challenges

357: My Pain Conditions

| Aspergers Girls

I don’t often talk or write about my physical pain, mostly because pain does not define me as a person. Currently, I have several pain conditions. I suffer more in the winter months and do amazingly well in the summer. Sometimes I can get hit with flare ups from multiple conditions all at the same time, typically around my womanly cycle. That was this last weekend, and yes, that was basically hell.

The pain is not so intense that I require pain killers to function. In fact, I usually only take one over-the-counter pain killer (Tylenol) once or twice a month. I save those beauties for the super tough days. But the pain is always with me; it doesn’t go away.

In doing research about hyper-joint mobility syndrome (closely related to EDS, if not the same?) I discovered it is not uncommon for people with this type of condition to have extreme fatigue by mid-afternoon. That is me for certain. Each day at about four in the afternoon, I am ready to settle on the couch. If I sit, in the latter part of the day, then I will have a difficult time getting back up. Sometimes I have to move all day, e.g., standing, walking, cleaning, errands, etc. because more often than not, as soon as I wind down and take a rest, I won’t be able to move much anymore. That’s why I am prone to spend one or two days a month doing massive non-stop cleanings of the house. It’s the only way I can do housework: all or nothing. Housecleaning itself usually sets me back two to three days in intensified pain, but manageable.

When I take my three to five-mile walks, most days in the summer, and a few times a week in the winter, I am fighting through the pain. Pain in my knee joints, hips, and sometimes back. When I say, “I am taking a walk,” it means a lot more to me than just a walk. Forcing myself out the door means forcing myself through the pain.

Simple tasks, like opening a lid on a jar, bending to retrieve something from the floor, or walking up and down stairs, hurt. I don’t loosen up and feel better after stretches. Stretches actually make me feel worse. My pain feels very much like what I imagine a person would feel after he or she hiked ten miles up hill. It is an all over, generalized body-ache. Sometimes I feel like I took a huge fall or was run over by a thousand little trolls. There are also specific areas in my body that flare up, in the sense it hurts more. I don’t actually swell or get red in areas. Flare ups usually happen in my wrists, fingers, elbows, hips, spine, neck, knees, etc. I am sure I am leaving out some area, but you get the picture. The flare ups feel like a dull ache, not severely painful like a tooth ache, just painful enough that sitting here now, as I type it feels like parts of me are throbbing and/or burning.

I am thankful I can go through my days and still function. I can climb stairs with ease, despite the pain. I can clean. I can walk. I can drive. Somethings that are more jolting on my muscles are actually dangerous for me, as I never completely heal from injuries, and actually develop something similar to scar tissue where the collagen should be healing. Thusly, I still feel the three times I suffered whiplash from car accidents, the time I took a hard fall and landed on my left shoulder, and the time a glass-framed painting fell off the fireplace mantel and landed on me. Those pains won’t ever completely go away.

My children are used to seeing me on the couch. It’s what they have grown up with. What they know as familiar. It’s one of the reasons I find so much time to write. Fortunately, when I write, I can escape my body from time to time. I think my pain is one of the reasons it is hard for me to practice being in the present moment. I am fairly certain that the combination of sensory (bombardment) challenges, Post-Traumatic-Stress Syndrome, and constant pain, make it difficult for me to want to be present.

I wake up several times a night during the harder days, usually from the hip pain. I have to shift my body a bit, and then I am able to fall back to sleep. I consider myself fortunate. I fall asleep easily at a reasonable time of night and stay asleep for the most part. However, part of the reason I fall asleep is because I am utterly exhausted from doing relatively little all day. Just sitting on the couch hurts.

I maintain a fairly good disposition. As much as I hated hearing my mother repeatedly tell me that “Things could be worse,” when I was growing up, it is true, they could be. I do have some almost pain-free days. And on those days, I can truly appreciate the beauty of just being. And on my high-pain days, the longest stretch usually lasting five days, I can remind myself, or ask my husband to remind me, that this too shall pass.

I don’t worry too much about the future. My pain has been pretty stable; in other words, I have felt this crappy for about fifteen years and the crappiness hasn’t increased, at least.

I know NEVER to run; even a short fast sprint to catch my dog will result in body pain for several days. A tumble or a fall might keep me down for a week. And the only “minor” surgery I ever had, a small laproscopic “scraping” for endometriosis, took me a year to heal from. It should have taken two days. And, yes, I still feel the pain there, likely scar tissue that never will heal.

