.:: Yolospat ::.

This one was the worst yet. Better luck next year kid.

I’ve been sleeping for the majority of the time now that I’m not taking my thyroid meds. I think my energy has depleted at least 75% because of it. Something I’m going to point out to Dr. S when I see him next week.

My pulmonary doctor did my allergy test. There were about 80 different things they were testing for. If it wasn’t so ironic and I didn’t already sort of know it anyway, the one and only thing I’m allergic to is my cats, out of 80 different things. That’s good since I’m in allergy america.

I have tell a funny about my husband. They take me out to do a breathing test on one of their machines so as I’m heading back to room 8 where they placed us in the first place I thought I smelled something foul. It got stronger the closer I got to my room and when I walked into my room, BAM.

“Did you fart?
“About a min after you left, you can still smell it?
“You can smell it all the way out in the hall!!!!!!!”

So here I am with two magazines wafting the air, hoping the smell either goes away or just gives up and stops stinking.

I saw my doctor coming so I put away the magazines really fast and sat on the bed. He walks in, looks around and says,

“Um, lets use the room next door, I’ll get one of the nurses to do your allergy test”

My husband cleared a room. With his butt. I was so embarrassed at the time, but the minute I walked out I was laughing. I told him he couldn’t do that and to go to the bathroom next time. He’s the only one I know who can have scentless farts so you never know what your going to get. Not that day. That day, he literally cleared a room.

They did schedule an endoscopy on me for this Thursday to look at the blockage in my airway and take a possible biopsy. They will put me out for a small time and my boss told me if I need to take the day and work from home that would be fine. I told him we’ll see.

Yesterday the majority of us went home because the A/C wasn’t working and it got to be 90 degrees in the office. I was sweating like a whore in church. I hope they have it fixed today.

Not sure why I’m up early but it feels good and I slept in the recliner last night so I don’t have any sort of backache. I give my MRI scans to my pain doc next week. I want to try and scan them all first tho, even if they are a little big. What’s a good stitching program?

My Mother made the appointment and unlike me she likes appointments in the morning. I usually try to shoot for mid afternoon or late afternoon. We had horrible rain and wind storms this morning to the point there were street lights out at the most busy intersections.

When it rains, people here in Georgia people loose their ability to drive. Its like they reverted back to the first time ever got in a vehicle for the first time accidently putting it into reverse and driving through the garage door, as their parent in the passengers seat tries not to blow a gasket knowing it was only a mistake.

You’ll see drivers driving 15 mph and others (usually in trucks) that are going 15-20 miles over the speed limit slowing down only when they start hydroplaning.

The doctors office was right above the Lung Clinic that I go to. We were 15 minutes late due t the weather and the street lights being being down. We also had to wait for a train. I filled out all the necessary paperwork and nearly 2 hours later I actually got to see the doctor.

Even tho my labs showed my thyroid was low she wants me to stay off my thyroid meds. She said I would probably gain all my weight back that I lost and she wants to get a blood test in two weeks. Right there was enough to make me upset. Nothing has worked to help me lose weight except this so I wasn’t thrilled with this idea. I started crying and she turned to my husband and said “since she isn’t comprehending what I’m saying can you write this down” like I wasn’t even sitting there in the same room. I’ve lost so much weight and it feels damn good. When you have 65 pounds less of your body and knees it’s indescribable. Thinking of gaining that back just isn’t remotely ok with me.

After I gained my composer a bit I started asking her the questions I had planned to ask her before I went in. She didn’t answer a single one of them and told me come back in 2 months to do some blood work and see where we were with things.

I think I saw her for about 10 minutes. Maybe 15.

As I passed b the desk to check out I gave them my slip and when the nurse went to schedule my appointment I told her I wasn’t coming back. Once I got home I called my PCP and told his nurse of my experience and they suggested another doctor for me to see.

Its rare to see a doctor with any type of bedside manner anymore (or nurse for that matter, not talking about you Hillary Gayle, your going to be the best nurse ever!)

So, I’m back to being extremely discouraged and frustrated. How much longer can I do this?

I’ve been having some really horrible sleeping problems. My sleep meds have decided to quit working on me giving me nothing left to aid in the sleeping process so after a few days of that the body starts giving into the exhaustion to where I was finding myself asleep at my desk (which is quite comfortable to sleep at btw).

Finally, I was able fall asleep and it took a full 24 hours for my health bar to regain its full strength. The bad thing about this is it’s 3:30am so there isn’t much luck going back to sleep after I’ve already woken up. I tried, didn’t work.

I did however take another fall in the bathroom. I think my shoes were still wet from being out on the back porch trying to get my dog to come back inside I landed square on my right knee. For people with Fibro, falling has to be the worst. It’s not just a fall. It’s a total body flare up so not only does my knee hurt but my body feels like its just been through the meat grinder. Ouch.

