a Neurologist. If my symptoms hadn't been so severe, I would have said "Fuck That!!", taken some aspirin and gone home....but unfortunately(or fortunately depending on how u look at it) my pain made my decision for me.

When I told her about my other symptoms(handing her my notes), she told me they were probably related to the headaches and left it as that. I was examined again and once again cleared though my reaction to her examination was noticeably more painful.

They took more blood, told me to call in a week, and sent me on my way.

A week later I called for my test results.
When I finally got the doctor on the phone she didn't seem to know who I was. When I reminded her I was calling about the blood work she found it and told me my platelet count had gone down to 580 so she didn't think there was anything to be worried about but she still thought I should go to a Hematologist just to be on the safe side. When I reminded her about my pain and asked her what I should do it, she asked me what kind of pain. I again refreshed her memory but she sort of dismissed it saying that my markers for inflammation were normal so she didn't know why I was having the pain and she couldn't do anything for me. When I asked if I should still see the Rheumatologist and Neurologist, she told me "only if I wanted to"...
It was after that phone call I realized that though she's a nice person and had been a good doctor up till this point, she was just too busy to help me with this, especially if she couldn't even remember who I was and why I came to see her in the first place.
I needed someone more proactive, someone who really hears and sees how much pain I'm in and looks outside the box. I haven't been back to see her since....

That was the beginning of the ping pong game with Me as the ball....

From April 2008 until now I've been bounced from Hematologist to, to Neurologist, to Rheumatologist, to Gynecologist (encase it was hormonal), back to the Neurologist, to a Gastroentronologist(due to other symptoms), to a completely new Hematologist(who was a complete ass hole/moron who asked me 3 times if I ever had an abortion, prescribed depression medication he had no business prescribing and told me to take a vacation...right) and soon will be seeing a Endocrinologist. Each one has only focused on one tiny piece of the puzzle instead of trying to see the whole picture. Once they've ruled out there one tiny piece, all they can do is pass me on to another doctor.

My platelet count has now come down to into the 400's so the only thing that had caused any real interest in my case is gone.
I still have odd blood readings but nothing again that would perk up any interest.
The Neurologist did discover that I was extremely vitamin D deficient which could cause "aches and pains" but the prescription vitamins he put me on did nothing to relieve any of my pain. Plus I definitely wouldn't call what I have as "aches and pains" and though I said that repeatedly to the Neurologist, while he kept repeating "aches and pains" like some mantra.

It wasn't until November 2008, 8 months after my first doctors visit, that my pain was ever fully addressed and I was prescribed the seizure medication Gastroentronologist and muscle relaxers to help manage the pain.
I still believe it would have been an even longer wait if it wasn't that the Neurologist saw how difficult it had become for me to simply rise out of the waiting room chair and walk into his office.
My first non-blood related tests were scheduled soon after that day with an EMG in November and an MRI in December both of which came back normal. The only side notes being my noticeably heightened pain sensitivity to the EMG and slightly enlarged lymph nodes in my neck that showed up on my MRI but were ruled out after I came down with a cold soon after the test was taken.

This past May of 2009 my Gastroentronologist discovered that my thyroid was slightly enlarged and due to my recent weight gain, sent me for a sonogram to determine how large it was. The sonogram came back that my thyroid was indeed enlarged but within the normal limits at it's highest rating which is a 5. Again readings that cause some interest and questions especially since I've never had a thyroid problem before so we'll see what happens when I finally see the Endocrinologist.

The Gabapentin which had started off taking a slight edge off my pain, unfortunately no longer seems to be working, so on June 15th I returned the Neurologist. He told me he has done everything he can to help me and that I need to go back to the Rheumatologist. When I asked him wither he thought this might be Fibromyalgia, he told me that he doesn't know enough about the disorder and that it was predominantly diagnosed by Rheumatologist's. When I told him about the pills not seeming to work anymore and he upped the dosage.

I've asked myself the questions "Am I going Crazy??", "Am I just Depressed??", "Can this all be In My Head??".
I really thought about each one and I can honestly say No!!.
My perception on reality hasn't changed, if anything I'm more positive and focused then ever before because I don't have a choice. When your in constant pain and your world has been turned upside down you can either allow it to destroy you and those around you, or you can re-evaluate whats important, see this as another lesson to make you stronger, see it as another path to be taken, then you put it on your back and keep walking. I chose the second path because the first choice is the choice to give up and I Refuse to give up, so I choose to see the glass half full.
When I do get depressed or frustrated its usually cause I'm tired and the pain is bad, but I shake myself off and pull myself out of it. The depression always comes after the pain, NOT before.
I have lost friends because I can't do the same things I used to and though at the beginning it hurt, I again focused on what was important.
And what is truly important is taking each day as it comes.... with a smile.... and a laugh...

I will write about my visit with the Endocrinologist as soon as I can....Hopefully not in another 4 Months...;-)

"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.....=)

"Shadow" The First blog I ever wrote about what I was going through. Written Wednesday, September 03, 2008

I'm clear for the moment but I don't know how long it will last and don't know what to write......

My mind is being affected by whatever it is that is causing me all this pain (the doctors still don't know what it is). I'm not as clear as I used to be. It's like being trapped inside your own body. The person you used to be is there inside this pain racked flesh and try's to speak out of my mouth but can't because of malfunctioning misfiring synapses, thoughts freezing like an out of date computer while I'm in mid sentence. I'd try to describe it further but I'm loosing my words even now.

I try to laugh about it....seeing how I'm now on equal footing with my aunts and uncles....all of us trying to remember what something is called, sitting in silence until we all look at each others silent faces and start laughing, but part of me feels their worries through side glances and forced smiles.

I feel lost, isolated from my friends.

Most don't understand, and I can't explain it any better then I have. It's something you have to experience. Some are annoyed...cause I can't hang out, or cause I don't call. They don't understand that I don't have a choice.
I don't call cause the words aren't really mine....
I don't hang because I'm not really there.....
They belong to this shadow, echo, the one who can't spell, who stops speaking in mid sentence cause she can't find the right word, the one who can't walk up a flight of steps without the pain making her knees give way or the one who can't be hugged hard cause the pain will linger for hours.
I don't want them to see that cause if they do then it becomes real. I can take the worried glances from family but I don't think I can take it from my friends.

So I fake it....
I try to walk without a limp though it hurts more, I make jokes when I incorrectly say a word or forget one, I smile and I don't talk about it....all so they don't see my shadow........