I am super thankful I listened to my angels about six years ago. I was scheduled for a full hysterectomy. I had the operation date, and was already setting up childcare when I heard a distinct and audible: “No.” I can’t imagine what would have happened if I had the surgery. I don’t think I would have ever been the same. If minor surgery took me a year to heal from, what would major surgery have caused? Plus, my acupuncturist at the time, a healer I still see when I travel to California, she gently had offered: “I would not take out any part of a body unless it was a life threatening condition.” In other words: keep all your parts as long as you can.

I think sometimes I accept my pain conditions too much, to the point I practically forget. I get super down on myself for not being able to get up and go, to run out the door and go toss a ball or shoot some hoops. Like other things in life, I sometimes long to be “typical.”

Sometimes I make a sacrifice and will do something I know will cause me days of pain, like painting or roller skating, riding a roller coaster, chasing my son, or climbing hills. Sometimes the sacrifice is very much worth it!

The pain has been a gift in many ways. Like I said, I appreciate the days of less pain. And the days of almost no pain are like heaven. And I have been able to spend valuable time with my children. If I didn’t have this pain condition, I dont think I would have left my teaching job (I am disabled.), because I loved teaching and brought income home for the family. If I was still teaching, I would not have been afforded the opportunity to be a stay-at-home mom and to homeschool my middle-son with Aspergers.

Because of my experience, I have gained empathy for those in physical pain and/or with chronic fatigue. And I have gained a remarkable awareness regarding my own body and my needs.

I also am blessed with a patient husband who never complains when I am down. And I get to experience his love demonstrated through service and support. I have seen miracles, too. Like this last month, when I drove over 1600 miles, in a few days time, and experienced little to no risidule pain. I kept asking my angels to relax my body and heal me. And when I do my automatic writing, much of my pain disappears, too.

I don’t know why I live a life with physical pain, anymore than I know why I experienced a difficult childhood or why I have Aspergers. I do know that all my challenges have made me a stronger and a more loving person. I know that I am capable of extreme empathy, because in this short life I have experienced so very much. And perhaps that is my gift: how my suffering enables me to love more fully and to connect more freely.

I cannot imagine my life any different. If one day my pain goes away, I am sure I will be delighted; but in the meanwhile, I am so happy that I know how to choose contentment over victimhood. And I am thankful that I recognize my pain is not who I am.

I wrote this post because there are other people who experience pain syndromes, and I want them to know I understand. And because I wanted to share a little bit more about my journey.

I think we all have special gifts to share with the world, and that if we can turn our trials into compassion for self and others, then we have already accomplished so very much.

In closing, I believe there is a reason for my life. I believe we have each been called to service and each given the tools necessary to answer our calling. For me, one tool in particular has been the continual humbling of spirit. I thank my pain for reminding me of my fragility and humaness, and for bringing me that much closer to reliance on something higher than self.

Diagnosed with:
Fibromyalgia
Chronic Fatigue
IBS
Endometriosis
Fibroids
Hyper-joint mobility syndrome
Lyme Disease (The test has an over 60% fail rate. The test results were questionnable; the doctor based this diagnosis on ongoing symptoms. I tend to think I don’t have this, though, and my pain is a result of the above conditions.)

Self-Diagnosed:
PMDD

Perhaps I have?
Classic Ehlers-Danlos syndrome (I haven’t been diagnosed with this, but it is so similar to hyper-joint mobilitiy syndrome; though I do have most of the symptoms)

356: Teaching the Teachers

| Aspergers Girls

I have been praying and asking for guidance regarding my future vocation and avenue of service, and the answers very much entered through slipstream full force this early morn.

At first, I was given the message (through my little knowing voice) that my husband would over-sleep his five a.m. wakeup call (alarm) and be late for work, unless I was awake to wake him up. Hmmm. That was troubling, as with my own dyspraxia/dyslexia, I had no idea how to reset my own alarm in order to wake him up, as he was sleeping in my son’s bedroom. (Long story why we were in separate rooms, but basically boils down to dinosaur snoring, if there was such a thing.) I could have retrieved my phone from upstairs I suppose, but I wasn’t awake enough to think of that. So I tossed and turned in a type of vision-state for a bit over an hour. Knowing enough I had to stay partially awake.

I was certain time stood still, as the leap between the time of four to five seemed to take the stretch of a day. During this time I was shown image upon image.

