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.....=)

"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........