My plan is to work early and go see my new doctor at 1pm. I hope he helps. I’m really tired of this doctor hopping. Mom keeps telling me there is a doctor out there that will help me and after a year my 8 ball is saying that things are looking grim. I’ll keep trying. What else can I do at that point?

I’m looking forward to the 31 days to a better blog challenge.

I have never done a challenge before, whether it be one of those “write a book in a month deals” or the “1001 goals to accomplish in 1001” days (even if I’m still working on that one, I just don’t have all the goals on there yet. So when I came across Pro Blogger as I’m going through my RCC feeds in Google Reader and came across their 31 days to build a better blog. This task at hand actually makes me excited and gives me something to look forward to. The contest begins on April Fools day (April 1st for those across seas that don’t keep up with American tradition.

I’m totally tagging my best friend on this one. Cammy-bear, you up for the challenge?

Ok, I admit I’m a coward again. My MOTHER actually called and made the appointment and “got a feel” for the place. I know I’m lame in having my Mother call but at this point my anxiety level shoots through the roof when it comes to doctors. This last year I have been to doctor after doctor who hasn’t been able to help me and I know the poem I wrote was pretty emo, but I’m really tired of living a life with so much intense pain where I can’t even dress myself all by myself, or take a shower without my husband standing in there making sure that I don’t fall, or holding the shower head for me because my arms aren’t strong enough to do it. I’m 30 years old living like a 90 year old who is 2 feet away from a nursing home.

THIS SHOULDN’T BE MY LIFE!

But it is. This is how it is day in and day out. The basics of caring for myself have been taken away for me. It makes me angry in so many ways that’s it’s changed who I am. Luckily my husband still loves me and supports me 100%

When I was in the hospital a few weeks ago my Mother was picking up some meds from CVS. My Mother is the type that talks to EVERYONE, god love her. It used to be annoying as a kid because I had ADD so bad I wanted to go go go, not wait until Mom stopped talking to people. Well, this talk she had with this woman at CVS her experience and struggle was shockingly similar to mine. She had gone to all the doctors I had until she found the right doctor to help her. She gave my Mother his name and where he was located so both Mom and I googled him this morning. He sounded wonderful on his web site. There was even a link that said “Update me about your condition” like he really cared how his patients were doing. You could imagine my shock at that. When I called the office I talked to the receptionist. I explained to her about my fibro, arthritis, and hypoxemia and asked her if this doctor had any experience dealing with that. Her answer was “oh yes Ma’am” .. then I asked the hardest question of all. I told her I had really bad luck with doctors just pushing pills at me without actually fixing the underlying issue. She said “he’s not like that. If he can’t fix what is wrong or if you are too severe of a case he will tell you who can”

SOLD!

I’m trying not to keep my hopes up. I’m trying but my hopes are high at this point and I just don’t want there to be any sort of let down. I keep thinking every doctor I see is going to be my miracle and every doctor thus far has been my downfall.

So here’s to new found hope. Oh, I forgot to say, he’s getting me in THIS monday. That’s fast. Wish me luck.

Don’t you hate when you wait so long just to see a doctor who comes in, diagnosis you or fixes whatever it was you came in for and he’s walking out the door 3 minutes later telling a short mild lame joke.

I had such high hopes that my new Rheumatoid doc would be “The One” who would fix me and make me all better. He gave me 5 cortisone shots from the top of my spine all the way down to the end of it since it’s been such a huge pain source for me lately, told me my labs looked fine and was nearly out the door before I’m like, um, wait. I was just in the hospital 3 weeks ago for Bronchitis which caused Hypoxemia in which I’m STILL on oxygen 24/7 for .. I definitely have some questions. So we went through my labs he did a month ago and every question I asked he danced around and basically didn’t answer. Even the simple yes/no questions. Then he changed my meds on me without us talking about it and I’m slapped an appointment card and rushed out the door.

Another what I like to call “Band-aid” Doctor. They slap a band-aid on you and throw you some pills without actually fixing the underlying issue. Pisses me off. I’m so frustrated/discouraged/angry. Is there any doctor out there that is actually helpful anymore?

I’m really bummed about this. I walked out of there feeling worse than when I went in (not every day you have 5 needles in your spine, ouch).

Talk about an interesting day. I’m sitting here in my office reading my email this morning, just like I do every morning. Brendan was still sleeping so I was trying to be quiet. Jonah starts getting really antsy about something going on outside which he does from time to time, like when people walk their dogs down our cul-te-sac, or if there is a cat walking by or something so I didn’t think much of it. Then he stands up and desperately starts howling. I notice that the dogs next door are also barking more than usual. I get up and go down the hall and I see this mexican coming in my back door. I see him, he sees me and he bolts. He jumps the porch, then jumps the fence, then runs down to the road where he just walks non-chantantly like he owns the neighborhood.