I revisited my time at the university, the place I chose to leave a little over a year ago, based on the way I was discriminated against for mentioning I had Aspergers Syndrome. I revisited it all, the whole of it—emotions, illness brought on by the stress, the mourning process, the wanting to prove my side of the event and expose the injustice, the sob-filled-telling to my therapist and her concurring I had been the victim of appalling behavior on said professor’s part, the anger stage of wanting to sue, the humiliation part of being set up in a mediation that wasn’t a mediation…and on and on.

How dare they, is what I thought, and I spun and circled in mind about pulling up the evidence—the emails from the witness who at the time of mediation froze up and remembered nothing, the notes from my therapist, even my therapist’s comment that this man had a reputation, hearsay or not, she knew of him well, the notes from the Dean’s meeting, the Dean of the department warning me not to ever bring up the word Aspergers in professional setting: “It’s not the appropriate place.”

I dug up so much old stuff: the confusion of being accepted into a Masters in Counseling program that didn’t even want to know who I was, who didn’t even want to know how my mind functioned. The confusion of being told I was creating my condition (Aspergers) and announcing to the world my son’s brain (who has Aspergers) is broken. The confusion of receiving lower marks on my papers after the mediation took place. The confusion of one professor offering unsolicited advice about me, once she found out I had Aspergers. The meltdown of my self-esteem, self-worth, and self-love that dissipated much like the wicked witch in The Wizard of Oz into a molten black. Why was it I who had to undergo such pain?

I thought back to the high marks I received as an educator. Always the highest marks. How my college classes previously, through undergraduate work to my Master’s in Education program had been a place of safety. How the professors appreciated my input and intelligence. At times how I became the exemplary “one” or the teacher’s pet. I remembered how with every endeavor I’d ever set out to do, I had excelled, even exceeded others’ expectation. And here, in the span of little over a semester, with the hearing of the word Aspergers, the others, a set whom were supposed to be my mentors, painted me with their own muted greys into something I was not and am not.

Suddenly, all of me became what they saw. Suddenly, I had lost all I had built. With one swipe they knocked the self out of me.

And as I processed through the events and corresponding pain, I began to wonder what to do with this surfacing anger. A damaging letter came to mind: “Look at what they did to me.” And I let those thoughts come readily and steadily and tear into me one by one. I bled in my bed. I bled and bled, the tears of my soul seeking vengeance.

And then, with the passing of deep ache and hollowed out chance, I let the feeling go. I let the anger purge through me and erase the fear. I let the anger dance and take flight. I let the scenarios play out. I let the other me who wished to be free escape. And this shadow side, she wept more. Her screams the own echoes of demise and lack of rescue. For she had tried so very hard at this University, where her dream of being a therapist was going to come true. She read all of the “extra” books, did all of the “extra” credit, spent countless hours, setting aside her dyslexia and dyspraxia, in hopes of impressing her professors, and hopes they would see her, see her brilliance, see her mind, see the gift she so readily wanted to share with the world. This part of her less-ego than giving spirit. See me, see me, see me! That is all she wanted. That was all she ever wanted.

In receiving her diagnosis the world made sense to her finally. She wanted to celebrate. Four-decades of not knowing made sense in a split-second. Four-decades of intense suffering realized and ended with the blink of an eye. In the mention of a word. This gem of Aspergers had saved her, had brought her home onto herself.

And in knowing this, she wanted to share. She had to share. She had to let others know. “Look, I found the key. Look!”…….

And instead I was made to think I was broken. I was wrong. I was made to be pushed back into a hole and remain uncovered. Not one professor wanted to hear, wanted to know about Aspergers. Even in the beginning of the second-semester of my group-therapy class I was warned, we as class warned: Don’t share the diagnosis stuff here.

Really? I was so beside myself, how could I share in group therapy without sharing the essential element of who I thought myself to be and how I thought myself to function.

Could they not see I wasn’t broken? Could they not see that Aspergers was not a disease, not an illness, not anything beyond the way I saw the world?

And the questions came bubbling: Why would I be hushed, unless indeed I was entirely flawed? Why would I be told I created this, unless I was entirely unaware of my own self?

So much damage done, in so little time.

Today, before the sun rose, I wept in bed, the whole of my body sweating and seeping out the poison. And I turned and turned, half in sleep and half in agony. Lessons, lessons, and more lessons.

And then the peace finally came. Right when it was time to awaken my husband, I was awoken.

The clarity seeped through me. I saw that I had detoxed the emotions. I finally released the torturous anguish. I finally set my self free and their falsehood to rest.

I awoke fully with a knowing. I knew what I was supposed to do.

