Moving

We have now been in our new home for 15 days-my little apt out back has a ways to go, so I have been living in the house until things settle down. Chai bunny seems to be better after coming very close to death several times-right now that subject is too painful to think about. Leaving my beloved cat Zoe & dear rabbit Amsterdam buried in the backyard of the old house was too much to bear. After physically moving things that last morning for fear of my parents having heart attacks/strokes, my body is still in a major flare. We had to get my last prescription of pain meds in Alabama before we left-& ended up having to go to 2 pharmacies to find them as our usual drugstore was out. The 3 of us & my bunny & their cat rode smushed up in the front seat while we towed our car behind. I would have driven as in past times but with meds & physical condition that wasn't an option. Halfway through the trip-after food orders got mixed up & other typical problems happened-the uhaul broke down. An amazing lady dressed in her nice work clothes stopped & helped us for at least an hour while we waited on help. We ended up spending the night-sneaking pets into the hotel as it was the only hotel around & too hot to leave them in the truck...& that next morning is when Chai bunny became a rag doll, totally opposite her normal feisty demeanor. We finally got here after tears, sweat, prayers, fears, you name it Monday the 16th. I've kept a round the clock Chai bunny watching vigil, while my brother dearly had people here that next morning to unload & take the truck back. We didn't have cable, phones, Internet, etc for over ten days, but we were safe...not sound, but safe. Mom found a dr that just might work for me-neurologist who seems a lot like my old dear Dr. T, but I can't see him for about a month, so we will have to find out if & where I could get meds as I'll be without them for a week or so, & going off meds like that cold turkey is extremely dangerous. The weather here is so much hotter, & mom constantly worries about dad & heat stroke as he can't sit still & wants to get things liveable. Our refrigerator broke last week...we have had loads of these things happen & I worry mom will have a major breakdown as all our nerves are raw & bleeding. Sorry to paint such a bleak picture, but if you know me you know that I have to be honest. This is my therapy-coping-my way to vent. I wanted to catch everyone up & thank you so much for the many messages I've gotten letting me know I'm not alone. More very soon-xxxooo from us

Taken the morning of he move-sitting on the floor trying to get magical strength

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Sick opposites attract

So many professional sick people I talk to feel they need to be one thing & yet of course often feel another. We feel strong for just fighting & making it through another day, but so weak for not being able to somehow just smile & overcome. We try to love ourselves but hate our bodies & our diseases/illnesses so much. Many others tell us we seem well & we don't look sick. I love to be happy & laugh, but find myself crying over the laughs & relieving the pain. I want to be positive & be grateful for the good things. I really do, but some nights it is all I can do to get through until morning.

 

For a fool

After basically floating through ages 8-26 due to death of my brother, anorexia, endometriosis, etc just to mention a few things, I finally woke up for lack of a better phrase at age 27. I was like an 8 year old emotionally in a 27 year old body. That served me well in that everything-each sensation seemed so amazing. I was such a child but honestly so. On the downside I was & still can be so trusting. Things like dating, etc takes on an entirely new meaning when you should know better but you honestly don't because you missed the part where getting equipped was taught. Now that doesn't matter as dating isn't even a blip on some far off telescope. My last date, kiss, etc was like 8 years ago, & I don't see that changing. That's ok, as just getting through a day is enough mental head games on its own. However, when the knowledge base of what friends are comes into play, as a emotionally stunted teenager in a 41 year old form, I expect different things. I'm more cynical now that I'm 13, but still really get my feelings hurt like a 7 year old would. My mental formation grew up much too fast & yet was stunted so much. Add to the mix the chronic pain nightmare & you really do learn who your friends are. As soon as I got diagnosed with fibro, my grad school really good friend, girl G, well, she thought I was trying to get out of work. Needless to say that broke my heart & I hear she's married & maybe has a kid. Crazy as I was with her the night she met her husband. As my mom says 'consider the source' & I do but wow it is very gut inducing painwise. People like me (sickies) go through things like this, but I think most of us have that one person who really break our hearts. Like a detective who has that one case that still keeps them up at night, & even though they know they will never get their answers, they hold out hope. Listening last night to the just delightful band The Shins, I heard off their new album a song For A Fool. For me it took me to the heart of that friend who you know is gone-but still you hope yet know you were a fool, albeit innocently, for believing their words. Their rescue plan. Their liquid courage laced lies. I'm been wracking my emotions for 6 years about this friend, & hearing that song I want to say that no longer will I listen or hold out any hope that they will someday get real & deliver the friendship expected or deserved. I really hope this time it sticks.

