A is for....

Abandoned
Alone
Agonized
Ashamed

....I know there's more, I just can't really think right now.

weather report

Forecast over next several days, chance of flurries.  Kind of like me.

this is probably sad but....

there is something to this whole publicly yet anonymously whining on the internet that makes me feel better.  Well that and getting my hair cut.

lost aka wallowing in self loathing/pity and fear (sorry)

I haven't been writing. In fact I haven't been doing much of anything.  I slept through Thanksgiving and all accompanying festivities. I missed my family and friends.  And yes, I'm freaking out right now and feeling sorry for myself and thats why I don't want to write.  Because when  I started this I really didn't want it to be just about my stupid body and whatever the hell is wrong with me.  But I realized recently that that is all I can think about anymore. Even when I'm trying not to.
I'm afraid.  I'm afraid to go out because I might fall or get sick . I keep remembering the day I fell in the mall w. Z.  I don't want to embarrass her or make her feel bad because her mom is sick.   I never know how I'm going to do each day.    That's the thing, I just never know what my body will decide to do or feel or when to do it.
I keep thinking that I'm going to get better. That this is just all in my head and as long as I take care of that my body will be fine because I'm not really sick, right?  I know they say I am, that there are significant physical disabilities I have that can explain all this.  But I don't believe them. I think I'm crazy.
 I know I just need to be patient, my appt. is next week and I still believe if anyone can help me they can.  But my life is so fucking confusing to me right now.  And I'm sad and scared and always cold. I can't face anyone I work with.  I feel like I let everyone down.
Everything falls apart, the center does not hold.
I'm going to go out today, I have to in order to get some things I need.  And I'm going to tell myself that I'm not going to fall or have trouble driving and miss my turn or be unable to park.  I'm going to hide my brace so I don't look sick, I'll put on makeup and do my hair.  And most of all, I'm not going to cry. At least not until I get back home.

all before 2:00 pm

Today is surprising. I actually have some control over my body and while still pretty shaky, am not so weak.  So far I've done a load of laundry (even put it away!), put away the dishes, cleaned the tub, and left the house on my own.  Pretty amazing, huh? 

snapshot

soundtrack

5:30 am - NPR. I have no idea what they're blabbing about but I want them to shut up.
Mid morning, around 10:30 - Dixie Chicks. Put on before shower and just kept them playing.  They are excellent for a toothache.
12:10 pm - OMW to the dentist.  It's the first time I've seen one in over 10 years.  I've been meditating, deep breathing, visualizing, taking ibuprofin. I notice my driving seems more defensive than usual but am fighting the fibro-fog. I'm actually listening to the radio at a volume higher than a baby's music box.  MIX101? Fresh105? I have no idea but it's okay, not bothering me.  I recognize most of the songs but have no idea what they were.  I arrive early and take a xanax in the parking garage and do some more breathing, keeping the radio on.
12: 35 pm - Anxiety building against the background noise of that blast from the past, dental office staple of "Brandy".  I'm pretty sure that played at my last dentist appt - and the one 10 years before that, and 10 years before that....I text my sister: "...Oh the pain."
1:something or other - Am in the dreaded chair sucking in nitro as if my life depended on it.  No music here, just the television which the uber business-like nurse had tuned to wife swap. Enough said. I asked them to turn it off.
2:00 pm? - Am OMW to the pharmacy, need an antibiotic.  The radio is on again but I don't notice it, I just want to get home.  I can't talk and am kind of freaked out that I actually did this.  I mean, it's the dentist......
Sometime after 3:00 pm to present - I remember getting in the door, peeling off my clothes and brace, and pulling on my soft stuff.  I grab some water, a swig of kiefer, I'd done drive-thru and gotten a chocolate shake.  I boot up my computer and send an email to MDM to please cx panda's appt.  I turn on my ipod, a huge playlist of a lot of my favorite older and indie songs that I created by accident.   Right now am listening to The Smiths, "How Soon Is Now", earlier it was a lot of Moody Blues. I'm so thankful to be home, and I'm Super-Thankful that my brandy is in the cabinet and not on my ipod.

