just your average 32 year old singer/ songwriter/ musician/ creative-type from milwaukee who's kicking a little butt on the autism front, fightin' fibro like a mofo, and still has time to be a mom to the most amazing little boy on earth. or maybe it's the other way around...
All these things left in a pile; the bricks I were to lay for a path to my front door, the pillows I wanted to sew, the clothes I meant to sort, the bins I intended to donate, the floors I wished I had cleaned, the dishes I can’t find the energy to do, the paperwork that needs to be shredded. Left undone simply because I needed to shower that day instead. Or cook. Or take my son swimming.
It’s an easy choice; I am obviously going to do only the things I need to do. Taking care of my son comes first, followed by whatever I have to do to make myself or my home able to do the things necessary to care for him. That’s it. That’s all I have energy for, and sometimes I don’t even have energy for it.
And it’s not just the energy. It’s the pain. Taking a shower hurts now. The rigorous movements of my arms aggrivate my bulging thoracic disc and before I know it I’m reeling in pain. Most days I don’t shower. This has been the biggest blow to myself esteem because althouh no one would guess it just looking at me, I know they can see the decline in my hair care and makeup… but they still would never guess that most times I haven’t showered in three days.
Three days is an eternity when you are used to meticuously grooming and bathing daily – no exceptions! Every day I woud shower, wash my hair, shave all parts that needed shaving, blow dry my har and style it, apply perfect makeup, and coordinate my bra and underwear with my outfit. I colored my hair monthly and cut it myself every few months.
Once I had my son and my fibro started to balk at the lack of ability to sleep all the damn time, I started to chop off my hair so I wouldn’t have to deal with it. I mastered the art of the 5 minute shower and began to skip shaving every few days. I also found I had to start cutting back my work hours…
Before long I couldn’t work a regular 8 hour shift. Thankfully I was able to move on to my dream job where I worked several 2 hour shifts a day. I maintained like this for a feaw years, with a trusty increase in flares any time I picked up more hours, until my back went out.
Now I rarely tend my hair. I never wear makeup unless I am really trying to impress someone. I wear only stretchy clothes. I never shave. I shower about twice a week. Last week I ran out of deodorant and was too sore and tired to get to the store. For a while I couldn’t even shop for groceries.
When I feel like hell, I stil have to make meals and tend to the whims of a rambunctious 4 year old all day long. I have my cheats for really bad days – movie theaters, mcdonald’s playland, and a few close friends whoalso have children. If I have a really great day, I get as many of the things that I have had to put off due to pain and fatigue done and out of the way – dishes, organizing, some minor decorating. Everything else, though, has been put on hold indefinitely: the backyard playland, the frontyard garden, spraying the lawnwith weed killer, sweeping the patio, putting up the festive summer patio lights, organizing the laundry room, maing my own bedroom beautiful.
It all has to wait now. And it as all been waiting for a full season. I used to plow through these things, then I learned to pace myself, and now I am simply stagnant.
Some of it I have learned to ask for help with. Some of it I have learned to keep waiting for that perfect moment. Some of it I have learned to just let go of… and some of it I hide.
These piles of things, piles of me. Little leftovers of a life, scattered all around my house.
They just are.
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Google BookmarksWhat i want to say during autism awareness month…
My friends, please look at my friend list. About 10% of the people you see are affected by autism – either by having a child on the spectrum or by being on the spectrum themselves. I have been blessed to be a part of their lives either as a friend or as a consultant, and this is what i want you to know about them all.
The kind of autism that is difficult for the world to handle is NOT rocking and flapping in a corner; it is melting down in your local department store or showing up as frustration on the face of the mother standing next to you at the park. It is a child, a person, a being, never having the chance to be fully accepted and therefore their family is never fully accepted. It looks like out of control, it looks like bad parenting, it looks like naughty… BUT IT’S NOT.
Every being with autism is so different… You cannot assume anything other than the fact that autism will, in varying ways, affect the nervous system, impede social skills and understanding, and challenge the ability to effectively communicate.
For one moment imagine you had to go a day without a voice. Or that you had to make it a whole school day with invisible clothespins pinching your arms and legs. Or that you knew what you wanted to say but just couldnt get it out, or even that everyone around you were suddenly speaking another language… And yet everyone expected you to carry on and do what they expected.