While this is going on I’m waking Brendan up and I’m dialing the Kennesaw Police Department. They got here in a matter of minutes. At first the cop just wanted to know which way they went and he went walking through the woods toward the area I pointed him to. He came back and pulled back up in front of my house and behind him came 3 other police cars. He told me he was sure glad I called because a house was robbed in the neighborhood right behind me which fit the description of one of the guys I told him about. While all this is going on I’m standing at the very top of our driveway. A lady cop gets out of her car and comes up and says they had caught two males and they needed me to ID them. They pulled each one out of the car and stood them up in front of the police cruiser and right away I knew that was the guy that was in my house. When they pulled the other guy out, I told them that it looked like his hair, but he was wearing white before. When he was standing there he had a green shirt on. They pulled a white jacket out of the cruiser and I told them that was definitely the other guy. As I ID’d each guy they put them in handcuffs and read them their rights.

Brendan and I both had to write out a witness statement about the encounter. We learned that one of the robbers was armed. SCARY! That picture I took was the 4 police cruisers out in front of the house. The two back ones each had one of the robbers in it. The police came in and petted Jonah and told him what a good boy he was. If it wasn’t for him howling in a de-stressed way that I wouldn’t have caught him just walking in. He probably would have had his pockets full or hurt either Brendan or myself. I caught him when he had two feet in the back door leaving the back door open. Ugh, scary!

When the police left all my neighbors had a little get together in the middle of the cul-te-sac to talk about what happened. All of us admitted that we leave our back doors open mostly all the time due to this being such a safe and quiet neighborhood. I also found out that Brendan and I are the only ones that don’t down a gun. I told them if I ever needed one, I knew where to go. Not sure about having one in the house yet. Still undecided about that.

I’m wiped out after being outside for so long without my oxygen and really short of breath. Stupid lungs. These are desperate times and I’m sure lots of safe neighborhoods are going to see this sort of thing. It’s sad, but I guess we gotta do what we gotta do. I’m definitely making sure all doors are locked at all times from now on. This is my house dammit, and I’m not about ready to let them make me feel unsafe in my own house.

My dear sweet MIL (Mother-in-law) usually sends me very insightful emails. Among them are Insights from the Dalai Lama. Every day it seems to be exactly what I needed to hear. So, my dearest MIL, thank you for sharing such wisdom.

Insight from the Dalai Lama

“What irritates us in the first place is that our wishes are not fulfilled. But remaining upset does nothing to help fulfill those wishes. So we neither fulfill our wishes nor regain our cheerfulness. This disconcerted state, from which anger can grown, is most dangerous. We should never try to let our happy frame of mind be disturbed. Whether we are suffering at present or have suffered in the past, there is no reason to be unhappy.”

That’s the mode I’m in. I’ve been asleep more than I have been awake in the past 24 hours and I’m ready for sleep again, already. My energy is extremely low because I haven’t been eating properly. I’m craving red velvet cake for some reason, but I managed to keep down some yogurt.

It’s been a very emotional day, especially between my Mother and I. She’s trying to help and as much as I know this it’s been hard.

I even had a talk with my Aunt Donna today on the phone and she said something to me that she’s never done in my life. She said I need to get over my anger. She told me to write down everything that was making me angry, put it in box and keep it there and “GET OVER IT!!!!!!!!!”. My Aunt Donna suffers from Fibromyalgia too which make the whole conversation surprising. So I did that. I wrote down everything that I was angry at, and I put it in a box and I put that box up on the shelf. It actually helped. Then came the tears, the “I’m sorry” and I accepted how rotten I’ve been over the last few days. All the grieving and mourning I haven’t done is on hold and put aside. I finally found my phones that were safely tucked away in my purse and I heard from my Uncle Joe and Aunt Martha. There is something about their words, and them calling that tears me to pieces because I love them so much and for so many years I thought they stopped caring.

Fact is, I’m not getting better. I’m still hacking up green phlegm but not as much as before. Its like it’s getting better and breaking up but it’s going deeper into my lungs. I’m going to bed here shortly so we’ll see how I am tomorrow. I still need to order my prescriptions and pick those up tomorrow but I’ve been asleep all day and I’m tired of Mark invading my dreams.

I’m extremely scared for my job. What if they don’t take me back? What if … what if …

I found something I wanted to share again because my guild master had asked for it. It will be under the read more part so this entry doesn’t take up a million pages.

(more…)

No. I didn’t get fired. I have been in the hospital for the last 4 days however with bronchitis, pneumonia and sever asthma problems due to each. I am on strict home oxygen for a straight month. I am not allowed to return to work until the 13th :: glares at doctors note :: and only THEN will it be decided if I get to return for the remainder of the month while on oxygen.