Weekend summary

I had some really good moments this weekend, that was very cool. It was so nice to see Miyo, and what parts of the movie I saw were fun.  Going out to dinner Friday was a hit - I think I figured it out. If I feel good, I need to just go ahead and make a plan and execute it.  I didn't tell M or Z what I wanted to do, they just both got home, I told them, we did it and am pretty sure we all had a good time.  Bonus ; ).
But now it's Sunday night and I'm tired. My limbs don't want to move, my shoulder and neck ache. But my last mission of the evening is to get rid of this god-awful toothache I've had all day. I've taken tons of ibuprofen, finished my vicodin, used three different topical preparations and have resorted to my father's old cure of brandy. I'm mixing mine w/ pomegranate juice and a splash of ginger ale in addition to the cotton ball treatment.

Am going to have to break down and go to dentist tomorrow if no improvement, I sense pain driven insanity on the horizon.

law and order and medical marijuana

I am without a doubt one of the biggest Law and Order geeks out there. I've watched it ever since the first season, sometimes drifting away but always coming back. It has been my longest running, sustainable relationship with an entire group of people.
This year, Lt.VanBuren has ovarian cancer caused by previously undetected HPV.  She's going through chemo and having a hard time.
On Friday's episode, her son brings her a joint he got from a nurse in an oncology ward at the hospital near his college. She gets defensive, saying this was not how she raised him.  Her son is pragmatic about her illness and says it's up to her. He leaves the room.  Her bf comes over and she accuses him of  being in cahoots with her son, she is "an officer of the court, sworn to hold up the law". He shrugs and tells her she's a sick woman who can't keep her food down. He is also very pragmatic about it. No drama, just the facts.   
In her next scene, she is at the station and pulled aside by the "Chief of D's".  He tells her someone reported smelling marijuana on her clothes.  Pulling her into a corridor, he asks her if she's crazy, holding onto her arm with one hand and reaching into his pocket with the other. He takes out a box of mints and gives it to her, telling her they can hide anything on her breath..  He then tells her to change her clothes after she smokes. Her confused amazement at his actions doesn't keep her from agreeing with him. "Chief?" she asks.  "Oral cancer three years ago" he replies. "That stuff was the only thing that got me through".  The show than returned to the main plot and did not mention med. mj, or cancer for the rest of the episode.
Have I mentioned how much I love Law and Order?
The link below is from my dear friend vj who continually tries to get me to move to Portland for my health. One of the many reasons I love her.

 http://www.reuters.com/article/domesticNews/idUSTRE5AD06O20091114?rpc=60

more history from the fm board, written nov. 5, 2009

guilt and shame 

---

Hello. I am new to this community and was hoping someone who has lived w. FM for a while would share some of their experiences and feelings about having an invisible illness.
I've been on the diagnostic merry-go-round for several years but the past year has been non-stop. Reading different articles about fm, I realize how fortunate I am to have gotten many of the exclusion tests out of the way in only a year. I went from my doctors thinking I had MS or some other demyelinating disorder, to being told my pain, muscle spasms, fatigue, weakness etc are a result of previously sustained trauma to my muscular-skeletal system and depression, to this new tentative diagnosis of FM. I am again very fortunate that I live in a city which houses the leading rehabilitation hospital in the country and have been referred to them for fibro evaluation which hopefully I will be able to have soon.
Here's the thing. I have been trying to research FM from all sides - those in the medical community who support the diagnosis and hypothesis that it is a neurological disorder, those who believe it is psychosocial, those who have been diagnosed and are managing the condition, and those who are simply trying to figure out whether their acquaintances, co-workers, family members etc are really physically ill or are they just people who can't handle reality. I'm not sure what I think. I know I perceive my pain as real, the cold fire which seems to have replaced the blood in my veins and runs through me making me feel as if I'm being flayed from the inside out. The frequent migraines, the hot and cold flashes, the trouble sleeping, the relentless dull awl that bores into my back in a spot under my shoulder. The weakness in my legs and the crippling fatigue. These are all real - to me. Other symptoms can be seen, the muscle spasms, gait issues and red eyes. The 30 lbs I've lost without trying. These are noticeable by people other than me. I've read story after story, people I don't know describing what I feel. Shouldn't that be enough to convince me? But I also know that as the anti-fibro medical camp points out, I do have a history of depression and emotional problems.....I've had panic attacks over the last 6 years, so I guess you could say I have a history of generalized anxiety as well.
I feel so conflicted, guilty and ashamed. What if through my mental weaknesses, I've made myself sick? I thought I had for the most part dealt with my child-hood emotional traumas. I've gone to counseling several times over the past 20 years, accepted that I need medication for my depression and seek out help when I realize I'm going over the edge. Over the past 10 years I have started trying to take responsibility for my physical health as well by getting regular yearly check-ups, eating right, trying to fit in exercise. I attended physical therapy after the car accidents which damaged my back and made the changes suggested. But what if after all is said and done, I'm just really a bad, weak, lazy person who doesn't want to have to work or face up to my responsibilities as a parent, daughter, sister, friend etc. What if I'm so far gone, that I've now made myself sick instead of facing reality?
Please, please, please, don't take this as an attack on anyone here or in the greater fm community. I don't know what the truth is and it's probably different for everyone, so that's what I'm trying to find out. I just know I have to do something, I can't live this way. If it is my fault, if I'm doing this to my body subconsciously, than I will go to whatever counseling, exercise programs etc suggested in order to face up to it. If it does have it's roots in neurology, than again, I will do whatever it takes to manage this.
Again, I truly hope I haven't offended anyone. I just need to figure this out so I can do something about it.
Thank you for listening.

