.:: Yolospat ::.

With my oxygen tank in tow. There are a few things I need t pick up at Lacy’s Pharmacy. Due to past experience this oxygen being administered via nose cannula does two great things. It makes sure the body gets the oxygen it needs, and it also dries out your nose to the point of daily nose bleeds. Vaseline only goes so far. Back in 2004 I remember that my nostrils were lined in bloody scabs. I don’t want that to happen again, so I’m going to get a mask and alternate.

How am I feeling? Well, I wrote a big long email to work about the situation and everything that was going on and I heard nothing back, which only means one thing. They are planning my hopefully “temporary” replacement. I have heard back from my boss and his boss however saying to take as much time as I need to get better. That was nice. I just don’t do good sitting idle so I’m going to learn something over this next week and it’s going to be amazing. I just don’t know what it’s going to be yet. Maybe I will drive into ruby and learn rails and gems.

I’m pretty certain I can make something really neat and cool with that to come back and WOW everyone with. I’ll try at least. I usually only WOW myself. WOW.

I’m digging out my ruby books now … and spending the rest of the night in programmers heaven (best time is when everyone’s asleep, like now)

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.

This day comes to be bittersweet. Today 10 years ago was the last time I saw my Father alive. I will never forget our day, and our fights we had that day. We parted so upset with each other that we were on a non-speaking basis. Then I get a call from my Aunt Donna who brings my Mother over to my house to tell me the bad news. He’s had a massive heart attack and he died. A small part of my being always held that shame that it was my fault he’s gone, that I was the one that broke the camels back. It never occurred to me his father died when he was 20 from heart disease, and his father before him. Through the years after that that shame and guilt took over me and put me in very bad situations for nearly a decade. It wasn’t a few years after his death my pain of losing my Father became pure knock down hatred and anger. It’s been that way for years. I hated him, because I started blaming him for all the difficulties in my life. For all my destruction, trying to replace him with men who would just use me and beat me, suck me dry and leave me (except of that was Jason, and I wouldd tell him my fears that by the time we got married my Father would be gone, I was right). I blamed him for ever tear since he died. I hated him for the life that he wasn’t there to save me from, consciously knowing he couldn’t save me. He was DEAD, gone, and not coming back. My whole life the only one that ever took care of me was myself. My Mother and I didn’t have the Mother/Daughter bond that some kids who are adopted never have. It wasn’t that case with my Father.

He was a hard working man. The most hard working man I’ve ever seen my whole life. No man could ever fill his shoes. When my Mother started dated her “special friend”, I despised him. He wasn’t anything like my Father. Who was this man that put a twinkle in my Mother’s eye, who treated her in a way Dad never did. I went into denial about this man who spent MY time with the Mother. Time she should have been spending with me, but I never could let that twinkle in her eye go. This was one she’s never had before. She was never funny, and make me laugh all the time. Of course I thought it was because of ME but the place I was in was nothing even close to being a twinkle in any Mother’s eye. It was something that a Mother would hide and sweep under the rug. It seemed like everyone had forgotten about me. Mom was healing, everyone else close to Dad was healing except me.

This year, I think I’m finally healing. Not only healing from a painful path, or the horrible things I went to, but healing. I’m more or less angry about them all right now. Isn’t that the second step that comes after denial? I think so. I’m getting there. And It’s been all by myself. All my myself was the first sentence I said when I was a baby. So far it’s been true, up until now, when I’ve had to lean on my husband more than ever. That was another teaching and learning experience that I fought for years. Now I know it’s ok to learn on your spouse. I know he leans on me quite a bit. It’s ok for us to lean on each other equally.

So now I’ve come ten fold. I’m finally “growing up” as they might say. I don’t have only me to be When Brendan woke up this morning I was surprised by my Valentine’s day Presents. This is the second holiday holiday we’ve managed to get each other something.

That necklace is a deep blue heart. It’s beautiful. The other night he told me he loves holidays now. He never had traditional holidays and I’m born from and my roots are full of deep traditions that I use to dispise until I got married. Then I started thinking, what do I want my kids to have? I want them to have what I did. I want them surrounded by family. On holidays I want to be surrounded by family. Not family that just put up with you because you were present, but true loving family (in my world, my friends are family too, no doubt.) Family is who loves you. That’s what I want to be around. I wished we could have gone to Fort Knox this weekend if Brendan didn’t have to work, and if we would have planned it a little better. Anyway, I got Brendan a really nice watch this Valentine’s Day. It’s one of those that never needs the battery changed and I don’t want to give it all away if he reads this from work (guess I sort of did already). More to come later.