And then tell me how long it would take for you to be “naughty”.
I want you to change your perception of autism and the people you often see aiding it… Because it’s not what you think it is.
Be kind, for everyone you meet is fighting a hard battle.
SEND AUTISM SOME LOVE!!
Dear Doctors,
You have failed me. I came to each of you in excrutiating pain, and you sent me away with Valium. Dr. X, you sent me away with nothing.
All of you refused to treat me once you found out I had Fibromyalgia. Dr. X, yours was the most blatant form of discrimination I have ever witnessed, as you proceeded to explain how my pain was all in my head and that the proceedure you are listed as being able to do would nver be able to help me. You pulled out a needle and told me “see how small this is? There’s no way I could find just the right spot with this. I could do it and it would do you no good if it doesn’t hit the right spot.” Yet I’m sure you continue to do these trigger point injections every day.
I’m sure you also continue to treat all your patients every day. Isn’t everybody’s pain “in their head”? Your hand doesn’t hurt, your nerves send signals to the brain which are interpreted as pain. So therefore, everyone’s pain is in their head and you should not be treating them.
I may have Fibromyalgia, but I’m not stupid.
You also referred me to a pain psychologist, telling me “I can’t force yout to go. I’m not going to drive you there.”
Dr. Y, you sent me home with Valium and told me to try accupuncture. Dr. X, you told me to go hiking. Dr. Z, you also pushed Valium and then made some comment in the hallway to your intern in reference to my pain being due to the fact that I haven’t been taking the meds you prescribed (I havn’t taken them in a year). You should teach your intern to close the door.
I came to all of you with visible lumps on each side of my thoracic spine and spasming, burning pain around my ribcage that made it hard to walk, drive, and even breathe. But my Fibromyalgia kept you all from doing your jobs. Had you done your job and sent me for an MRI, you would have seen the degenerative discs and bulges causing my pain.
But you didn’t.
And because you didn’t I lost my job.
I also spent ten weeks in total depression and extreme pain, without any hope, on my own with my four year old child who thought Mommy didn’t love him anymore because I could no longer carry him.
That physical therapy I begged you for when you first saw me, Dr. Z? The physical therapy you believed I could get from the chiropractor? The chiropractor was the only person to show me any compassion and really try, but regardless of how hard he tried he couldn’t stop my spasming. He then sent me to the physiologist Dr. X who blew me off. That is when I demanded physical therapy and you finally gave in.
Physical therapy found me to be riddled with massive trigger points, and they were able to offer me the first drop of relief through the very painful process of pressing on and reseting the trigger points in my ribs. I could finally breathe, but I was still majorly restricted and miserable. I asked if I could have a bulging disc, and they all said it was near impossible to get one in the thoracic region.
It was then that I myself noticed the pain clinic next door. None of you referred me there. None of you helped me find it. I did. And I made an appointment with the very brisk Dr. Purewall who terrified me… until he cured a majority of my pain.
He didn’t care if I had Fibromyalgia. He didn’t care if bulges in the thoracic region were rare. He knew that pain radiating around the ribcage was a bulging thoracic disc, and the MRI proved him right. I’ve had a total of two epidural cortizone injections that have drastically reduced my pain. I still need a lot of help, but now I have hope – something you all took away from me.
While my back was finally on it’s way up, the rest of my body was falling apart. I had no one to turn to for Fibromyalgia treatment, and my muscles were all slowly turning into bricks regardless of the stretching and exercizing.
I want you all to know that on my own, once again, I was able to locate a doctor who was willling to look at me as an individual, as a person in pain – not a person with “untreatable Fibromyalgia”.
And those trigger point injections you were so incapable of administering, Dr. X? I received four in one session, and in the middle of the very first injection my hearing came back. When all four were complete, my solid as a stone shoulders were mushy for the first time in my life (since I was twelve years old) and my headaches were gone.
Dr. X, I wonder if your current patients know of your inablity to perform these injections? I’m genuinely concerned for them all. I wouldn’t want someone sticking needles in me if they were unable to locate the correct spot…
No thanks to any of you, I am now, finally, getting appropriate treatment – four and a half months later. Thanks to all of you I have no income because I have no job, because none of you would listen or look beyond my Fibromyagia. Now that you all are familiar with eachother, I hope that there is a class, inservice, or perhaps even an online training that will both explain tact and Fibromyalgia to you.