journey to the center of ....my body? my mind? my soul? I think it's all three....

WARNING - SUPERLONG AND PROBABLY VERY BORING

 This post is some background on my physical condition and what my body and I have experienced over the past year.  Feel free to skip this stuff or anything else on this blog ftm,  I prefer the idea of people reading it in theory.  It's rambling, in rough stages and I will probably continue to edit. It will be a work in progress.  I have the ulterior motive of  finding a way to put a comprehensive history together for my upcoming appt. at RIC for a FMS/Spinal deterioration and chronic pain evaluation.  I've haven't been able to do that yet and I know it's important.

I want to focus on the past year because that's when I first learned words like "Demyelination", Stenosis,  Ankylosing Spondolitis and a whole bunch of other words that get tagged by spellcheck. 

I researched others I had heard but never bothered to really learn what they meant. After all they were those words you see on other peoples blogs and msg.brd postings. They are headlines, sound bites, and homemade fliers wrapped around extra large mayonnaise jars placed next to cash registers. They belong to the world I live in not to me, they belong to *Other People* . Words like "Multiple Sclerosis", "Rheumatoid Arthritis", "Lyme Disease", "Central Nervous System Disorder", "Muscular Dystrophy", "Fibromyalgia". Some other words I'm too embarrassed to post.

And then there's the really bad words. Words like "No Cure" and "Disabled", and "Fatigue". And of course, "Severe, Chronic Pain".  Severe. Chronic. Pain.  I never really believed in those words. I do now. It doesn't stop, it doesn't go away. Sometimes it gets a little better. It changes and moves and I never know from moment to moment what my body's going to do next.

Below is something I posted on a fibro board.  It's an overly verbose ramble trying to describe my pain and it was finally made me do the blog.  At least this way no one has to read it.

