I’ve been going through a tremendous tough time as of late, and for lack of a better term..I’ve never been so down in the dumps. Everything is a problem, everything is broken, I don’t feel good, my heart is broken, this divorce is hard, etc etc etc and just typing it makes me want to cringe and walk away the first exit I see because I don’t even want to hear all that whining myself.
What I realized today, it’s not getting me anywhere. It’s only making me worse and worse, and in turn it’s making my fibro as bad as it’s ever been. I can blame the -20 to -50 degree weather as of late, but I would be lying if I didn’t say it was my very own attitude thats keeping me in a pit of darkness.
Until this morning. This morning I had a small victory. I haven’t been able to keep down multi-vitamins for years. They come right back up within 30 minutes of taking them. I’ve tried every kind, from regular for men and woman, to woman only and I finally gave up.
Then my Aunt Donna suggested I try the children’s Flintstones Gummy Bear multi-vitamins with immune support and without iron. She told me to take two in the morning with breakfast.
:: drum roll ::
It’s been two hours and I haven’t had any problems at all. I also want to eat the whole bottle. It’s like eating candy for breakfast. Speaking of breakfast, I thought it would make my Mom’s day if I made breakfast in bed for her. She said that was the first time anyone has ever done that. I’m happy she was happy.
So what I have learned in only the first few hours today, a different way of thinking has already brightened my day and make me inspired and motivated. I need to remember to look at the bright side, instead of the doom and gloom. To find that middle balance.
My best friend Camille sent me a link today that I can stamp as fact with my Jenny stamp for being true.
It was about the lack of mens commitment when their wife gets a serious illness. You can find it here.
When I got diagnosed with Fibro a lot of things changed in my marriage, and not for the good. It was around that time Brendan started to distance himself from me. I noticed he would spend more time in the basement, and less quality time with me. On my bad days he would take out his frustrations of my illness on me because he said he didn’t have anyone else to talk to. I noticed that I was walking on egg shells around him more, and his drinking gradually became more frequent.
It got to the point where we were not spending any time together, those egg shells I was walking on became glass, and the drinking had become a nightly occurance.
Toward the end of our marriage, I asked him if we could spend one night a month together. He said it was a lot to ask for and he didn’t know if he could commit to it because of work (he works part-time at Publix)
I guess a person just knows when it’s over and it was that moment I knew I had to get out of that toxic environment, and that my marriage was over.
Brendan and I signed the divorce papers on the 6th and turned them into the court. I have to come back January 7th to go to court to finalize the divorce. In Colorado you don’t have to go back to court. Sigh.
This has taken more than a toll on me. There were things said tonight that touched the very core of my heart. Not in a good way. It questions my very soul to the post important people in my life. The most important person in my life. I’m not sure what to do, or how to fix it. I thought things were completely opposite than the way they were presented. This goes back decades, even longer. I question who I really am as a person who has too big of a heart and so much love to share and I thought everything was understood and ok, but they aren’t. My very soul is questioned. Love is questioned.
I’ve been doing the right thing ever since 2003 and being the responsible adult doing the right thing, making the right decisions, and loving my friends and family for everything, but .. do they feel it like they deserve? It makes me feel that I’m damaged, that I have been, that it’s permanent. These things I will never forget tho they have been forgiven.
When games over ride a friend in need, where does one go. I don’t know anymore. When there is noting left to say, it’s simple. There is nothing left to say.
I never wanted this divorce. I did everything I could so it wouldn’t come to that, but it has. It’s not only hurting me, it’s hurting my Mom too and I feel that’s somehow my fault. I hate it. I hate all this.
Solution of being a hermit is starting to sound pretty good. I can’t hurt anyone that way. After tonight, I’m at my own breaking point, if it hasn’t happened already. Words are daggers, and they went straight into my soul, and hearts can be repaired. But the soul is a different thing altogether. Souls can just die. If my soul would be a person, it should be in ICU, but there is no such thing. It screams, burden. That’s stamped on my forehead for all to see. It’s what my soul screams and I’m so ashamed. There is no way of coming back from that.