I’m also returning the remainder of the Valium prescription that most of you kept pushng on me. I highly suggest that you all try it in suppository form.
Sincerely,
Ms. Stacy Michelle Ihlenfeld
Extremely Disgruntled Patient
Oh sweet freedom! My serial key came in for my blueinput app, and now I am happily clicky-clackying away on my targus external bluetooth keybooard. Oh happy daaaaaaaaay!!!
I suppose this is how I know how awul I’ve been feeling for moths now – I was unable to blog using just my touchscreen keyboard on my droid. Sometimes I couldn’t even hold my phone let alone type on it. It took a while to track down the perfet keyboard, and all the while I felt ridiculous and also a bit indignant. “WHY CAN’T I BE NORMAL???!!!”
Cuz I’m not. Duh.
Since December, I’ve been at home writhing in a corset of pain. Bulges pressing on my spinal column in the lumbar section of my back have been causing constant cramping, spasming, burning, and shooting pain around my entire ribcage. At four weeks I though about offing myself, but my apparent lack of any mental illness and my extremely strong desire to be with my child kept me from doing so. Anyone who says they have a “high pain tolerance” should have to go thrugh what I just did… then we will see if you have such a high pain tolorance. I’d also like to test out anyone’s high “I won’t murder people” tolerance, for at this point I had been sent home by several doctors who thought accupuncture or valium were great ideas. One even told me that “since there’s no cure for fibromyalgia, you should just go hiking and exercise. The pain is all in your head.” Meanwhile, the visible bulges on each side of my spine continued to grow, the pain continued to increase, and I became more and more hopeless and depressed. I also had to come to terms with the possibility of losing my beloved job.
At eight weeks I received my first bit of relief as the physical therapy I fought for finally began to break up trigger points in my back and sides. At ten weeks I finally got an electronic stimulation device and I wore it all day long every day until the pads would no longer stick and stay on. At this point, physical therapy began to fail me as they stopped working on my trigger points. I took notice of a pain clinic right next door and decided to try it…
The doctor was cold and brisk. I was certain that this was going to be yet another waste of time. “You have pain that goes around like a belt? You have bulges in thoracic. That is the only thing. Get MRI and come back.”
What? Seriously? I knew how this game went… I go for the MRI and they find NOTHING per usual. Yet when I got the report I couldn’t believe my eyes. He was right. Even physical therapy was wrong as they kept telling me that getting a bulge in the thoracic reagion was near impossible.
Clearly they didn’t realize who I am.
So a few weeks later I was scheduled for an epidural of cortisone. And then another. And now my third will be coming up and I can, as of just recently, finally breathe. Three months later I can breathe.
The giant vice grips around my chest and therefore my lungs have finally let up, but with the price of 15 lbs of weight gain. I practice walking with a shopping cart at random stores which, of course, increases my spending habits… but at least I have a cart to help balance myself and to lean on when need be. Without a cart I can’t really go for more than half a block. I still get random spasms and shooting, burning pain. I still have a hard time breathing. Driving, wasing dishes, sweeping, picking up my child, sitting or standing for longer than 30 minutes (used to be 10) are all near impossible.
All of ths on top of fibro!
I’m in the home stretch of my disability application. I saw their psychologist and just finished with their physician who made me feel quie hopeful at first but then let me down at the end by saying “you shold go back on your meds. Then you could go back to work. You’re too young to be so sick.”
In my head I screamed “IF THE MEDS WORKED, I’D STILL BE USING THEM!!!!”
In person I calmly told him, “I kept track of my symptoms for three months straight before I decided to stop taking them. There is not much difference between being on them and off them. On them I get a little bit of relief with a lot of side effects such as visual trails, more exhaustion, and profuse sweating. Off them I have slightly more painbut no side effects. Seems like a no brainer for me.”
I thik he stopped listening before I finished.