Plus, I feel asleep writing this post or about 6 hours. My new desk is just too comfortable. I love it to death.

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.

I hadn’t installed MacPorts since I reinstalled OS X and it feels good that its finally back So much easier to install programs. Plus, I’m a geek. What “normal” user would actually go through the mess and even the understanding of MacPorts. Heh.

So I’m going to try and condense down the Colorado trip the best I can. I’ve noticed that when I”m really emotional about something the best time to deal and/or write about it in a political way is after the fact once I got all my bearing straight and the emotions don’t out talk my logic.

The first night I got in Uncle Don and Aunt Donna meet Mom and I at at the Armadillo in Lasalle. I couldn’t believe how much some parts of the towns had changed, and how other parts of the towns hadn’t changed at all. Like for instance, Platteville. Still the same. The old house I grew up in still looks the same. Grandma Berry’s house still looked the same inside and out. See, Grandma Berry can’t see much more than light or dark but when I got up close to her she grabbed the bangs of my hair and started whispering “jenny jenny jenny jenny jenny” and when I finally spoke and said “Yes, Grandma, it’s Jenny” she started crying. She can’t forget me. I might not have been home for 4-5 years but you can’t forget living right next door to your grand daughter watching her grow up all her life. Seemed like my Mother and I showing up was center of attention and we all know how much I hate that.

I got to see some women, whom I used to give piano lessons to and babysit sit. Now they are grown and have more children than I have pets.

Of course going out to the farm made me miss Uncle Joe and Aunt Martha so much I made Mom promise she would set up a meeting with them too before I left to go home. took pictures of Morning Fresh Farms and then jumped down to Mespaigh cemetery to see the ranch and to see my dad. He was doing ok. I talked to him a bit. I think Mom did too. Sort of weird talking to stone, but whatever. Seems like that was a completely different life back then when he was alive. I think we were all different people back then. I’m sure I would have had a whole different life. Would I change it? I don’t know where’d.

After all the crying and seeing all the family I met all my friends up at the Armadillo in Fort Collins. It was strange. It was so surreal I almost felt drunk without drinking.

It sure was a great night. I never realized now much I missed my friends until that very moment. I had never felt so home sick, for everything back. For my old job back, for my old house back. Not my old life tho. No way. No how. I told them next time we come I’ll being the hubby so they can all meet them. I only want to talk about the good parts of the trip so I am going to not talk about doctors and appointments and news and all that other stuff I went to to. I sure didn’t have problems falling asleep at all.

In hospital since Saturday. Sorry for those I don’t respond to. Thought I left this whole Asthma mess (and chronic broncotius) in Colorado.

Seriously, I can’t take one more thing, no matter how small. Not one more.

Other than sleeping all day, I did manage to clean up the kitchen and put all my meds that require needles in baggies so they are right there when I need them instead of going to 3 different places around the house looking for what I need. I still have the other half the kitchen to clean which is going to be project in itself.

Mom called me tonight to let me know she got an invite that my Grandma B will be having an open house 90th birthday party. She’s been really really sick lately and they don’t expect her to live much longer, so this is really going to be the last time I’ll probably ever see her.

It will also be the first time of me returning to Colorado since I left so I’m excited about that. I’ll be gone from the 18th to the 20th. For all my Colorado friends, call me, IM me, email me and we’ll all hook up. I miss ya all. The first place we’re stopping once I get in Colorado on the way home is the Armadillo, the BEST mexican food restaurant EVER!!!!!! I’m so excited about that. My mouth just started salivating.

I have yet to find a good mexican food restaurant here in Georgia and I have tried lots and lots and lots. I just can’t wait to have me some good, authentic Mexican food. I’m hoping to see my Aunt Donna and Uncle Don while I’m there, along with my Aunt Martha and Uncle Joe. I hope! I wish!

And, for being awake for such a short amount of time, I’m ready for bed again. I hope something starts helping me soon, oy!

Right now I’m working on removing some twitter accounts that I don’t really care about, so if you see you got removed, don’t take it personally. I’m just missing a lot of tweets from people I want and need to see tweets from. My list is way too big.