Well, things might actually be looking up. Turns out I have a nice healthy heart with no problems. Couldn’t ask for a better report. I tried to get a picture of the ulta-sound but the lady didn’t have a printer. Bummber. I’m trying to get as many pictures of my insides as possible. So far I have my bronchial scope and the MRI of my lower back (it sort of looks like a staircase) .. that’s what I get for not taking care of it sooner.
I’m 80 pounds lighter since the first of the year. No, I’m not dieting, I didn’t have any radical surgeries (at least ones I wasn’t completely conscious for), I do for the most part eat really healthy but I’ll have the occasional junk food every once in a while. I’m losing it from being sick and losing my appetite. It’s amazing how much faster you move minus 80 pounds tugging along with you. I hope it keeps up actually. Everyone wants to lose weight without doing anything, but … I know they don’t want to suffer through the sickness the whole time.
I am, get this …. I am getting better. I’m taking half the pain meds I used to take. I haven’t taken Oxycodone for 2 weeks and I eliminated my morphine capsule at night. I’m scared because for long periods of time on narcotic pain meds, the pain subconsciously feels worse than what it is. That scares me. Not sure I can handle much more, but it has gone down a bit. i don’t walk through days with an 8 on the pain scale. Right now it’s about a 5.5. That’s progress! I’m also feeling good that every single thing I get out of my closet falls off me. It’s been a long time since that happened. I have to wear a belt with every pair of jeans I have. I can move better, my shortness of breath has nearly gone away.
Nothing with my disease(s)/syndromes are easy fixes. All of them are permanent, but the difference is, I got me some good doctors finally who actually care how I feel. My Pulmonologist took it upon himself to get me into a drug trial for severe asthmatics to try this preventive drug which is most importantly, steroid free. It’s not like I have an appointment wit him … this was an after thought on his point to make sure I’m getting the best treatment available. Finally, I found the right people.
In other news, my Mother is flying down on Saturday to spend the week with us. Since I have Monday off I want to drive to Savannah Georgia. Since I’m getting better I think I’ll be able to handle the car ride fairly well, just as long as Mom and I don’t start one of our fights (like last time). They never last long, I just hate them to begin with. I’ve missed her so much, and I want her to see Spring in Kennesaw. Can’t wait!
As for work, I had a bad few days obviously if you read my twitter. Confidence is back and I’m right there in the middle of he game again getting done what needs to be done. Today I’ve had to give my team a tiny push as the deadline I set for them is coming up and I’m still seeing a lot of tickets in their queue still which is only 50% of the way I’m expecting them to go. We had a 45 second quick meeting reminding them of the impending clock that keeps ticking by not leaving them much time to reach their goal. I have faith, however.
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?
For once in a long time I had a week full of good, and the week isn’t even over yet. Hopefully the momentum will continue and I didn’t just jinx myself in the process of writing this blog entry.
Things started off on a good foot on Monday when I was ready for my Doctors appointment hours early. It always feels better to be ready for upcoming plans than to remember at the last minute and be rushed forgetting your head along the way. I met my new doctor with heightened anxiety as I’ve had such bad luck in the last year heath wise and doctor wise. I didn’t let myself hold high expectations for this guy like I had for the other worthless pill pushing, money stealing, non-helpful SOBs I’ve encountered within this last year. The only problems I can remember is having a little bit of difficulty in finding the actual office when it was in a medical park where the buildings all look alike only with different names on the front doors. When I finally found the right office I had my new patient paper work in hand and ready to turn in. When I finally met the doctor I didn’t let my guard down. I brought him up to speed of all the falls I’ve taken over the last year, everything I had been diagnosed with and how my health and body on our this downward spiral with no one to help me. I explained to him the mis-haps of the other doctors and I was finally validated when he told me that the Fibro and Fatigue Center was raping me for all the money I had, putting me on pills and medications that were completely un-needed and ordering tests that weren’t even in the same planet as to the actual illness at hand. It upset me to being duped, but at the same time I felt better knowing I had made the right choice in leaving.
