MRI Results Lead To More Testing...

So had my MRI with and without contrast and I seem to be a ok.

No one mentioned any abnormalities like a hidden eyeball or limb from my ill fated twin, nor did anyone find any damage from how many times I had hit my head growing up (very surprising)...but I wonder why they didn't find the chip aliens implanted when I was a child?....oh well if it were easy to spot then that defeats the point of secrecy...;-)

Anyhoo... went a bit off course there....lol...
But back to topic, since my results were clean my doctor has to look elsewhere for why I'm having these severe dizzy spells and the next place to check is the heart. Now she hasn't ruled out seizures completely but considering I seem to have a borderline abnormal resting heart rate and it can jump pretty high very fast when I go from inactive to active or from lying to sitting and standing she scheduled me to have a whats called a Tilt Table Test.
Basically a cardiologist does this test to try to find the cause of unexplained fainting. The Tilt Table Test is what it's name implies. The patient lies on a table and there heart rate and blood pressure are monitored as the table is tilted from a lying to standing position. It allows doctors to monitor your cardiovascular response to a change in position.

Out of all the things I've gone through this passing out thing is the scariest. Not knowing when it will happen or why. I try not to think about it but I can't help being afraid whenever I leave the house on my own. But I'm determined not to let this control me or change my life.
If it happens... it happens...these retarded physicians will figure it out eventually...

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)

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...

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...;-)

"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.....=)