.:: Yolospat ::.

My narcolepsy is getting worse. At work if I’m in the middle of working on a document I just wake up with my finger hitting on some key filling up the page. Often times I have to us only one eye to take away the double vision. The new med they want to try on me can’t be given through the pharmacist or the hospitals, it can only be gotten from the manufacturer itself. (www.xyremcom)

I finally called the FFC center to see what was going on with that. I found out that they hadn’t even faxed over the paper over. This is the second time in as many months they have failed to fax in my meds. It’s rather surprising, because this place has a good reputation. When I told Dr. C about what happened last month he was just so visibility upset about it I thought he was going to spring a leak. I wonder what he’s going say this time and how upset he might be. The strange thing is that the staff at the FFC has been excellent so far, much better than I’ve ever experienced…so where are these problems coming from?

It’s not like I want to get anyone fired. The nurses I do have are great and kind with excellent bedside manner.

But this is my life we’re talking about. I’m falling asleep playing Rock Band with my husband, I’m falling asleep at work. Which is not good when my boss or the bigger bosses walk by. My confusion level during these times make me feel like a doorknob. I randomly fall asleep when I’m concentrating on something pretty hard.

I will call tomorrow anyway to see if that paperwork has been faxed and I’m going to request that my doctor call me when he has a minute.

As for the other Fibromyalgia symptoms, I have to have another sleep study done due to my slight sleep apnea so I get to wear one of those scary masks at night. Oh boy, eh? I wonder if the face thing will amplify my snoring. I feel bad for my hubby. He went to pick up my meds that were due for a refill. I couldn’t do any of this without him.

I’m just so frustrated. I’m using the cane all the time now and I’ve been enquiring about getting a power chair (I first called the Scooter Store place that you see those commercials for but my new insurance doesn’t cover it. What’s next in the whole meds scene? More to add to the arsenal or less to make me less sane.

And where do I go for all these questions? All the support groups I have found are so pessimistic, where are the people with Fibromyalgia and Chronic Fatigue living happy normal lives? Where are their voices? I’ve heard they exist, but where?

If I hear one more person tell me it’s going to be ok. I’m going to eat them for dinner.

I gave all my employee’s a day off tomorrow to sober up. I’m the only one out of the bunch that can’t drink due to medication so I thought, hey? Why don’t I take the day tomorrow and let them off the hook since they have done such a great job over the holiday break. I know, such a nice boss, you should work for me. How are your computer skillz? If they are up to par I’m interested in expanding my team. Just email me at yolospat @ gmail dot com.

Anyway, in an effort to replace what was once taken from me and sold for a vice without my permission, today was one of those days. My husband got me a new acoustic guitar.She’s a Dean and she’s HAWT!!!

Not only is she beautiful, but she sounds so much better than my old alverez. Now I need to start Guitar Lessons somewhere. I’ve always wanted to play and I’m so excited to start.

Due to my doctors appointment yesterday some things are worse. My blood is 3 times thicker as before which is causing me more pain. I’ve been put on Heparin twice a day and due to the contract I signed I have to wear a medical necklace stating anti-coagalant.

At least it’s out of the way but I’m sure getting sick of all the pills and shots. I have so much more but I have to go to bed, because I promised my husband that I would go to bed at the same time every night and it’s already past my time. Anyway, more tomorrow.

I’m on a million and 4 meds it seems like and for the last few months my legs have been giving out on me to the point where I have fallen. Now for the last few days I keep falling asleep at random times. Worst was today while on a conference call while holding my coffee cup. I woke myself up snoring while watching the coffee spill all over me. Ugh. Embarrassing. I got PLENTY of sleep last night so I don’t know what is going on.Twice on the couch last night brendan caught me sleeping with my head down yet my fingers will still on the keyboard.

This is insane. I can’t just randomly fall asleep. Altho I’ve had a little energy the past few days and I have felt better the last two days, I have this annoying system.