 

Get out.

Physically & emotionally the past day or two have been awful. Scale of 1-10, a 17. When I went upstairs yesterday to check on Chai bunny & try to examine her & see if she is still sick (long story, but she's possibly sick & I'm still freaking) I took this shot of her. She was mad, sick of me trying to examine her, & mad that I've been spending all my time downstairs while the parents are gone, & I'm taking care of Macy cat,who is also sick. We should just open a damn clinic here. This picture is so cute & funny, & after I took it Chai took off to the corner & thumped loudly to show her frustration. I don't blame her. Sitting here crying I see myself looking into the tunnel watching fibromyalgia among other things take over my life, no matter how hard I fight to keep going. God I just want to give up yet also just beat the shit out of it-& I can't really do either. It's so frustrating. The toll constant intense pain has on a person can honestly drive them to madness, in a heartbeat. How long does that heart manage to keep beating?

 

Modern Leper-Day 11-Theme Song (WEGO #HAWMC)

Today I'm to imagine if my blog had a theme song...words, music style, etc. After the day I have had I can barely sit up, much less write a song, but I have a song so near & dear to me that anything less wouldn't be fair. I had gotten a free sampler & at one of my many neuro apps, like 3 years ago, in the waiting room came across this song. It stunned me? It had lyrics like 'I am I'll, but I'm not dead, although I don't know which of those I'd prefer'. It was raw. Honest. Yet set to the happiest Scottish barn dance tune (not that I've been, but you get me) & had awesome cuss words that emphasized my wanting to fight in an honest manner, & I don't know of many in this illness(es) who haven't used bad language-it's a savage disease. I don't give it the upper road courtesies of not sinking to it's scheming manner.

Today I had my left sciatic nerve shot full. Was told I needed a spinal tap next month, May 6th, to again rule out MS. Didn't get a pain shot but instead out of the blue got pulled into a physical therapy meeting. Those two women knew more about fibro than most doctors. They had to push in on a spot as we talked about the possible lymphedema in my leg, & it felt like they had electrified my sciatic nerve with a taser. They feel my sciatic nerve is so bad it could be breaking blood vessels sideways from swelling hip to ankle & not necessarily lymphedema. They helped but holy shit, where she pushed in on my hip feels like I got hit with a sledgehammer. I was numb yet hurting so badly, & on the way home, once again, without discussing it with me I questioned dad on something & he had to admit that they found a house a few weeks ago, put an offer, got it, & close on it just days after my spinal tap. When asked about doctors? 'none yet that can help with the pain medication treatment plan, but 4 possibles to watch your spinal implant' if I get it. Wait, so he thinks fibro is boiled down to just my back? Are you freaking kidding me? And they promised we would not move until a doctor could care for me like my 3 doctors here do. Guess that's out. I turned on the latest Ryan Adams cd, stared out the window, & haven't seen them since.