I had with me all my blood tests and all other tests that I had gotten copies of. For any doctor I’m sure it had to be overwhelming and he wasn’t hiding that fact but he was also extremely concerned. Maybe it was my emotional self or maybe it was because he saw something between the lines, like some sort of pattern that alarmed him, but whatever the case he wanted to go over the stack of papers I gave him and didn’t want to wait to see me again so we could sit down and figure out what was going on. He scheduled me in for next week so he could get my medical records from the other doctors. Before we left he said he would always be upfront in the process of making me well and he would always make sure I was fully aware of any tests or medication or treatment I would be going through. He said he was honest when it came to that and he would never go through until he knew I fully understood. Just from his blunted honesty at the beginning of the appointment I knew he was telling the truth. He didn’t seem like he had any reason to lie, but he said he would get to the bottom of it, and reassured me of that. So now I have a new doctor, who feels he couldn’t wait to see me and wants me to come back in a weeks time. That’s pretty impressive. I was impressed.
Today I saw my lung doctor too. After my 6 minute walk around the office it was determined that I do not have to be on oxygen anymore and I’m allowed to go back to work, in the actual office instead of here at home. Instead of calling my boss I’m going to make a surprise appearance tomorrow. One of my tech’s called me tonight just to see how I was doing. I have a good team of guys that work hard, it makes it easier to be their boss.
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?
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).
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.
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.
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.
My narcolepsy is getting worse. At work if I’m in the middle of working on a document I just wake up with my finger hitting on some key filling up the page. Often times I have to us only one eye to take away the double vision. The new med they want to try on me can’t be given through the pharmacist or the hospitals, it can only be gotten from the manufacturer itself. (www.xyremcom)
I finally called the FFC center to see what was going on with that. I found out that they hadn’t even faxed over the paper over. This is the second time in as many months they have failed to fax in my meds. It’s rather surprising, because this place has a good reputation. When I told Dr. C about what happened last month he was just so visibility upset about it I thought he was going to spring a leak. I wonder what he’s going say this time and how upset he might be. The strange thing is that the staff at the FFC has been excellent so far, much better than I’ve ever experienced…so where are these problems coming from?
It’s not like I want to get anyone fired. The nurses I do have are great and kind with excellent bedside manner.
But this is my life we’re talking about. I’m falling asleep playing Rock Band with my husband, I’m falling asleep at work. Which is not good when my boss or the bigger bosses walk by. My confusion level during these times make me feel like a doorknob. I randomly fall asleep when I’m concentrating on something pretty hard.
I will call tomorrow anyway to see if that paperwork has been faxed and I’m going to request that my doctor call me when he has a minute.
As for the other Fibromyalgia symptoms, I have to have another sleep study done due to my slight sleep apnea so I get to wear one of those scary masks at night. Oh boy, eh? I wonder if the face thing will amplify my snoring. I feel bad for my hubby. He went to pick up my meds that were due for a refill. I couldn’t do any of this without him.
I’m just so frustrated. I’m using the cane all the time now and I’ve been enquiring about getting a power chair (I first called the Scooter Store place that you see those commercials for but my new insurance doesn’t cover it. What’s next in the whole meds scene? More to add to the arsenal or less to make me less sane.
And where do I go for all these questions? All the support groups I have found are so pessimistic, where are the people with Fibromyalgia and Chronic Fatigue living happy normal lives? Where are their voices? I’ve heard they exist, but where?
If I hear one more person tell me it’s going to be ok. I’m going to eat them for dinner.