You know why all this is happening? Because some fuckhead felt like coming to work sick (I know of one of them specifically who had bronchitis and girl, you and me are going to have words because I heard at least 5 people tell you to go home because they didn’t want to get sick) because she didn’t want to lose her job. Not once did she think, oh wait, we have people in the office who are on remission from cancer, or people with auto-immune diseases like Fibromyalgia who are magnets to this shit. That’s not even the bad part. This shit put me in the hospital and she’s sure not paying my hospital bill. I’m fairly certain they will have to put someone in my place temporarily until I get back (as my boss promised if I had to ever take medical leave, which, I guess is a test now because my hands are tired. Completely) So because this bitch didn’t want to lose her job or whatever, I got what she had and I when I was in the ambulance on the way to the hospital overhearing the EMT say “Ah shit, she’s dropped below 70, upgrade this to critical, stay with me now Jenny, come on Jenny, stay with me Jenny .. can you see me … grab my hand Jenny I was remembering her selfish little words. Pffttt, I don’t want to lose job. I was hoping not to die at that point.

So with my permanent lung damage (like I need more) I’m going to have to call up my boss tomorrow and explain to him that, yes I could do the job. I’d be in right this very fucking second doing it if they would make sure that sick people did NOT FUCKING COME TO WORK. Now I have hospitals bills, I’m strapped to oxygen to keep me alive seeing this promotion slip out of my fingers so fucking fast I didn’t even get to taste victory yet. I’m sooooooooo mad. I’m soooooooooooo pisssed. I had zero choice in this. ZERO.

After the 13th, if they let me work from home I could do that but it’s hard to manage a team that you don’t even see every day. One other person’s wrong choice cost me this. I’m not about revenge, I’m not about payback, all that is bullshit. I am about bringing into prospective what people might have missed tho.

Anyway, my doctors card and me. The good news is I lost 3 pounds past my 50 lbs for the first of the year. So, thats 53 pounds in 59 days. There it is, this is almost a death sentence to me. Going to work actually MAKES me feel better so it’s going to be a long 10 days of getting cabin feather. I do have 5 portable tanks with me but just one of those portal tanks only lasts 4 hours. As for the poor me, I’m getting daily nose bleeds from a dry noise.

The only good thing about the whole experience was I got to walk talk and mingle with this harp player who comes and just plays healing music to everyone who wanted to listen. My roommates thought Jerry Springer was more interesting.

I felt better today than I have for a week and a half. I’m in the middle of changing and switching some of my medication around which has resulted in horrible side effects making me feel completely horrible. Hopefully I’m on the up-swing at this point. The next hurdle is meeting my new doctors on the 23rd of this month in which my Mother is flying over for. Now that I know I have Fibromyalgia along with Rheumatoid Arthritis I will be seeing a husband and wife team of Rheumatologists that have experience in both diseases.

I’m really disappointed in my doctor at the Fibro & Fatigue Center. I found out that he read some of my labs wrong (have I mentioned this yet? I don’t remember) and so I’m off most of the medication he had me on. Well, I’m off at least 7/8ths of the medication I was before and I’m already noticing a change and I’m already noticing that I am feeling better. Plus, the nurses at the Fibro & Fatigue center here in Atlanta have been dropping the ball left and right. My doctor wanted to see every 3-4 weeks and he’s booked solid for the next 3 weeks which means I won’t see him for at least 2.5 months which means, I’m going to be running out of medication .. and FAST. Hopefully my new doctors will work out and I can make an easy transition. Oh, and get this. Dr. C at the Fibro & Fatigue Center treats all his patients with the same plan of action so no wonder I wasn’t getting better. I’m just really disappointed in the center when at first it gave me so much hope. Maybe I was grabbing at the last rope I thought was out there, I don’t know. I just have to find what works and I know it’s going to be a frustrating battle and my patience will tested big time, well, sort of like now.

So with everything going on, having some severe medication changes, getting sick, being way over-emotional, fighting with the hubby its affected my performance at work and I only hope that they will find some sort of empathy and be patient with me too. The only thing that hasn’t gone away is the pain, so I’m still dealing with that. It’s hard for people to understand because I look well but everything under my skin, including my digestion issues and IBS is a complete mess. I just need all this to come together, and the sooner the better. Not only for me, work, but for family friends and everyone else that is involved. I’m trying my hardest to hang in there, I really am.

Went to see “Hotel for Dogs” tonight. It was one of those cheesy Disney stories, but it was pretty good. Nice and light and funny. I knew the ending as soon as it began but .. I thought it was pretty good. Good, no, maybe just cute. It was cute.

I gotta go to bed now, I’m tired.

So I’m watching “Trauma: Life in the ER” .. This guy comes in after getting beat up in a bar he frequents often. His face is all bloody, he looks like death warmed up to luke warm. He’s a self admitted raging alcoholic. They call in a social worker and she starts to explain to him about this option of going to a treatment center. Dude starts crying. Social Worker says:

Sir, can you please tell me why you are crying. Sir? SIR? SIR?!?!?