 

The Modern Leper, by Frightened Rabbit

A cripple walks amongst you
All you tired human beings
He's got all the things a cripple has
Not working arms and legs
And vital parts fall from his system
And dissolve in Scottish rain
Vitally he doesn't miss them
He's too fucked up to care
Well, is that you in front of me?
Coming back for even more of exactly the same
You must be a masochist to love a modern leper
On his last leg
On his last leg
Well, I crippled your heart a hundred times
And still can't work out why
You see, I've got this disease I can't shake
And I'm just rattling through life
Well, this is how we do things now
Yeah, this is how the modern stay scared
So I cut out all the good stuff
Yeah, I cut off my foot to spite my leg
Well, is that you in front of me?
Coming back for even more of exactly the same
You must be a masochist to love a modern leper
On his last leg
Well, I am ill
But I'm not dead
And I don't know which of those I prefer
Because that limb which I have lost
Well, it was the only thing holding me up
Holding me up
Well, I'm lying on the ground now
Walking through the only door
Well, I have lost my eyesight
Like I said I would
But I still know
And that is you in front of me
And you are back for even more of exactly the same
Well, are you a masochist to love a modern leper
On his last leg
And you are not ill
And I'm not dead
Doesn't that make us the perfect pair?
Just you and me
We'll start again
And you can tell me all about what you did today
What you did today

I'm humble enough to ask

I wake up from loosely based sleep, in which stress dreams plague me all night. And all of yesterday afternoon, & the night before. If I was on the battlefield with a sword in my hand, I'm pretty sure I'd lay down my sword & hold my head high. After waking & unable to shake off the impossible dreams, Ryan Adams 'Save Me' is running through my head. I listen to it then find an old friend, Aimee Mann's brilliant 'Save Me', from the stunning film Magnolia.

http://www.youtube.com/watch?v=urMq9XYzqC4&feature=youtube_gdata_player

I know a hero...white knight isn't going to ride in and fix me. The question remains though. I'm at the point I am humble & humiliated to know I can't save myself. Not this weekend, not this too early morning, not this day. The morphine, ice packs, heating pads, & soft Chai bunny ears nudging me for touch are doing nothing to lessen this overwhelming pain, & I'm not above asking for saving.

 

#HAWMC WEGO Health blog month, day 7.

Submerged

For a chronically sick person, we all know that whether it's physical or emotional, etc there is the overall picture. Pretty parts, confusing parts, abstract bits, things you somewhat understand & some that are baffling, but if you look at the close up, there is so much submerged below the surface. Much darker, supportive, hidden parts. My hidden things are so humiliating. So embarrassing. They make me feel like I'm 7 yet 87 at the same time, yet I'm no Benjamin Button. As open as I am there are a few things I keep deep, deep down for fear of the reveal of some things that happen often & feel so crushing.

 

 

Masks

We all wear masks at times. Mine lately seem to be mask of the unknown future. Mask of a move. Mask of the old me. Mask of saying nothing & keeping the peace. Mask of hiding how scared I am of leaving my doctors. Mask of feeling forgotten.

 

Ying & birthday yang

Birthday candles through the Percolator App

Birthday self portrait 9:45 PM, upstairs, alone.

 

Worth at least a few words

After yesterday's adventures in dentistry, these pics show better than I can explain how I feel on the outside, inside, my physical self, emotional self, mind, soul, heart, & brain.

 

 

Self in fade

Often times seeing family, as fantastic as it is, leaves me lonelier than I thought possible. My siblings, both close to my age, married & with great kids is very bittersweet. My glowing, honest, thorough joy for them is also shadowed by the me that could have been, or the possibility that one day it could change. Dad asking in front of the group to go to the movies with hem, knowing fully how bad it is just riding in a car, much less being in difficult seating, trying to walk distances so tough, but feeling like there might be a slight hope that maybe I'll say yes...cos I don't look sick. How do you explain how most chairs are torture chambers? That sitting at the table for 30 minutes leaves one in excruciating pain later that night? The gracefulness that they hopefully will never know that pain, but the frustration felt looking in their puzzled eyes as they try to understand.

 

Illness with a side of depression

 Sometimes there are no words, too many tears, and so much unwarranted guilt. Only pictures can tell the whole story.