I gave all my employee’s a day off tomorrow to sober up. I’m the only one out of the bunch that can’t drink due to medication so I thought, hey? Why don’t I take the day tomorrow and let them off the hook since they have done such a great job over the holiday break. I know, such a nice boss, you should work for me. How are your computer skillz? If they are up to par I’m interested in expanding my team. Just email me at yolospat @ gmail dot com.
Anyway, in an effort to replace what was once taken from me and sold for a vice without my permission, today was one of those days. My husband got me a new acoustic guitar.She’s a Dean and she’s HAWT!!!
Not only is she beautiful, but she sounds so much better than my old alverez. Now I need to start Guitar Lessons somewhere. I’ve always wanted to play and I’m so excited to start.
Due to my doctors appointment yesterday some things are worse. My blood is 3 times thicker as before which is causing me more pain. I’ve been put on Heparin twice a day and due to the contract I signed I have to wear a medical necklace stating anti-coagalant.
At least it’s out of the way but I’m sure getting sick of all the pills and shots. I have so much more but I have to go to bed, because I promised my husband that I would go to bed at the same time every night and it’s already past my time. Anyway, more tomorrow.
I’m on a million and 4 meds it seems like and for the last few months my legs have been giving out on me to the point where I have fallen. Now for the last few days I keep falling asleep at random times. Worst was today while on a conference call while holding my coffee cup. I woke myself up snoring while watching the coffee spill all over me. Ugh. Embarrassing. I got PLENTY of sleep last night so I don’t know what is going on.Twice on the couch last night brendan caught me sleeping with my head down yet my fingers will still on the keyboard.
This is insane. I can’t just randomly fall asleep. Altho I’ve had a little energy the past few days and I have felt better the last two days, I have this annoying system.
They better figure this out quick. My labs from 3 weeks ago came back and Dr. C personally called me. Everything is worse. The meds aren’t helping, and some of the lab readings were downright scary. I’m supposed to be on bed type rest for the next week and a half till my appointment (there I go, I just feel asleep again, ugh). Thing is, my doctor never calls me personally. Usually he has the nurses call me to relay messages, but this time he had only had my labs for 15 minutes before he looked at them, called tranquilizers in and some other shit (first day of tranquilizers I didn’t like them so I stopped taking them, that isn’t explaining the random sleepiness)
I just have a gut feeling he’s going to drop some sort of ball on me. He can say anything he wants as long as he doesn’t say the word “terminal” .. fuck that shit.
Oh ya, I got Brendan a PS3 with 2 guitars, drums, a remote, 2 controllers, fallout3, bioshock, Oblivian: Elder Scrolls, and guitar hero. Ya, my husband is spoiled.
He just better be getting something for me this year.
I’ve been so sleepy today. Not the “I’m going to sleep good night sleepy” but the “if you leave me alone for 5 minutes i will be sawing logs in no less than 5 minutes. I hope the xyrem.com stuff works.
I’m already on Provigal and it doesn’t seem to be doing much for me at all lately. Just tonight I kept falling asleep writing out this blog entry and it’s taken me all day long. I hate it. My doc wants to put m on xyrem. We’ll see. Dr. C made a surprise call to me on Friday himself. Usually if he needs to tell patients something he asks the nurses to do the phone call.
He called me 15 minutes after he received my labs. Sigh.
Mostly my triglycerides are over 500 which is stroke level. Oh great, ya know? JUST what I was needing to hear, especially since that way was one of my good days with minimal pain. When I would ask questions he said he’d talk to me about the rest of my labs on my appointment which is on the 29th. I finally made him give in enough to tell me that my labs were 3-5 times worse than when I had them 3 months ago which means non of my meds are working. Hurray! I just have something in the back of my head that it wasn’t the only bad news he wanted to give me and that’s why he keep reassuring me that I would be there on the 29th. I’ve never missed a doctor appointment, or an IV treatment appointment, or any appointment when it comes to the Fibro & Fatigue Center
Freaked me out. I’m supposed to be on bed rest and in his words he said “don’t move unless you have no choice. Um, ya, I have ADD. I don’t know how to stop from moving especially since I’m not on my ADD pills anymore. What if he has something really bad to tell me. Then I over heard him telling my nurse (Brenda) to call in tranquilizers so help me stay calm, so it’s not like the nurses weren’t there and yup, MORE pain meds that aren’t mixed with tylenol or Ibuprofen
Then he told me any dizziness I had, whether it was sitting up or If I started to feel numb at all to call 911 and to have my husband call him.