She’s practically yelling at him to give her an answer. I mean, gah. Let the guy cry it off a little. It’s probably not something he’s done for a while, let him accept the fact that he’s all fucked up sitting on a bed in a hospital gown with his bare ass hanging out for passer-by’s to see getting yelled at by a social worker yelling if he wants to go to treatment. Why do you THINK he’s crying lady! Gah!

I went to the Cobb County Toyota Dealership today. Well, I did the right thing and I called first and told them that my car has been dead every morning this week, what should I do? They said:

“Bring it on in now if you can, your under warranty and we’ll just switch out your battery. It probably sat on the lot for too long or something. Should only take around 25 minutes.”

Hey, the dealership is right around the corner from work, sounds great right? I’ll just hurry and go before my meeting in an hour.

So I got it in there and they took it back and told me to sit in the lobby. If I don’t have a clock visible I tend to loose track of it, but I did win 4 games of sudoku. I look at my phone and an hour had past. My meeting had started. I was still sitting in the bloody lobby at the Toyota Dealership! I go to the front desk and ask them, where is my car? Lady can’t find any information about my car. She’s walking to the back and she tells me that they are checking my breaks right now. I’m looking at her puzzled and I walk back to where they are fixing all the Toyota’s and saw mine all the way in the back with the wheels off, the doors off, way up high on those .. those .. you know, LIFTER THINGS and I see a tech come around the corner. I asked him what the hell he was doing with my car all taken apart??? This was supposed to be a 25 minute battery change. Ummm .. ummmmm. Some old guy comes around the corner, tells me they will get it put back together and put me on my way. On my way was an hour ago at this point. I had already been at the dealership for an hour and a half. I walk back to the lobby in tears, thinking the worst about this meeting I’m supposed to be at, my actual job since I told everyone I’d be back in 30 minutes, and my car was in a million pieces. Ugh. In another 15 minutes they had my car out to me. How many screws and bolts did they forgot to put on getting it together so fast? When I opened my door the first thing was the panels on the drivers side were all hanging down and the panel on the bottom was completely gone. There was a nice greasy black stain right on the passengers seat. Still in tears the guy that drove my car out said:

Um, well, we don’t have clips to fix that so you’ll have to come back. I’m not sure about your battery …

Fine, Fine. Give me my brand fucking new car where the inside is in pieces and the seat looks like something my Dad would have done before taking his shower after being in the shop all day.

I had to call the cops on my neighbors again due the blaring bass music vibrating my house.

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.

There is a new program that is airing on October 1st on the Discovery Health Channel called Autism x6. It’s about this married couple who have 6 kids and all of them have been diagnosed with autism. My husbands little brother is autistic and because of that I’ve been educating myself on autism. My Brother-in-law is 21 years old now and still lives with my Mother-in-law and Father-in-law.

My Mother-in-law and myself have talked a lot about austsm and I’ve seen some other program about how hard it is on the family, and that’s just with one child. This program is about how this Mother and Father have 6 children with autism, some not so severe, some who are really sever.

Anyway, I have it set on my DVR in case my MIL wants to see it.

Sorry for all that have called in the last 3-4 days. I’ve been bed bound with pain.

Saw the doctor again today and I’ve been put on a Fentanyl Transdermal System (morphine patch) along with more pain meds and countless other meds. I’m so tired of meds. I’m also being tested for Lime Disease, Ebson-Bar, Celeac, and I forget what else. I haven’t been to work all week and called my boss today to let him know what’s up. He said he’s been worried and he’s going to try and get most of my hours on call because I’m the only one he trusts (beside himself) for priority 1 & 2 issues. I told him I have to come in at least 3 times a week because I need to get out of the house for my own sanity, he said he understood. I’m finally feeling better tonight.

Things the last few days have been complete hell. I’ve never felt so much pain before.

:: cries ::

Have you ever had a great idea that you are excited about, or you come to some sort of decision or idea only to forget it later, lost forever in the grey matter sitting on top of your shoulders? One of my major goals in life lately is to reduce as much stress as I possibly can right now. Not only am I don’t it for health reasons but I’m trying to get everything (GTD, tasks, projects, ideas, lists, insert other things I’m forgetting) in some sort of organized fashion.

So, I’m taking one of XV’s idea’s and applying it to my everyday life. I have myself a notebook (my favorite one) where I can purge my brain. So far it’s working out incredibly well. I had a big homework assignment due tonight and I didn’t have the bottleneck anxieties infect my ability to concentrate and write code.

I just need to keep it up and not quick since it’s so easy to blame procrastination on lack of time. Lack of time is a huge reality for me but maybe if I can get a handle on my time management I can reduce the stress of it.

I started writing again. Most won’t understand that statement. Very few will find the significance and see it as comparable to someone who scaled a mile high brick wall.

I held your hand so many years
And my heart screams the absence
The confusion blocked by crimson hatred
Echo of my cries return the monster inside

I ride this denial like it doesn’t hurt
My angst hidden behind the curtain
I shove my hand in boiling water
Expose my flesh hide my heart

My eyes speak chaotic disarray
In your direction running the
Opposite course of your soul
Played like a board game kept in the closet

I’ll never forget, I’ll always miss
My past holds on speaking over you voice
Not giving you the chance
To slam the door as you walk away.