 

 

Present skin

 I have a pinched nerve in my back, which after the fall a few weeks ago has been truly unbearable. Like I want to blow my head off or be put in a coma just so I won't be aware of the pain. A few minutes ago, I reached back to adjust the always present ice pack for inflammation that has filled my body like I'm a pod person, & when I did I barely grazed my skin. Not with a fingernail, not with anything sharp-just my finger barely touching my skin...& it felt like I had taken a lit match & held it there to burn & fester. I try & see my life like this pic-the left exciting, with beautiful colors & tons of pebbles representing events, Super Bowl parties, travel, drinks with friends. The right side is my now life-giant circles of bland colorless life.

 

Fading & dividing

 I got this new app called Percolator, & it's awesome. It gives new movement & design to all my normally raw pics. Experimenting with it is so fun, & also telling. It fractions & divides & fades my pics just like my illnesses are doing. It shows how I am breaking apart into wee little pieces, as the old me slowly fades away...but it's a great app! 

 

My eyes realizing

Tonight I realized...I can't go on living here. I can't live without a dr in Arkansas. I can't keep my parents saddled with me. I can't hold them back. They've spent so much time house hunting, yet no time dr hunting as no one there will take my case. I can't keep going to sleep having nightmares only to wake up exhausted, depressed & worse off then when I went to bed. 

The yes when you realize there is no end. To pain, to a life, to a good living situation, to peace, to going on any longer. 

the sound of rushing blood

today i went to my dr to see if i had this bizarre Lymphedema. as they had worked me in-and we had waited for 2 hours, and there were so many people in the waiting room that the office had to put out extra chairs, i left there with more questions and a 'damned if you do, damned if you don't" feeling. first things first-when my beloved dr walked in, i could see for a slight second what her feelings were-she was exhausted already-had a ton of people yet to see, etc., but it flashed across her face briefly the look of "oh no, puzzle health girl is back'. i know she doesn't think of me that way-but we have frankly discussed exactly that. it hurt my heart, though i knew she didn't mean anything at all badly towards me. she set her nurses up with the instructions of getting me into a blood supply/vein study ultrasound. pic below of me, fading away from me and into my pain and illnesses.

one huge side note-the only way i can stand to sit is 'indian style'. i hate saying that in case it causes offense, but other than the lotus position (which really is different) i don't have another way to say it! it kills my back, pinched nerve, all and everything when my legs are hanging down, stretched out in front of me, etc. this has always worried my parents, and she said to try and not sit like that-and i get it-but if i sit properly it makes my back much worse, and for lasting periods of time. if i sit indian style, evidently it could be causing this insane swelling and awful pain from hip-ankle. so either way...???

we left her office with an appt. to see her next week, the day after i get spinal shots which isn't going to be possible as i can't do anything, especially sit in normal chairs in a waiting room a day after needles are plunged in my spine. driving 2 hours round trip next week to get shots, then to have it all be a waste if sitting and waiting in her office would kill me. just another side note.

i went a few hours later for the ultrasound. basically it was pants off, tuck towel into panty leg to keep gel from getting all over them, and the very nice tech had to go from groin to ankle and listen to blood flow-which sounded awesomely cool by the way, but then in three place-above knee and below knee and in the groin-push down with the ultrasound stick as hard as she could for a reason she said but it hurt so bad i didn't hear. it might not hurt the normal person, but for a fibromyalgia girl with swelling that hurts anyway-along with tender/trigger points, i barely managed not to cry. she couldn't tell me anything but will send it through the radiologist, then dr, etc. etc. etc.  pic below-my hand covering my girl bits and the veins and pathways of my blood flowing.

i got home, and after only sleeping about 3 hours the night before slept from 3 PM to 3 AM. i am so sore-everywhere she pushed really hard is throbbing, and i feel like my body was put through a pasta maker to make the flattest noodle-so no real news yet-and a lot of questions and pain. ; (