Identity Theft

As children, we dream about who we would be when we grow up. Doctor, Lawyer, Teacher, Super Hero, Princess. We go through life planning and preparing for our future, course correcting when needed but still keeping that childhood vision. Me, I wanted to be a dolphin trainer/teacher/doctor/lawyer/musician. By college, I honed in on exactly what it is I wanted to be and started the journey to realizing the grownup me.

What I didn't count on, what I didn't prepare for, was that at 33, I would find myself filling out paperwork for disability. This isn't me, this isn't the life I dreamed of. Someone Something has hijacked my life and taken over. This surely can't be my life, it can't be me. I have spent nearly two years going to doctors, trying therapies, taking more medicine than I have ever taken in my entire life until this point. All with the hopes that I would find a way to return back to work. I'll get better, I'll learn how to deal with it, put it behind me.

The problem with that is your brain may say go, go, go. Your body, on the other hand, will stop you cold in your tracks. My body did just that. It shut down and in a big way. I no longer had control over what was happening. In my head, I watched as I spun out of control, a slow burn that exploded on impact. It was unexpected, inevitable and horrifying. I barely recognize myself and I don't remember nearly an entire year of my life.

I've been told that fibromyalgia typically shows up this way. Mostly because after countless doctors appointments, tests, medicines and therapies you still feel no relief. So you begin to think it's all in your head, that it will go away. So I pushed myself to do better. I worked harder, more hours to overcome the sinking feeling of the world crumbling around you. I could have asked for help or said I was overwhelmed. I tried to not let it isolate me from the life that is happening around me. But over 5 years of no answers and more symptoms at some point you just. . . give up.

It was easier to not make plans. If you don't interact with people, you can't let them down by not being able to do something as simple as go to dinner. I allowed this thing to hold me hostage. I confided in virtual strangers because it was easier than letting someone close watch my downward spiral. Strangers can't hurt you the way the betrayal of a close friend can. It was minimizing the debris field of my life.

No,this is not me. Not who I planned to be. That's ok, because this doesn't have to stay me. Only I can determine who I really am and I refuse to let this be the deciding factor in my life.

Fuck You Fibro

It's funny, I've attempted to update this blog for several weeks now. It's not for lack of things happening in my life that has kept me from blogging. In fact, I've started and stopped several times to write something. The words are just stuck in my head. A result, no doubt, of fibrofog that seems to be coming around more often these days.

It's the same routine, change in meds, change in dosages. A slippery slope that we keep teetering on each visit. Too much of one medicine makes my nerves hyper aware, too little and I have no relief. I think this would be so much more manageable if I knew what makes the fibro flare up. It's not like I know that a+b = flareup. It's not so concrete.

Really though, I just want my life back. I'm normally extroverted but lately I haven't felt so social outside of my own house. It's just easier that way. Getting out sometimes is a chore and I can't always predict when I'll have a good day. They're few and far-between and that can lead to not being such a good friend.

Just started Aqua therapy. Being in the warm water is less stressful on my nerves and takes some of the strain off of my muscles. Who knows, this aqua therapy thing could really help. It at least offers some relief from pain. There's nothing like getting into 90+ degree water to ease these nerves of mine. The temporary relief is worth it though.

fibrohaiku

fall has arrived
cold and rain bring changes
the pain will not cease

The Terrible, Horrible, No-Good, Very Bad Sleep Study

So as much as I complained and said 'I'm not going', I went and had the sleep study done. It's over, I'm alive and relatively unscathed. However, I'm thinking I really should have just stayed home and rescheduled. Something didn't feel right when I met with the doc the first time and I'm usually right on when it comes to my gut reaction.

I guess the first incling that something wasn't right was how quick my meeting was with the neurologist and how disinterested he was in my response. Though I was relatively calmed down when he said that 'the good news is, you don't have narcolepsy. you're not falling asleep when you drive or at the movies. that's a good thing.' Woohoo, I got a good report. However, when he asked me questions, he just didn't seem too interested in my response. Like the fact that I flat out told him repeatedly that I only have trouble sleeping when I'm in pain and that the less I sleep the more pain I'm in, the more pain I'm in the less I sleep.

And he really didn't seem to be interested when I told him that I know there are several nights that I just stay awake reading because I know that I've got nothing going on the next day. So if I happen to sleep until oh, say, noon that it doesn't matter. I did let him know that there are days when my fibro is just all wonky and I'm awake and that on those days I'm tired during the daytime too. But it's part of the disease. He just didn't seem to like that everything had an explanation. And I get it, lets have the test just to rule things out.