I had 5 scheduled interviews today, and 4 people that actually showed up. The third guy we interviewed actually FARTED in the middle of his interview. He got really nervous after that. I was so shocked I couldn’t speak for a few minutes. I mean, who farts in an interview? Weird.

The last guy we talked to I liked a lot. Hopefully we have better luck tomorrow.

I got an iron IV this morning. I thought for sure it would make me sick but it didn’t. I actually felt pretty good today. It was one of my “good days” ..

Finally heard back from the folks at Xyrem. I’ll be calling them tomorrow to see what all I need to do to get my meds.

Sleep study is set for Sunday night. I’ll be fitted with a c-pap for the sleep apnea. Doesn’t that sound like fun. I love having devices on my face for a good nights sleep. At least I will be going OUT of Atlanta in the morning instead of IN or I’d be stuck in traffic forever.

I found the coolest thing ever today! A cane that looks just like House’s cane (you know, House MD). I really want to get that.

Ok, I’m hungry, and I need more coffee. I hate falling asleep all day long.

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.

Another late night due to one of our sites being down. Three different circuits down, all at the same time. I’ve been on this conference call for hours now and I don’t expect it to be over anytime soon.

I was talking to one of my new guys I just hired and he’s sitting at home working and closing tickets. He said “years of night shift and VPN are like crack” and it’s true. The 1am conference call I had the time before last (last night) I closed about 50 tickets just waiting to join the conference call. We don’t really have “shifts” per say at work. We have our normal work day and if issues carry on throughout the night, then we sleep in and come to work late (like today). After 4 years and a handful of months, I’ve just gotten used to it.

Feeling like poop today, and tired. I’m supposed to do a sleep study to make sure I don’t have sleep apnea. Joy. I hate sleeping away from home, especially with a bunch of wires connected to my head. Maybe I’ll look like a robot.

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!

I’m having a bit of a problem sleeping at night lately, and the fat overfed squirrels aren’t helping. Let me explain.

We have roughtly about 5 huge tall acorn tree’s around the house and some of the branches and limbs go right above the house about 150 feet straight up toward the sky. We have skylights in our living room to allow more light in since we live in a very wooded area. Acorns are small, usually less than an inch big but they are like hard little rocks. With fall upon us, the tree’s are raining leaves down pretty constantly round the clock. Along with the leaves, come the acorns. When these acorns make their 150 foot fall right on the skylights there is a bomb like echo that radiates through the whole house.

BOOOOOMMM

It’s so loud. When it’s 3am in the morning it’s enough to sit you straight up in bed with a panic. My husband and I are getting used to it, a little, but it’s making our sleep pattern very chopping in between each acorn that falls.

I was outside on the porch this afternoon putting Jonah out and I noticed a few squirrels on the top of the fence. Holy moly, they have gotten fat. Every morning there are at least 20-30 acorns sitting on our porch and since the squirrels are so full they aren’t cleaning up these extra acorns.

If you have any starving squirrels, please send them my way.

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’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 …

I got my labs back from my blood work today. I’m a mess, and my body hates me.

My thyroid went on vacation and forgot to come back, my hormones must be with my thyroid because my body hasn’t seen those in a while, the diabetes decided to move in, and all the infections I’ve had the last few years are hiding out in my veins still, and my immune system said fuck it. So my adrenal glands saw my immune system throw up its hands and decided to follow suit. So because they were sitting around doing nothing, they joined thyroid and hormones on vacation and, because the grass is greener on the other side, never came back.

In other words, I’m really really sick. And I’m going to be really really sick, for a long time before my grass is greener and my organs want to come home and start functioning again. That’s if I can find out the vacation hiding spot, because if I don’t I’m screwed.

Sigh.

I’m so frustrated with my job. Sometimes, especially when I feel like I’m putting 150% into my job, I’m getting -50% back. Because I’m one of two people that knows how certain things work around here technology wise, I work more and spent more time on getting the problems fixed because problems don’t go away, and our department doesn’t exactly grow in size. In fact, it seems to get smaller. I’m not the only one here that feels this way.