I was to teach others, teach the teachers of the teachers, the educators of future counselors and psychologist, the parents, the caretakers, the women of tender-heart and soul like me. Teach them that Aspergers is nothing to be ashamed of and nothing to hide away. Teach the beauty of who we are to erase the darkness that once pushed me into hiding.

352: Here Comes the Mud

| Aspergers Girls

Last night I dreamt two boys, my son and a friend’s son, had painted my stairs with clay-colored shit. On close examination, it wasn’t shit at all, but mud they’d dug out of the water-creek area centered at the heart of our house, the outside elements inside, below the stairs. There were shovels there; they’d been digging for water in fun, until they were scolded by my friend, the one boy’s mother, for spreading shit inside the house. She had climbed down and brought up a clump in her hand, smelled it and insisted it was crap. I, then, knowing this to be false, proceeded to the site of the wet muddy bank and scooped up my own lump. I held it to my face, with only a touch of doubt, and inhaled deeply. It was dirt. I was certain. Wet dirt. “It’s not shit,” I insisted, a bit irritated, but thankful feces were not smeared across my carpeted steps; but my friend, the son’s mother, she insisted it was shit. And that was that. The last words spoken: Shit.

I think my angels are telling me something. It’s actually quite clear. Where I am at right now, currently, feels like shit, looks like shit, and even, quite frankly, when I first wake up, tastes like shit; but a part of me, the analytical and hope-filled part, she knows it is just all mud, and like all mud, this too will be swept up in the rain, cleansed and removed.

This is all coming about, this feeling of “shit” because of my hormones and that “time of the month,” aka
“Hell.”

I have gained weight. The weight gain could be the result of the reduction of thyroid pill, or my binge eating from PMS, or reduced walking…… or just the cold winter season. Regardless, bodily changes freak me out. Really do, to the point I don’t want to wear nice clothes and I don’t want to leave the house.

Unless of course I deem the changes positive.

And it makes no difference how often someone reassures me I am still pretty or enough, or beautiful on the inside. It just doesn’t. I get comfortable when I weigh less. Not super skinny, just enough skinny so the fat doesn’t disgust me.

Now, other people, like my friends, if they gain a little weight, I don’t care! It’s so unfair. I really don’t care if they are ten pounds heavier or one hundred, as long as they are healthy and happy. They are lovely no matter what. (sidebar: In all honesty, I have to say with boyfriends in the past and in considering my husband’s weight gain or weight loss, I can be bothered, because I see that person daily and….clearing throat….naked.) And I mean that. Some people even look better with a little more weight. Especially as the female face ages and grows more gaunt. But for me I have a double-standard. I must be a certain weight or I am deemed “not enough.”

Truth be told, last I prayed, I wished to go head-to-head with my bodily issues and with my hang ups on appearance. To face the demons. So here it is! The shit, at least appearance of shit, being dug up and hitting not only the fan, but the stairs leading to advancement and a higher place…hmmmmmm Tricky angels I have.

I must be careful what I pray for. I must. I must!.

When I gain weight, I wig. I spazzzzz. I obsess. My “fatness” becomes my fixation.

For me, it feels like my weight is one of the few things in this world I can find familiarity in; something that doesn’t shift and vary with each ticking second.

I hate being me right now.. I would pay someone to take me ahead five years, preferably un-aged, to menopause. Don’t age my children though; I don’t want to miss out. I just can’t stand these spikes in emotions.

I blame some of this on the changes of hormones since I stopped the natural pig hormone for thyroid issues. The pig hormone, I concluded after much research, was causing peaks of progesterone and then rapid drops which lead to the muscles in my tongue responding while I slept, which led to waking up with sore throats, which led to a head cold every month for two days before my period. And cystic acne (which I never had before) caused by the imbalance of other hormones.

Even though I quoted 50 other people whom had cited cystic acne after starting thyroid meds, my natural path didn’t believe me; however, my gynecologist did. And I have been doing this ping-pong battle of rights and wrongs in my head for seven weeks. “Stop the thyroid pill for six months, and then get retested” ……words served by gynecologist. “Cut the pill in half”… words served by natural path doctor.
I stopped. All symptoms seized. Weight came on quicker.

Well I have grown not to trust my natural path doctor. Even though I adore her and have trusted her for the last two years.

She had me at thyroid levels well enough left alone and then upped the dose in August to decrease my levels more. And as a result I was in a state of hyper-thyroid behavior for months, e.g., hair falling out, heart beating fast, rapid thoughts, increased OCD and need to process, and not gaining weight, no matter what I ate.