I was never opposed to the sleep study. I had issue after the appointment when he said (and might I add AFTER looking at and verifying my insurance info again) 'yeah, we'll add this nap test too' and walked out the door. I was left with his tech staff to show me the facilities so I knew where I was going and what to expect on THE day. So the other thing that got my 'ally-senses' all a tingle was when I asked the tech, who couldn't speak or understand English all that much why I needed the nap test and what it was. All she could say was 'you just do.'

OK. . . maybe it was lost in translation. So I try my best to quiet that little inner voice that was getting louder by the day. I kept saying, it's one day, it's no big deal, you've got tv, internet and you'll be sleeping, how hard can that be? So I arrive to the brand new building on the night of my test with my overnight bag, my laptop and some water and snacks (they encouraged packing food). It was the first of several days that were in the triple digits so I was very glad that I was going to be in, as they promised, my own individual climate controlled room, I can't sleep if it's hot.

Had I known that their idea of individual climate control was a fan on a stand and that their AC unit wasn't working, I'd have waited until things got fixed or had gone to a different office for the test. If they want me to sleep, I can't do it when I'm uncomfortable. However, I told myself that this was like a band-aid. I just had to get it over with. Besides, it always gets cooler overnight, it can't be that bad. If only I was prepared for what to come. Rather than write it all out, I'll list what exactly went wrong once they started putting on those thingamabobs to read my brain.

1.) No internet. Tech, who like tech on first office visit and all office staff, is from Russia and speaks very little English. She tells me that she called the office manager about the problem and that the office manager will give it to me tomorrow. Whatever, I was getting ready to sleep, as long as I had it by the next day when I was confined to the box, I'd be ok.

2.) There's a train. It is a parking-lot depth from the building. A BRAND NEW building. It runs by every half-hour. It shakes the building and it's loud. WHO puts a sleep study office a 'peaceful and tranquil sleep environment' <--their words not mine, RIGHT BESIDE A TRAIN?!

3.) The building is underneath the flight path for the helivac for the Berks and Lehigh Valley so every medical evacuation that required helicopters flew RIGHT over the building.

4.) It was soo hot that the little dohickeys kept MELTING off of my head not only pushing back the time that it took to do each nap test but disrupted my sleep at night. It was also so hot that the machines that were hooked up to my dohickeys were overheating. It was so hot that I had to change rooms because the machinery in my first room overheated too much.

5.) The internet was not fixed. After 3 weeks of being in their brand new office their phones and internet still did not work. So if your AC, phones and internet don't work - why the hell are you in your new office? How can you run your business?

6.) Thankfully, I had internet on my iPhone. So I looked up what exactly a nap study was because they still wouldn't tell me what it was and why I needed it. They also wouldn't get a doctor to come in and explain it to me either, even though I saw not only MY doctor but the other doctor in the practice as he walked down the hallway. A nap test determines if a patient has narcolepsy. WAIT, say what?! Remember that discussion that I had with the neurologist when I was at the first office visit. He flat out told me that I don't have narcolepsy. So why then, am I getting tested for it? Wonder if that has anything to do with that verification of my insurance that he did before he walked out the door. . .

What really bothers me, is not the fact that it was near impossible to sleep, that it was way too hot and that they flat out lied about the peaceful environment with internet and climate controlled rooms. What bothers me is the fact that as a patient, I had questions, regardless of how stupid they thought they were. They could have answered them and if they couldn't, they should have found someone that could. That fact alone was what had me sitting in a box of a room near panic attack. I don't like being told 'just because.' Especially when it involves my health. I mean, just because my insurance covers amputations doesn't mean I'm going to go to the hospital and just have them start whacking away at my limbs 'just because'.

I felt taken advantage of. So needless to say, I am not going back to this particular office for the results of this test. And I sure as hell am not going back if I need to have another one done because of any malfunction of the equipment because of the heat. There are other specialists who work at the hospital and even in King of Prussia that I would gladly go to. I have no aversion to the test(s) itself. I should have taken the clues at the first visit when the doc was too busy and disinterested in what I was saying that I should have asked about other options.

It was a calamity of events, and seemingly only something that would happen to me. I tend to have the luck of a series of unfortunate events that follow me around. I either go big or don't go at all when it comes to these kinds of situations. Lesson learned, I've got to listen to what my 'ally-senses' are telling me and just go with that initial gut instinct. Hopefully there was something to learn from this experience. Maybe they found something that will help with the FM or nothing at all and this was just one more thing to rule out. Either way, there has to be some good from the bad.