I know their doctors don’t make the decision whether I’m disabled or not, but I worry because those are the statements and attitudes I have always been presented with and they have gotten me nowhere. I am now able to speak up for myself and kindly tell a doctor where to shove it, but years ago I would have left in tears. No one has directed me on the right path. I have had to do it all myself based on hunches and gut feelings, my own research, and sometimes mere coincidence or even simply dumb luck. Every day I battle “experts” who say nothing is wrong… yet here I am in PAIN. For 23 years, in pain.
Fuck them.
As a side note, if I hear or see one more article touting “positive thinking is the cure for fibromyalgia”, I’m going to stab someone. You come be positive when every doctor you see saps the hope right out of you and basically tells you that you are crazy. Come be positive while you get written up at work once again for always calling in sick, while you lose your friends because they are tired of being cancelled on, while you lose your mind and can’t remember where you live or where you parked your car. I dare you to do it.
Positive thinking has it’s place. I am positive this is a trial I must endure. I am positive none of these doctors know what the hell they are doing with fibromyalgia. I am positive I will shoot the next person who claims to have such a high pain tolerance. And I am positive that everything truly does happen for a reason. Yes, even my fibro.
Fibro has taught me patience with myself, something I only had for everyone else. It has also taught me toughness with others where before I only had a doormat mentality. It has blessed me with a type of sensitivity to others who are suffering or different that can only b descrbed as a direct link or sixth sense. It has also enhanced the beauty of this earth and my existance in very mysterious ways.
So, yes, it sucks, but unless you have it don’t you dare tell me how to live or how to be positive or how to react to things.
And please please please accept my disability claim.
I think this is the end of my rant. Not very cohesive, but not being able to type for a few months will do that to you. 
I’m thrilled to finally have this all off my chest.
Now. On to better things!!
I’ll be the schemer and you can rip the seams
We’ll rebuild and piece together the patchwork of our dreams
And when we’re done
It’ll look so strange to everyone
But we’ll be home
Yes, we’ll be home.
There are rules for using online dating sites. Just because no one posted them when you signed up doesn’t mean they don’t exist.
#1 the point of a profile is to give someone an idea of who you are. Generally you want to give them the best looking idea, but an idea nonetheless. This means don’t lie, don’t lie by omission, and don’t only talk about how you can stay in or go out or how you like everything but rap and country. Really? Wow. You’re such an enigma… look just talk about what’s important to you and your life and if you happen to not know yourself then have a friend write something for you. Nothing is worse than reading a profile that says nothing. The point is to help people decide if they are into you. And that brings me to…
#2 be interesting. Not “not yourself”… just interesting. Don’t send messages to people that just say “hi.” or “what’s up.” Why? Because those questions can be answered with one word AND you are the one who is interested in the other person, so you need to pique their interest. Let’s face it – if they were interested, they would have messaged you first! If you send out a message that can be answered with one word, it ill be answered with one word or not answered at all. And this brings me to…
#3 it’s the internet so two things apply – 1) we have the right to be picky and browse and read and stare, and 2) we have the right to not respond. It’s the essential beauty of the internet – anonymity. I don’t have to see your puppydog eyes when I tell you “no” and you can’t get creeped out when I download your picture for the 40th time. Stop getting indignant over people not responding to you. If they were interested, they would answer. It happens to everyone. And with *that* I bring you to…
#4 you don’t know DateyMcGee83. Do not fall in love with DMG83 based on their pics, or after one date, or even after three. Don’t commit suicide if DM83 doesn’t answer your 49 messages or never calls you back after your date. Don’t make out with DM83 on the first, second, or even third date. Hell, don’t do it for 3 weeks. Why? BECAUSE YOU DONT KNOW DATEYMCGEE83!!!
If you truly want to be in a happy relationship, know who you’re dating. After you Google search, CCAPS, and Facebook stalk them, wait to fall for them until after you’ve seen them handle a bad situation. You may have to wait a while, but it’s easy to put on a front when things go well and not so easy when unexpectedly bad things happen. Also, pay attention to what they do and not just what they say. AND don’t be so eager for them to be everything you want – you’ll end up seeing only what you want to see and either covering up some serious warning signs or missing out on some awesomely surprising things.
Now take these rules, go forth, and get your creep on. Just be honest, interesting, thick-skinned, patient, and keep your damn tongue to yourself for at least a month! <3
I know what it’s like to dig a cave with your bare hands.