Hi Wanda and Jess,
Well, to try and answer your original question, "How did I first feel before someone mentioned FM to me?" I'll have to leave a pretty long post, so my apologies to all in advance and consider yourselves warned
My understanding is that it's different for everyone but I can tell you for me it started with an unbearable pain in my hip. I wasn't doing anything, just sitting on the train on my way home. The pain was so bad I could barely walk for 3 days. I actually literally draped myself in thermacare patches and did my best not to limp in public. Than it seemed to move to my leg and butt. One night my daughter and I watched the muscles in my thigh jump of their own volition (am i weird for saying that was kind of cool?).
Anyway the pain moved to my back but I was used to due to back injuries I sustained over several car accidents - I am a magnet for IDLV, Idiots Driving Lage Vehicles, lol. But my legs continued to spasm and get progressively weaker, especially my left. I started losing my balance, having dizzy spells. My neck and shoulders were killing me and I would have random shooting pains everywhere. My head, arms, hands and legs tingled and migraines became a daily occurrence. I would have periodic numb spots on my thighs, arms and face. I grew weaker and weaker and more exhausted. I could barely walk.
I finally gave in and went on STD. I was under the care of a neuro, an MRI had shown signs of demyelination in my brain. I underwent a battery of tests all which came back negative except for exacerbation of my previous spine injuries and some chronic muscle damage, probably from when I was a gymnast. They tried PT, (e-stim and ultrasound) but it did nothing for me. Neither did Neurontin, or increasing my effexor, or putting me on clonazapam. When I wasn't at the doctor, I was sleeping. After about 2 months of tests they decided what was wrong with me was all the drugs they had put me on, including my blood pressure meds. So I stopped everything but the effexor and went back to work, part time for a few weeks and than back to full. I felt fantastic for two full weeks, the memory is on my current top ten desert island must haves. Then slowly but surely I stated to wear down again. I feel like a  worn out toy who is left turned on all the time. My limp returned. I started to have muscle spasms all over, not just my legs. Things started to really hurt again. Added bonus, my skin often started feeling as if I had been sunburnt....or flayed from the inside. There were/are times my bf will just gently caress me and I have to beg him to stop because it feels like his fingers are stroking me with trails of fire.  More than anyone, he's witnessed what's happened to me. How much I've changed.
At this point my neuro referred me to an anasthesiologist for an epidural for my lumbar spine. Ah, tricky, devious illness that I may or may not have, by the time I went to see him, the pain had moved mostly to my upper back. But fate intervened, they had lost my records so no shot for me!(needs a soup nazi icon).
The anesthesiologist was the one who focused on FM. My neuro and gp had both gave it about 5 seconds thought and discounted it. Their dx consisted of "Well, we know you have some kind of neuromuscular disorder, we just don't know what.
So here I am today, close to one year to when it all began.
My legs are once again extremely shaky and weak. I'm afraid to walk because they give out and I fall - a lot. I can't seem to eat much. I'm nauseated most of the time and my body's thermometer is in worse shape than my cars - and trust me that's pretty sad, lol. I constantly have hot flashes and cold sweats. My left shoulder is in terrible pain, I can barely lift that arm. Often it feels like the muscles and tendons have been replaced by rubber bands, I feel like one of those jointed dolls on the little platforms. You push in the bottom and it pulls the bands connecting the joints and causes the figure to contort in kinds of positions. That's me.
There is a spot just under my shoulder and another at the base of my skull that both feel like someone is working 24/7, boring a steady hole there with a dull, burning awl. And sometimes when I'm standing up or trying to walk, my hips twitch like Shakira (actually not so bad, the bf likes it and it cracks my daughter up when I ask her if she wants to do the bump )
For me, most of my best moments these days are when I can make my daughter laugh, or at least smile. Obviously I'm out of work again. I lasted aprox. 3 months before ending up like I currently am - pretty much bed ridden and back on a whole slew of meds again, which while not fixing anything, are at least making it more bearable to get through the days and nights. I have an appt. on 12/7 to go for a fibro / spinal injury evaluation and pain management program at a local rehabilitation hospital.
Anyway, if you actually stayed reading this overlong ramble, I once again apologize. And Wanda and Jess, i hope this answered your original question
Peace to all,
a

pirate radio last night

Good, funny flick. I kept waiting for the knife in my gut  reaction I get when misplaced tragedy shows up in a film and was very, very, pleasantly surprised that it never came. Great casting.  Nice to get out of the house w. my sister even if  I wasn't at my best. 

morning profound thought aka "it's the meds"

When I was a child I rushed blindly into things, my heart was the only source of information needed. I listened to it and jumped (often with what seemed at the time to be disastrous consequences) As an adult I research everything, compare the data, think around every corner, consider all the facts, arguments, and people who may be affected. I spend eons on the fence and avoid taking action. I drive myself crazy.  But strangely it seems that lately despite all heavy, proper grownup thinking,I do best  when I listen to my heart, and jump.

p.s. dear m- the person may not be me, but the river she's jumping into is the same one i did all those years ago

blast from the past - my take on automotive repairs circa 1996

Rick's wedding. Wicked hot day, summer in FL. My car had been acting up for a while.  I drove the 40 miles east w. all the windows open as the ac was out.  The engine sounded like a sick dirtbike and the steering wheel was vibrating like a tuning fork. Took note of these things and chose to ignore, of course. Stopped at CircleK outside town and peeled my soaking cutoffs and tank top off against the backdrop of a conv. store public restroom.. 10 min, tons of gel, makeup, and many fevered prayers that the lighting at the reception would be in my favor, I rushed out. I was transformed in that miraculous way only  4 inch black patent leather stilettos can do for me. Started the car, heard a clunk.  Looked under it and saw a big bolt.  Had a moment of angst, did this come from my car? I tossed it in the back seat and sped off to the wedding.......

november 14, 2009

So I decided to start a blog. It's not public yet but who knows.  I recently joined an excellent message board for people w. FMS.  I started reading and posting right away...having the time to do so now.  I quickly realized that I was sometimes using the board as my own personal fibro blog. Not that I want this to be just about fibro, if that's what I have, I just want to record this particular journey in my life.