To Sleep, Perchance to Dream. . .

Hamlet said that once, in his 'To Be or Not to Be' soliloquy. While he was talking about death, I'm talking about sleep. Honest to goodness sleep. And since I haven't been doing that so well lately, my fibro doc wants me to have a sleep test done. At first, I was all about the sleep study. Anything for answers. Plus, when I can and do sleep, I do it well.

That was until I met the neurologist. He's all for the sleep study too. He suspects that when I can't sleep sometimes my brain is actually asleep while I'm awake. It's typical of fibromyalgia. So he's gonna add an extra special test called a nap study. I thought maybe nap was an acronym for some wires they add to my noggin while I sleep. Nope, not so much. They actually want to study me while I nap. Again, at first I thought no big deal. Until they described it in detail.

Tomorrow night (did I mention it was tomorrow?) I show up around 9pm. They show me to my box (yeah, that's what I'm gonna call it from now on) where I can change into my pjs. Well, I'm gonna one-up them and show up in mine because I mean business. I'll get hooked up to all kinds of wires and dohickies and from there they confine me to my box for the night or from whenever they get done til 5am when they wake me up.

Here's where the super-extra fun stuff comes in. My box doesn't have a bathroom. There is a communal uni-sex bathroom that all of us guinea-pigs get to share. Oh yay, who doesn't love sharing a bathroom with strangers while hooked up to machines. Other than that, they want me to stay in the box which is climate and light controlled (for purposes of the test).

Then, every hour-and-a-half they'll make me take a nap. What the fuck?! Are we back in kindergarten? Do I get a snack too? So I get to lay in bed for 20 minutes and if I fall asleep they'll let me sleep for 30 minutes, otherwise I have to lay there for 20 minutes. Then they wake me up and repeat this all day until about 4pm. Let me outline my biggest issues with this whole nap thing:

1.) I do not do well when I'm expected to sleep. The more I feel I need to sleep or that someone wants me to sleep; the less I'm gonna sleep. It's not really out of defiance. . . it's just how I roll.

2.) When I fall asleep, and because it doesn't happen that often that I fall asleep, I don't want to be messed with. So please, if you value your health, don't wake me up!

3.) The only way I can go out into sunlight is if I were a smoker and needed to smoke. So, I think I'm gonna take up smoking tomorrow. Maybe they won't be able to tell if I buy those candy cigarettes. . .

4.) They're going to video tape me sleeping. What if I do something embarrassing like fart really loudly, or have weird movements when I sleep. . .or even if I talk in my sleep?! I don't want that recorded for posterity!

So yeah, I'm gonna be in a room all by myself. And yes, I'll have access to tv and I can take my laptop to do 'work.' Hopefully I can pirate some wireless and I'll bring books and all that stuff. Eddie says to think of it as a business trip where I'm expected to sleep. That's what I'll keep telling myself while I'm stuck in the box.

I think what it all comes down to is that I'll have absolutely no control over anything. Not when I wake up, when I fall back asleep and really when I leave the box. Because in order to go to the bathroom, I'm gonna have to be unhooked and I can't imagine them letting me do it myself. I also don't do well in confined locations either. And this box is small. It's going to be interesting, this study of mine. I hope that I can get right to sleep when I get there. I hope I can be a good nap taker too. And I hope that it goes by quickly. So expect updates of my confinement starting tomorrow night. 'NAP-Gate' starts tomorrow at 9pm.

It's My Party, I'll Cry if I Want To.

Unbeknownst to me, my body has decided to go on a sleep strike. Of all things. Sleep. Why not hunger. I could stand to lose the weight. But nooooo, sleep. Since a little before Memorial Day I've been trying to sleep. I got a couple days in, but I'm back to no sleep again. And yeah, I know, happy happy joy joy and all that bullshit.

Guess what, today I'm going to be a bitch and today I'm going to bitch about it because damnit, I want my sleep back. It's not even just being tired anymore. I now have the lovely buzzy electrical, thousand racing thoughts in my head, aching, twitching never getting comfortable no sleep pissing me off side effect of fibromyalgia. This buzzing sensation is so odd. It's like there are bees in me. And not in the cool Homer Simpson way either. I don't shoot them out when I talk so when I talk bees attack people. No, this is just buzzing around humming inside every cell. It's the creepiest feeling by far that I've encountered.

