A Bad Day Followed by Another Bad Day

So, I just need to vent a little bit here. I will preface this post by saying I have been sick for almost a month (or really, over...it's been more than 31 days; and yes, I've counted). So my mood has already been tipping towards the "don't touch, talk, look, comment, look sideways, etc about me" side of nastiness.

Now that I've gotten that out of the way, lets just re-hash out how annoyed and upset I am with my doctor. Have I told you this before? Well after moving states, alone, without the advocacy of my Mom, and the first doctor I had here leaving me, I am left with a deaf, oblivious, afraid of work doctor who refuses to listen to me let alone fight for my health. So here I am, still alone, fighting all by myself (more alone now than even before my other doctor, who sympathized and listened to me, left), with more flares than I have had since I was 18.

Isn't that awesome?! And now to add fuel to the fire, the referral for the rhuematologist I had asked for was denied...Because My Lab Work Was Normal! My lab work has ALWAYS been normal, and he would know that if he took a minute to read the notes from the doctors who diagnosed me...which I've requested to be sent up at least twice. Also, Mr. Dr., Fibromyalgia doesn't show up in labwork; it doesn't take a genius to know that.

Oh, and while he was at it, he let me know that there is not a single rhuematologist or pain management doctor in the area that will see me. He encouraged me to do my own research to possibly find another specialist (which, mind you, I already did to find the multiple specialists he subsequently shot down). Does anyone else have to be the doctor and the patient and the sympathizer all at the same time (because as much as I love my friends who are here, they are not the same as having your mom by your side; and my mom works so hard to be there for me, but that is very hard from the other side of the country with a three hour time difference)?

That was Bad Day #1.

Then I woke up the next day, still sick, and with flare and/or flu type symptoms. Oh, so much pain. I couldn't tell if it was sicky pain or fibro pain. The worst flare/non flare I had had in quite some time. If it wasn't for my parrot yelling at me to get up and feed him, I would have staying in bed all day and not moved a muscle (which didn't help either, they still throbbed then too).

 So, naturally, I did what any normal 22 year old girl would do, I called my mom. (I love her so!). Not having a thermometer and coughing for a month with now aches and pains...off to urgent care I went. After 3 hours, a face mask, an uncomfortable nose swab (I would rather a nerve conduction test I think), and a cute male nurse (there is a positive in there somewhere), I do not have the flu. I have some viral infection, $61 in medications and an inhaler. I can't wait for the bill for the visit to come in the mail.

So now I sit, Bad Day #2 almost over, waiting to take my next round of meds before I can go to bed, wallowing in self pity.

Anyone else deal with anything like this? The frustration is overwhelming. My doctor can't even find the time to listen to me enough to find the motivation to help his patient find a specialist she needs...and then another doctor tells me all the illnesses I don't have and "hopes" the medication she prescribes me helps me feel better soon. Ugh!

On a positive note, here are a couple of pictures of that cute parrot I was talking about. His name is Tonks and I love him so!

 

Trip to the Carribean

My most sincere apologies for it taking this long for me to post about the trip. I have no great excuse for you, other than it has taken quite a while to get back into the swing of things. I got sick the last few days of the trip, and as we all know being sick and having Fibro doubles the effects, and on top of that flying across the country took it out of me. I am now less than a week away from being sick for a month, the farthest thing from fun.

As for the trip, I didn't have any major problems, which is the greatest blessing. The hardest part was trying not to show it. I attended this trip with nine other people, not all of whom understand what I deal with on a daily basis (well none of them really do to be honest). Oh, and the feeling of being a burden to everyone. Its like they hear me say I have Fibro, and they see me take the elevator even for just one flight of stairs (when its clearly faster not to wait for the elevator), but they still forget; and how can I blame them? They don't live with this. They feel normal. They see me acting normal. There is such a disconnect, and I wish there was a way to connect all the dots.

But really, I had so much fun on this trip. I was so happy to know myself well enough to participate in all the activities I wanted to. To not let anything hold me back. To have conversations with people who care about me. To enjoy myself. To relax. To recoup. To be myself.

Now for some pictures!

FLORIDA

AMBER COVE

ST. THOMAS

SAN JUAN

GRAND TURK

KENNEDY SPACE CENTER

UNIVERSAL STUDIOS ORLANDO