I know where my undoing could be several times.
I’m aware of every breath.
I know to memorize an angel’s face when I see one.
I hold an ancient ache, a set of wills stronger than anything you’ve probably ever seen.
I will always dance in the storm.
This is me.
sometimes I get an inkling, a scribble or a sketch forming in the corner of my mind’s eye of what will be. warm, sunny, better. I ease into it like a good stretch and find that different isn’t so scary anymore; it’s exciting.
as soon as I believe it, I’m living it. yes I’m still in the now but there is a sheet of tracing paper laid over everything and my inkling gets to dance all over it, reshaping and recoloring wherever it sees fit.
it’s not too long afterwards that the transparency can be quickly slipped away like a magician pulling off a tablecloth, and all the ink stays.
I’m so there right now.
as if my plate hasn’t been full enough already, this is the week I register my son for 4K.
it’s absolutely terrifying. I don’t even know how people survive this. as a matter of fact, I don’t think anyone does and it’s all just a lie. they kill off the parents and replace them with robots. I’m sure of it.
all joking aside, I really am traumatized. I don’t know if I want someone having 8 hours of influence on my child a day. and then they get them for 8 hours, and I get them for 5?? wtf?? and… and… and…
WAAAAAAAAHHHHHHHH!!!! MY BABY IS GROWING UP!!
guess what – he no longer wants to spend all day with me. that’s a lie. he hasn’t wanted to spend all day with “just me” since he was like 2 ½. he would wake up and look at me like, “really? it’s just us again?”
won’t this drive us apart? how will I know what he’s doing? who will be his friend? is the teacher going to be a jerk to him? Omg I’ll kill her. will he try to kiss all the girls???? he looooves girls.
I’m terrified those hours together after school won’t be enough. and that’s it… it’s just like that for forever!! school then college then a job then a family… Omg!! my baby! he’s only 4 and the rest of our lives are already carved out…
he likes to count. he can actually add and subtract up to 5 on his own and up to 12 with counters. he wants to spell and tell time. and dear lord does he want some friends.
so it’s OK to let him go, right? like no one dies just from going to school? and he’ll be happy and well adjusted, and our time together will be quality time instead of quantity time… right?
right?????
:/
in three days I will have been in constant pain for a full month.
having fibro, pain is the status quo as I am very rarely without it. however, this is above and beyond pain. this is writhing, tortuous pain. this is smack you in the face, stop you in your tracks, halt your life and the entire world pain.
as the month nears closer and the doctor appointments pile up, I have moments of respite. I have moments without pain. but they are only moments.
now the hard part is not managing the pain – I am a pain expert. no, the problem is managing the moments without pain – the moments where, if I smile or appear to be normal, I fear you won’t believe my pain is real.
why? because that’s the way it’s been for 23 years. I’ve officially held the title diagnosis of fibromyalgia for a mere 5 years, and have found these years to be more difficult at times than the years I spent thinking I was crazy because now there’s a stigma I always have to fight against. there’s a convenience to understanding me on somedays and not others it seems. I find less and less protection within my job and community as it is easier to believe I am just sickly or lazy or faking than that I have an actual neurological disorder. and, no pun intended, it hurts.
I can’t control when, where, or how long but my job often expects me too. I’m weary of explaining myself and defending my body. I’ve spent many years giving more than I was able to and this month in hell has stopped me mid-motion and screamed into my face “YOU HAVE TO STOP NOW!!”
stop and do what? I don’t know. better? more? less? nothing?
none of this is easy, but the worst of it, the lowest blow, is not being able to work.
if all my life I’ve prepared for greatness in my work and then am suddenly unable to work… how does that register? I’m no longer great? I’m no longer worthy or valid? who the hell am I if I can’t do what I do?
and if you’ve always known me to put on a smile and just go go go… how can you understand that I now need to stop? how can you comprehend my former “it’s OK” attitude jerking into a solid “no!”
this is a lot of change for me at once, and I can only assume it will be very hard for others to understand. I don’t know exactly how I will manage, but I do know that I will no longer feel badly for having very real needs and very real pain regardless of anyone else’s attitude towards them.
and the rest… we shall just have to wait and see.