I’m having a really rough week. I couldn’t even go to work yesterday because everything hurt so bad I didn’t even want to get out of bed. Then today, due to the heavy rains I slipped and fell at work. Slipping and falling isn’t such a big deal for most people, but when you have Fibromyalgia it’s a snowball rolling downhill getting bigger and bigger. My knee is all bruised up and hurt for a little while. A few hours lately my whole leg started throbbing and burning with pain. Add that to the upperback/neck flare that I’ve had for the last week and a half. It doesn’t matter how many pain pills I take, the pain .. just .. never .. goes .. away.

I want to throw myself down and kick and scream and pound my fists into the ground in a full out tantrum, just as some sort of distraction from the pain if only for a few seconds. I get so discouraged and isolated with it. Even more, I’m angry at it.

I’m angry that I can’t be fixed, like you can fix a broken arm, or a headache. I’ve also come to hate the word “chronic” … I don’t want to be associated with that, I don’t want to live on the same planet as that but weeks like the one I’ve had, reminds me that I can’t get away.

Each week when I go in for treatment I talk to the ladies who are also getting IV therapy and we all tell our story. It’s almost like a support group while being pumped full of medicine. Some of these woman (and the occasional man) have amazing stories, and some of them are stories filled with sorrow.

One girl in particular who is around my age said that she lost all her friends, due to the mood swings, the constant fatigue, being hyper sensitive both emotionally and physically. She said the only ones that supported her before and after diagnosis was her parents and her husband. An older lady had the same type of story because her friends thought she didn’t want to do anything socially because she was being a snob, when in reality, she was bedridden and barely making it through each day. Then she started tearing up, saying she missed her friends so much. Naturally, if one woman in a room of women is crying, she was handed 3 boxes of kleenex and several hugs (as we tried not to get tangled in each others IV lines hooked to our arms.

I guess I’ve been lucky in the fact that I only lost one. Everyone in my life a few years short of a decade have stuck around and road the roller-coaster with me and it’s been one bumpy ride.

What gives me hope are the ladies that come walking into the treatment room with energy and light and you can see in their face they feel good. They always tell me the same thing. Hang in there, follow your doctors directions, take your medicine and supplements, and keep it up. It’s not an instant cure. There isn’t a cure. But there is such thing as living a healthy, energetic life with managed pain. These women have been going through this treatment plain with Dr. C for 8 months to 2 years. So, there is light at the end of the tunnel. I just need a bigger basket of patients.

I’m still recovering from feeling like dog shit at the end of last week and over the weekend. Health complications, as usual.

I’m bombarded with make up assignments in school after missing the last few assignments in my Java class and with my nose to the grind I’m trying to get those completed both tonight and tomorrow before I have another class that begins. Ugh. I’m also on call for work somewhere this week. I also haven’t made an appointment for my treatment day. Ugh. So much to do, so little resources.

Now to get started hoping that there isn’t an emergency at work …

It was odd today, being in the house all by myself. It was Brendan’s first day of orientation. He got to learn all about Publix and was forced to be social. Due to his painfully shy nature, I think it was good for him and gave him a bit of confidence. Shhhhh, don’t tell him.

So what did I do while I had the house to myself? Well, nothing that I wouldn’t usually do. I read my RSS feeds, I watched the Olympics, I played WoW, and remembered to take all my meds. I didn’t have a bubble bath surrounded by candles, I didn’t run around the house naked, I didn’t do anything other than the usual. It was still nice

I got a memory foam mattress topper for my bed. Its like soft quicksand when you lay down. Boy was it nice. I slept the entire night without waking up once.

I better to pay attention to Karazhan …

I’m a bit pissed of at WoW tonight. This is the second time I’m getting caught up in this mess. I level a character with others saying “yes yes we’ll play together, blah blah” and “why aren’t you 70 yet” “I can’t wait till your 70″ blah blah … and yet, they don’t help me level, they don’t even play with me (ok, maybe twice, but still)! Classic sucker, that’s what I am. Gah people are so fucking selfish.

I did just pass the 60 level mark with my new alliance priest. I missed healing, I’m a damn good healer, it’s just my character. Mage is too, when I’m in a mage mood.

Getting up early tomorrow to see Brendan off to his first day of orientation for his new job. Just weird. I’m going to have 6+ hours all to myself. For the first time we’re going to be car swapping. Having one car all the sudden, sucks. With gas prices, what’s the point of two cars? I could totally see myself on one of those little scooters. My husband and my Mother already said, no. Damn.

I’m downloading LOTR Online, on Crossover Games. I have a level 8 Lore-Master who throws ashes from her pocket. It kicks ass.