It’s frustrating. I was asked to research out a problem today that I had already exhausted my resources on. All fingers pointed to one individual to fix the problem. I was told not to dump this problem on this individual, so I went to seek help from other individuals. They all said “Ask IndividualIAmNotSupposedToAsk” … nice. Nothing like being a ping pong ball. I think more time/effort is spent on politics then the actual issue. This has been such a problem lately. I’m so not down with drama, or the politics, I just want to do my job and make technology work. I like technology, but it’s only nice when it works, ya know? That’s my job. I fix things. Being completely frustrated with that I set that problem aside.

Then I get a call. It was one of those arrogant men who thinks all woman are secretaries if they are in IT, because they just aren’t smart enough to “actually” be in IT. I just love those types, you know, they talk to you like they are leaving a message on an answering machine. Anyway, this guy was telling me about a server of his, and why it wasn’t working. It’s a Linux box, right? He was getting the error message “Boot device not found” .. he wanted to know what to change in the BIOS because he thought it was a hard drive problem. I wanted to make sure the hard drive was getting power and he says he was positive that that CDROM was. Caught off guard, I asked him to tell me what he tried. With a snooty tone he says he threw the Windows XP Boot CD in the drive and was able to install Windows.

:: head desk ::

When I was silent (more so in shock) he told me, he has Degree’s and he knows what he’s doing.

I’m so ready to go home.

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.

Am I sure glad it’s Friday. Altho I didn’t go to work 3 days this week I did work from home which granted me the privilege to get a hell of a lot done. It’s been a hard week when it comes to health. Ever since I moved away from where I was born and raised I’ve run into nothing but problems with the health care system, and I long to have my old doctor back. Going back to Colorado however, isn’t an option and I must seek and find what I’m looking for here. It’s just going to take time and energy, the two most non-abundant things in my life.

I haven’t gotten a chance to catch up with my RSS feeds yet. I can usually keep up daily with them but with the amount of school work I’ve been up against I haven’t even played WoW. I don’t usually during the quarter but when I have a little bit of time I at least log on. Not this quarter, however, and I fear it’s going to reflect the rest of my degree program. Onward and upward, someday I’ll be happy I did it. Right?

I truly do love education and I love learning. In fact I would probably go to school the rest of my life if I didn’t have any other responsibilities or family to provide for. Things being how they are, I’m looking forward to that time I can actually have to sit down for a while after coming home from work. It only makes me stronger I suppose, and I’m learning those time management skills I always wanted to know. I didn’t exactly want to be forced into learning those however, lol.

I don’t have to work this weekend so I have the next 48 hours to do with as I please, in a very responsible manner. I was fully expecting to be working this weekend so it was a nice surprise. I have two movies from Netflix to watch … which I might do as I’m looking up information for my System Administration class.

Might as well get started.

Right now I’m arguing with myself on what to do. It’s already 1 AM but I feel like I need to get more homework done. Do I jump into some java code, or do I jump into a 5-10 page paper about system administration? Or do I simply go to bed and feel defeated?

With all the mess from the medical stuff I’m far behind and I want to catch up. I’m finding my time becomes less and less lately and it’s stressing me out in such a bad way that my health is failing. There really isn’t much I can do about it at this point in time, so I have to carry on and try my best.

Both projects that are due are pretty huge. I have to be semi-coherent for both which I am right now, I just don’t know which to choose. Sleep is something I haven’t been getting enough of obviously, but I don’t want to feel like I’ve not gotten anything done. I’ve been on call this week for work and tonight has been a busy work night for me too, which again pushed school off to the side. Sigh. I think I’ll start my paper …

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.

Well, it was sort of made of win. Pepper went to the vets to get his cast off today. After taking xrays his vet decided that his little bone isn’t quite healed good enough and they put another cast back on him for the next 2 or 4 weeks. Poor little guy, I’m sure he’s forgotten he even has 4 legs.

Other than that, it was a great day at work. I’m getting a lot done, and I have some huge projects on my plate for the week which feels great. I also got a raise, and I happen to be one of the two in my department that aren’t … :: cough :: … leaving the company not by their choice soon (if you know what I mean).

So what does that mean? That means I get more money, and they think I’m a smart valuable cookie. That makes me feel good

Got Brendan a new phone today too since he put his through the wash. It’s an LG Shine (black). It’s amazing how phones really haven’t come super far, of course when they aren’t iPhones.

Finals going on today and tomorrow. I haven’t been playing WoW because of this, and because I have to pull off at least a B in these classes. I miss WoW