Forget about reading too. I either read a few pages and forget what I've read (which is VERY unlike me) or I can't get comfortable enough to read. I can't do anything with flower arranging because this buzzing humming has made my fingers near useless. As hard as I've tried arranging by mouth, people don't appreciate slobbered on arrangements. As much as you try, you can't sell them on the 'it's not slobber, it's dew' theory. So I've spent way too much time this week on the internet. I now play more games on Facebook than I care to that I know will involve way more time than I'd like to spend. Words and pictures just pass by my eyes online, the tv, books and magazines and they don't connect in my brain.

I know that when the weather gets better and it isn't storming or threatening to storm every day that I'll get some relief. But fuck, why can't it be now? I have thoughts in my head and I want to get them out but they stick there. I write and it doesn't sound right, not like me. I know, then don't write, but here's where I'm really stressing myself out. I haven't talked to my dad since last August. Among the bazillion other things that have happened since last summer until now; I made the choice to temporarily cut my dad out of my life.

We don't have the closest relationship to start with. But last summer, I really felt like my life was crashing down around me. And adding the stress of the holidays (stressful because I always have expectations of good holidays with him and the ever present dissapointment because I realize that my father is ultimately a stranger) I just had to cut something out and compartmentalize the things in my life that were crashing around me. So the Dad/Step-Family box has been in storage 5 miles away and out of my sight.

With father's day approaching and the looming fact that I at least owe my dad some kind of explanation of what is going on in my life, I know I have to get in contact with him somehow. The most passive way for me was to write him a letter. So what to say, 16 years of hurt and dissapointment have been buzzing around with the bees. These words are just floating around, fragmented and confused and I don't know how to put them together but I know that I have to.

I know that once I sleep I know that it will all come together. Will it magically make everything ok between my dad and I? I'm not getting my hopes up. It'll be done, I'll have said my peace and will know that was all I could do. If I could only read and relax and rid the buzzing humming tension and get a few days of good sleep, my mind will be so much better. I'll be able to focus on the good instead of the bad. So bear with me if it takes a post or two or three to get this shit out of my system.

No Sleep `Til. . .

No. . .seriously, no sleep `til when? I'd really like to know. I've spent more time awake this past week than I have asleep. I finally, after complete and utter exhaustion, get maybe a day or two of a regular sleep cycle and then it's a slow and gradual decrease of sleep each night. The less I sleep the more I hurt, the more I hurt the less I sleep.

I know it's the nature of the fm beast but can't a gal get a break? On the bright side (yeah, I remember that promise I made too) I've been reading a lot. Since I was practically born with a book in my hand, I really can't complain all that much. I'm never one to miss an opportunity to read and it pretty much doesn't matter what it is as long as it's in english (I'll even read a book to completion even if I don't like it.) So I guess if I've got to stay up til all hours of. . .well. . .any time, I've got a lot of reading to do.

That should make my husband happy though. I've got two nearly 2ft and 1 1ft stack of books I've accumulated that I've got to read. Did I mention that I like to read, you might not have picked up on that yet. Not to mention the books that I've had loaned to me (sorry mom!)that I haven't touched yet. So I mean really, this whole no sleep thing is a win-win situation right? More time awake is more time to read, more time to read makes a happy Ally and a happy Ally is a less owie-Ally. Now if only I can add more hours to the day. . .

The Daily Ow

If you ask me on just about any given day how I'm doing, 99% of the time I'll tell you about the pain I'm in. I was recently diagnosed with fibromyalgia a nerve disorder that causes, among other things, widespread pain. Though the diagnosis was recent, more than likely I've had this for quite some time. There's no one certain trigger point that makes it go from annoying to full-blown; but some specialists have thought stress, illness and trauma are triggers. In some people, it could just be age. Fibro isn't the same with each person.

I'm tired. All the time. I'm in pain. All the time. What I don't like is that I've let that become who I am. Why do I have to tell the first person who asks me how I'm doing about my pain? I've let this become me. I welcomed this in and made it part of the family. I'm going to be in pain. That's part of my life now, that's a given. I'm really trying hard to get beyond that and say 'you know what, I was able to get some cleaning today' or 'I wasn't as tired today' and be happy about that. Sometimes it's hard to look beyond the pain and the negative towards the good things in life. I certainly have enough of those to be regular Ally and not FibroAlly. So. . .in the words of one Monty Python, I'm really going try to 'Always Look on the Bright Side of Life.' Very sage advice, don't you think?