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...

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!!

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...:-)

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...;-)