It’s amazing what going home can do after a horrible day at work. Just being “home” .. I still will never understand how I happen to find this house but every single day I turn that corner and see this forest with beautiful huge trees and this warm “your home now” house hiding under the greenery. I still haven’t found quite a lovely looking property. The dance of the millions of fireflies in the back yard when the sun disappears and the stars twinkle is truly surreal. I want to try and capture this beauty sometime on film, but I’m still fumbling with thoughts on how to do this with the camera’s I have, and not dishing out several grand for a professional type device.

Speaking of lovely things. My nieces.

My little (not so little anymore) Sharon and Savannah (I’m positive she gets her green eyes and tint of red hair from me, hehe) I love those girls. I need to get back out to Texas sometime soon and spoil the heck out of em. Yes yes, I know sissy, sooner than later, right?

I love add-ons in firefox. I love them to the point that I over do it sometimes. I install experimental ones. I experiment in writing some. That leaves my Firefox very bloated and swelling with a bunch of nonsense that doesn’t need to be there. The best part about it, is I simply Export my bookmarks, AppZapp Firefox, re-install and import bookmarks to start all over again on a clean plate.

Firefox, I love you.

MacBook Pro, I love you more. You make my life smile.

With receipt in hand, my new iPhone won’t be here till Wednesday, but I couldn’t wait any longer.

Heh.

Sometimes you have to indulge on what makes you happy, so you can temporarily forget about the monster that’s destroying my body.

It’s been a pretty busy and hectic week. I feel like I’m panting in exhaustion just thinking about the range of emotions that spun about.

The first incoming news on Monday was incredible news to say the least. My husband has finally found a job at Publix. When he called me at work I nearly jumped off my chair with excitement. I went in with him after work to take his drug test and all that stuff. One of the managers I met there was really nice, except she talked really really fast. I wanted to tell her to take a breath. By the time she was doing saying whatever it was she was saying she was almost gasping for air. It made me giggle inside.

So with exciting good news, came my IV treatment on Wednesday. They couldn’t find my vein in my right arm and after 2 sticks and a lot of digging around for a vein UNDER my skin did the nurse try for my left are. Two more sticks, a lot of digging and eventual infusion (where the medicine goes under your skin instead of in your vein) did she bypass trying again and finally got a vein in my hand that didn’t try dodging away. Sure is a good thing I’m not scared of needles.

Usually when I go through treatment the first IV bag of medicine is always the worst. It makes me feel sooo ill. I sit there and squirm while I’m having cold sweats wishing the hour it takes for the medicine to get into me would hurry along. The second IV bag is cake. No pain associated with that one. Its like the cool down from a vigorous work out. The ill feeling always seems to come back in an hour or two tho, and last throughout the day. Only 10 more courses of treatment left. Sigh.

Starting next week I’m going to have to give myself my own shots, 1-2 times a week. Like I said before. Good thing I’m not scared of needles.

Sad news came yesterday, when my Mother and I sold “The Farm” .. the place I grew up. Where the memories of my Father still remain locked in my head. It was very emotional for me. I cried off and on at work even, trying to dab the tears from my eyes at work so no one would see. That’s the last piece of my childhood left that I was holding onto. It’s for the better, especially financially, but it still stings.

So today marks Friday, and I’m glad to have the next two days off. I’m exhausted, and in a bit more pain today than yesterday. I just want to go home.

“The future doesn’t lie ahead of you, waiting to happen…it lies deep inside of you, waiting to be discovered.”

I’m one of those poeple that has a TV on in my office even if I’m not watching it. It’s more for background noise, white noise, whatever you call it. Well, one station I usually keep it on is crime TV since it’s a lot of talking and sometimes they have interesting things on. So cops was playing tonight and they had a special Cops episode called “Party Girls”.

When I hear “Party Girls” I think of some sorority girl from a rich family in Cancun drinking like a fish while hanging all over every guy she walks up to pulling up her shirt and flashing every camera she sees. That’s not what this espisode of Cops is about. It’s about girls out on the street prostituting.

I feel sorry for some of those girls. There is one single reason why any of those girls are there, and that is a bad situation. Their home life was shitty, they get kicked out of the house at a young age, they get addicted to drugs to hide and numb their pain, or they have other emotional problems. Whichever the case, I bet if you asked any one of girls if they are where they want to be, they would say no. No one wants to grow up to be a prostitute. No one wants that life style. When I think of party girl, I think of a irresponsible college teenager having fun. I don’t think of a girl giving away the very being of herself to strangers, who’s so miserable on the inside she convinced herself it will be ok.

Sad. What’s equally as sad is the sorority girl will never have empathy because she has that silver spoon in her mouth to keep her from crying, otherwise known as Daddy’s wallet. I don’t know which is worse.