They better figure this out quick. My labs from 3 weeks ago came back and Dr. C personally called me. Everything is worse. The meds aren’t helping, and some of the lab readings were downright scary. I’m supposed to be on bed type rest for the next week and a half till my appointment (there I go, I just feel asleep again, ugh). Thing is, my doctor never calls me personally. Usually he has the nurses call me to relay messages, but this time he had only had my labs for 15 minutes before he looked at them, called tranquilizers in and some other shit (first day of tranquilizers I didn’t like them so I stopped taking them, that isn’t explaining the random sleepiness)

I just have a gut feeling he’s going to drop some sort of ball on me. He can say anything he wants as long as he doesn’t say the word “terminal” .. fuck that shit.

Oh ya, I got Brendan a PS3 with 2 guitars, drums, a remote, 2 controllers, fallout3, bioshock, Oblivian: Elder Scrolls, and guitar hero. Ya, my husband is spoiled.

He just better be getting something for me this year.

I’ve been so sleepy today. Not the “I’m going to sleep good night sleepy” but the “if you leave me alone for 5 minutes i will be sawing logs in no less than 5 minutes. I hope the xyrem.com stuff works.

I’m already on Provigal and it doesn’t seem to be doing much for me at all lately. Just tonight I kept falling asleep writing out this blog entry and it’s taken me all day long. I hate it. My doc wants to put m on xyrem. We’ll see. Dr. C made a surprise call to me on Friday himself. Usually if he needs to tell patients something he asks the nurses to do the phone call.

He called me 15 minutes after he received my labs. Sigh.

Mostly my triglycerides are over 500 which is stroke level. Oh great, ya know? JUST what I was needing to hear, especially since that way was one of my good days with minimal pain. When I would ask questions he said he’d talk to me about the rest of my labs on my appointment which is on the 29th. I finally made him give in enough to tell me that my labs were 3-5 times worse than when I had them 3 months ago which means non of my meds are working. Hurray! I just have something in the back of my head that it wasn’t the only bad news he wanted to give me and that’s why he keep reassuring me that I would be there on the 29th. I’ve never missed a doctor appointment, or an IV treatment appointment, or any appointment when it comes to the Fibro & Fatigue Center

Freaked me out. I’m supposed to be on bed rest and in his words he said “don’t move unless you have no choice. Um, ya, I have ADD. I don’t know how to stop from moving especially since I’m not on my ADD pills anymore. What if he has something really bad to tell me. Then I over heard him telling my nurse (Brenda) to call in tranquilizers so help me stay calm, so it’s not like the nurses weren’t there and yup, MORE pain meds that aren’t mixed with tylenol or Ibuprofen

Then he told me any dizziness I had, whether it was sitting up or If I started to feel numb at all to call 911 and to have my husband call him.

I just can’t get it out of my head that there is some thing really wrong and he’s waiting to meet me in person when he tells me. He’s NEVER called me about my labs before, what makes this time so different and why is he calling personally, when I have an appointment in a week and a half until my next appointment. I don’t know. Now THAT has got me worried.

So, doctors orders. Don’t move. I can get a lot of WoW in .. that is if I don’t keep falling asleep everywhere I go.

Sigh. I wish this were all over Most of my friends at work don’t know about this blog, but if they will know my secret usually only reserved for those closet to me.

My eyes are closing. I think I’ll sleep right where I”m sitting.

Friends are great. Just got off the phone with my friend Chriss, catching up on stuff and stuff. Also had a nice long talk to one of my co-workers today who has cancer. Her treatment day is on Thursdays, and mine are on Wednesdays. Anyway, it’s nice to talk to someone with a chronic illness, not that I’m glad she has it, but glad we can relate to each other. She’s so sweet.