I just can’t get it out of my head that there is some thing really wrong and he’s waiting to meet me in person when he tells me. He’s NEVER called me about my labs before, what makes this time so different and why is he calling personally, when I have an appointment in a week and a half until my next appointment. I don’t know. Now THAT has got me worried.
So, doctors orders. Don’t move. I can get a lot of WoW in .. that is if I don’t keep falling asleep everywhere I go.
Sigh. I wish this were all over Most of my friends at work don’t know about this blog, but if they will know my secret usually only reserved for those closet to me.
My eyes are closing. I think I’ll sleep right where I”m sitting.
Friends are great. Just got off the phone with my friend Chriss, catching up on stuff and stuff. Also had a nice long talk to one of my co-workers today who has cancer. Her treatment day is on Thursdays, and mine are on Wednesdays. Anyway, it’s nice to talk to someone with a chronic illness, not that I’m glad she has it, but glad we can relate to each other. She’s so sweet.
Brendan and I went out on a date last night to the used bookstore in Marietta called The Book Nook. It’s our FAVORITE used bookstore out of the 4 that we have been to so far. We’re trying to fill in the holes in our collection, working on Dean Koontz, John Saul, and Stephen King. The owner is always glad when we come because we’re always the biggest sale of the way with an extra 10% off
Tomorrow I’m having a sleep study done. I have to be at Wellstar Windy Hill Hospital at 8:30pm tomorrow night. The rooms are like motel rooms. I can wear my own PJ’s and bring my favorite blanket, aka woobie, since it’s more of of something to hold than to use as a blanket. They have wireless internet so I can surf the web and stuff, or watch TV. Bedtime is between 11:00pm – 11:30pm. They will hook me up to a bunch of wires before I go to sleep so they can monitor everything. They are even feeding me breakfast in the morning. Brendan is going to drive down with me to get me checked in and such. I love my husband I’m a little scared because I always feel weird sleeping away from home, but if they find anything wrong we’ll have a plan to fix it.
The thing I’m going to miss the most is having the 2 cats and my dog sleeping next to me. I tend to fall right to sleep when they are, but I can’t ever stay asleep. Sigh. We’ll see.
I have a new favorite channel. It’s the “Bio” channel which stands for “The Biology Channel” … I love learning about people and their lives. I just realized I’m going to miss House MD tomorrow. Oh well, it’s going to be on the DVR when I get home the following night.
I’m so pooped tonight. I feel today at work because my legs have been giving out. Talk about embarrassing. Leave it to me to trip over nothing.
I’ve had two really bad Fibro days the last two days. Discouraging at the least. It seems I haven’t been awake much today and it’s already time to go to bed. Frustrating again. Sigh. Everything hurts, mostly my legs. It’s really sad when morphine doesn’t take care of the pain. I want to kick something but that would only but me further behind. Whatever.
This change in weather has been kicking my ass. This morning I was so sore and stiff. The pain lately has been a lot worse too, especially in my legs. My feet have been swelling up all weekend too so I’m trying to keep them propped up as much as possible. I have the just-got-run-over-by-a-mac-truck feeling today and lately.
I found a web site Friday night that streams the police scanner at Scan Cobb. When I was growing up my Father was a fireman and we always had a police scanner playing 24/7. I used to have a mobil scanner, but I don’t anymore so it was exciting that they actually stream this stuff. It makes me feel like my Grandma Reba who still has her scanner going all the time.
Tomorrow is my husband and I’s 2nd year anniversary. It’s amazing.
I 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!