The pains that have been torturing my body for the last few weeks, decided they were at a rock concert in a mosh pit. My feet started swelling up the day before yesterday. I couldn’t sleep, I haven’t had an appetite. Last night, while I was soaking my feet in the tub for some temporary relief I noticed that my toes, weren’t anything like I had ever seen them before. They were completely blue. I take a picture of them (I take pictures of everything, duh) and send the picture to my Mom. She in turn sends it to my Aunt Donna who shows my Uncle Don (the doctor).

Ohhhh boy. I knew something was bad when it was 11:30 at night and my iPhone started ringing off the hook. It’s a well known fact that my Mother is horrible at telling me bad news. My Aunt Donna has had “The-One-Who-Tells-Jen-Bad-News” title for about 15 years now, so I automatically assume if she calls me (especially late at night) that it’s not good. I couldn’t bring myself to answer the phone. My Aunt Donna knows this well too. It’s my way of sliding “into” the news. This is my Aunt Donna’s trick. She will leave me a message, and she will tell me right off the bat that she misses me and loves me. Then she doesn’t tell me anything about what the bad news is, except that I need to call her right away because she needs to talk to me and she, Uncle Don and my Mother weren’t going to sleep until I did, and it was very important. Then she ends it with she loves me again. She’s so good at this, and she’s also so brave at being “The-One-Who-Tells-Jen-Bad-News”. Believe me, no one wants that role. No one.

So, I get myself a glass of milk and waddle (I have to walk on the heels of my feet because of how swollen my feet and ankles were) out to the back porch and touch the Call Back button. I sit and listen. She’s very good at explaining things without actually telling me the bloody details while giving special care on the urgency of the matter. Then Uncle (Dr) Don gets on the phone. He sucks at telling me bad news, but he usually doesn’t get on the phone. My Aunt Donna quickly takes the phone back and I had agreed to go to the ER by the time I had hung up the phone, but ONLY until I took a shower first. Aunt Donna said it was fine, but to please try not to doddle (I learned the word doddle from her, I love that word).

Shortly after that, somewhere in between calling my Mother, taking a shower and doddling, my brain sort of unplugged itself. That’s the best way I can describe it since the next 1.5 hours are really fuzzy in my head. I could hear what Brendan and my Mother were saying to me, but I couldn’t match up the words. I was confused, and nothing made sense. It’s like everyone started talking in tongues. Brendan tells me that while I was in the shower I asked him what I was doing. My Mother called while we were in the car on the way to the hospital and she kept asking me how far from the hospital I was. I just couldn’t understand the how far part, like my brain was skipping like a scratched record. I had to keep asking Brendan for help. When I got to the hospital I couldn’t tell them my birthdate, except that I wasn’t 30 yet. I just couldn’t figure out anything past that. When the nurse asked me what year it was, I said that I knew it wasn’t 2006, but I couldn’t give her the year. I guess I did know that Bush was president tho, altho Clinton was at the tip of my tongue. I felt so, dumb. My brain, got stuck, and after the nurse asked me more questions I couldn’t answer I just started crying. I mean, I know I should have known that stuff, but … my brain was just stuck. I knew enough to know that wasn’t right or normal. That’s when I got scared. Something, in me, broke. Something just wasn’t right, something was really wrong.

For the next 6 hours on an EKG I had three IV’s stuck in me and I was just staring at the heart meter, watching my pulse and pulse oxygen level. Just watching. And then my brain turned back on. It went from pause to play again. Ironically during the foggy time, I don’t remember as much pain. I just felt like my toe was dead. When my brain turned back on, pain from all over my body throbbed. Blood test after blood test were taken. When one blood test came back as being fine, another one was ordered up. At around 6 or 7 AM the doctor came in the room (he had only been by for about 25 seconds previously just to ask what was going on) he said that they couldn’t find anything wrong and they were going to send me home with water pills to help drain the swelling, and to follow up with my primary care physician.

Just like that. Not only was I more swollen (my hand was starting to swell at that point), but I was mad, stressed, frustrated at being dismissed when nothing had really changed (besides my brain going from the off to the on switch). Everything my Aunt Donna told me she was scared of happening, happened in regards to how the doctor was going to dismiss it and to be persistant). I again asked him how this had happened before in 2002 and how I’ve felt so horrible the last few weeks, and how my tests always come back showing good stats, but obviously there was something really wrong. He said to see my primary care doc and elivate my feet in the meantime. Here is what just one of my feet looked like. I thought if I went to sleep, I’d wake up and my toes would dead.

I won’t go into a tangent about how I hate healthcare in this country. If no one has seen the movie “sicko” then see it, please. It’s such bullshit. Brains don’t just “turn off” and body limbs don’t swell up to the point of cutting circulation randomly or by a fluke like travel or such. It just doesn’t happen.

So, me and my balloon feet are going to see my primary care doc and go through the whole thing again, with a new set of bloodwork and repeating events of the last few weeks. And I’m scared. I’m scared that they still won’t find anything and I’ll still go on with all this for the rest of my life wishing for one day, I could get through the day, without pain. I just want to feel good.