Brendan and I went out on a date last night to the used bookstore in Marietta called The Book Nook. It’s our FAVORITE used bookstore out of the 4 that we have been to so far. We’re trying to fill in the holes in our collection, working on Dean Koontz, John Saul, and Stephen King. The owner is always glad when we come because we’re always the biggest sale of the way with an extra 10% off
Tomorrow I’m having a sleep study done. I have to be at Wellstar Windy Hill Hospital at 8:30pm tomorrow night. The rooms are like motel rooms. I can wear my own PJ’s and bring my favorite blanket, aka woobie, since it’s more of of something to hold than to use as a blanket. They have wireless internet so I can surf the web and stuff, or watch TV. Bedtime is between 11:00pm - 11:30pm. They will hook me up to a bunch of wires before I go to sleep so they can monitor everything. They are even feeding me breakfast in the morning. Brendan is going to drive down with me to get me checked in and such. I love my husband I’m a little scared because I always feel weird sleeping away from home, but if they find anything wrong we’ll have a plan to fix it.

The thing I’m going to miss the most is having the 2 cats and my dog sleeping next to me. I tend to fall right to sleep when they are, but I can’t ever stay asleep. Sigh. We’ll see.

I have a new favorite channel. It’s the “Bio” channel which stands for “The Biology Channel” … I love learning about people and their lives. I just realized I’m going to miss House MD tomorrow. Oh well, it’s going to be on the DVR when I get home the following night.

I’m so pooped tonight. I feel today at work because my legs have been giving out. Talk about embarrassing. Leave it to me to trip over nothing.

I’ve had two really bad Fibro days the last two days. Discouraging at the least. It seems I haven’t been awake much today and it’s already time to go to bed. Frustrating again. Sigh. Everything hurts, mostly my legs. It’s really sad when morphine doesn’t take care of the pain. I want to kick something but that would only but me further behind. Whatever.

This change in weather has been kicking my ass. This morning I was so sore and stiff. The pain lately has been a lot worse too, especially in my legs. My feet have been swelling up all weekend too so I’m trying to keep them propped up as much as possible. I have the just-got-run-over-by-a-mac-truck feeling today and lately.

I found a web site Friday night that streams the police scanner at Scan Cobb. When I was growing up my Father was a fireman and we always had a police scanner playing 24/7. I used to have a mobil scanner, but I don’t anymore so it was exciting that they actually stream this stuff. It makes me feel like my Grandma Reba who still has her scanner going all the time.

Tomorrow is my husband and I’s 2nd year anniversary. It’s amazing.

I’m so sick of them. Hot/Cold Hot/Cold … when will this be over?

I had my monthly follow-up with Dr. C today. He ran a virus panel on me last month, so today he went over the findings. Apparently I still have pneumonia from when my Grandmother gave it to me last April. However, this is going to be kept a family secret (she doesn’t even know what a computer is so I’m safe to write about it on my blog) otherwise she would feel absolutely horrible and guilt ridden. She’s 89 years old, she needs nothing but happy memories from here on out. I also have the Epstein-Barr bar virus and from what I understand, it’s a common virus also known as Mono. The weekly IV’s that I’ve been getting aren’t seeming to help, so he raised the dosage on my pain patch. I’ll be going on twice a month for an anti-viral IV along with a shot that goes along with that. No more weekly IV’s, yeeeeee haw! So excited about that. It’s gets a little annoying to get poked so often.

So, all in all we have a few set backs that we have to clear up, but I feel so much better than I did the month before last. That’s progress. I’m paying about $2k of meds per month. That makes me not so exicted, but once I start getting better hopefully the amount will start going down.

Since the pain patches aren’t exactly the easiest thing to keep on, I found these clear water-proof dressings at CVS that fit perfectly over the pain patch which allows it to breath and keeps it on my skin without any creases. I need to order more since they only come 8 in a box. That’s the box on the right side of all my new meds and re-fills I came home with.

I spoke to a woman at the FFC today who was really discouraged with her fibro. She was feeling so alone because she came from a small town in South Carolina and didn’t know anyone else with fibro. I talked to her a bit and told her even tho we might not all have exact same symptoms doesn’t mean your alone. Every one with fibro is unique with their own unique bodies and unique yet similar symptoms. She said that was the most hopeful thing she had heard in months. Always makes me feel good to know I helped someone.

So, this is the month to get rid of those nasty little virus bugs in my blood. Oh joy!