Now, my body is confused, as I’ve stopped, or not so much confused, but readjusting, and the equilibrium they are finding is not to my liking. I hate feeling tightness around my waist. And I hate disliking my image, an image I already was uncomfortable with, but slowly getting used to before I began to change…again.

I do not like the uncertainty of the world. I can’t deal with it at times. I can’t deal with anything right now: no noise, no decisions, no nothing; and this is likely why I have been housebound for three days, entirely on the couch or at my dining room table, fixated on organizing my blog and talking to others, fixating on escaping who I am.

I don’t get it, and I don’t get me; and I don’t like how hormones happenings can change ME. I dislike health issues; they are my major tipping point, my trigger, a fear-based swampland. I don’t do well with anything related to sickness. But even in the fowl, muddy-mood I am in, I do recognize my fear of health issues has in the last two months decreased ten-fold…a miracle in itself.

Which leads me to my angels. I can feel them still, sitting back and watching me go through this mucky mud. I know they are there. I know this is necessary for whatever reason. But it doesn’t stop me from wanting to turn them into visible, little fairies that I can stomp on for pleasure.

They get that. They do. And I think I can hear them laughing at the joke, and even giggling in relief they don’t have to be human. But I do. And it sucks. It stinks like shit even though I know it “ain’t.” And that’s the hell of it: Knowing it’s passing mud, but feeling and believing it’s shit that sticks.

I don’t know what to do except to write it out, to pound it out, and hope that someone out there is touched and healed, or at least relieved in some way. Perhaps in the knowing that as hard as I try, as much as I do, as strong as my faith is, that sometimes through it all, all I see is shit.

351: My Next Step

| Aspergers Girls

I have been spending the past few days going through my first 70 posts. You can find the links under Helpful Pages to the left, in the sidebar menu. I will be doing the same for all of the posts. About 300 left to sort through.

I am organizing my writings for several reasons:

1) To view where I was in comparison to where I am now.
2) To sort the posts in a fashion that will be user-friendly for readers.
3) To reflect upon what my next step will be.

This process of sorting is similar to stacking toy blocks or sorting toy cars. The process allows me to forget my own mind for a bit and to momentarily escape.

I find myself at a fork in the road. I have been in contact with the editor of the journal I write for; she is a wonderful person currently assisting me as I process through my next step regarding creating a book. I would like to collect these works into hardcopy book form. Something people can hold in their hands. And something I can hold in mine.

I made the committment to self to write 365 posts, because that number symbolizes a year and a full-circle journey. That end-date is swiftly approaching. In seeing this endpoint, I recognize an ending represents a beginning as well. Not a new start, as new starts are available every moment, but a new beginning: a leaping point that will take me in a new direction.

I have some anxiety associated with newness and the unknown. A part of me would like to be fearless and entirely optimistic about the future, but a part of me recognizes this fear is part of my journey at the moment.

I don’t know what to do, or where to go, in regards to my writing and my vocation. I do know I want to serve and I serve well through words and creating safe places. I do know I need to consider my physical challenges and my own Aspergers, as I am quickly depleted if I am out of the house too much or around large crowds.

I have worries. I worry that if I attempt to put my works into a book I shall become ego-attached. I worry about who will want to read what I have written and wonder if this endeavor to make a book all be for naught. I don’t know if I should seek out an agent, publisher, or self-publish. I wonder what will happen when I open this new door. I wonder about rejection and allowing myself to feel wounded and “not enough.”

This blog has become a very safe place for me. A haven. I risk, but I don’t usually feel fear associated with risking. I feel at home. Like a sibling free to be herself amongst her brothers and sisters. I feel sheltered. I thank you for this.

Outside of this blog, I felt unsafe.

I am trying to visualize my next place. I am wanting answers. I am wanting to see the future. So much is a blur. I see myself utilizing my masters degree in education and speaking to others. But I don’t know about what. My heart is at home when I am connecting to my poetry and spiritual writings. I feel the healing there. But at the same time I know my work with Aspergers is vital, at least at this moment.

I have a lot of works here, a couple hundred pages of auto-biographical stories alone. There are also many poems, automatic writing and precognitive spiritual experiences, silly life experiences, examples of the inner-workings of my mind, and more.

I am not sure where to begin. I am not sure how to sort and organize this. I am uncertain what is important and what is not. And the anxiousness that comes with wanting to piece together a puzzle, and the need to dissect and sort, is here.

I want to magically awaken and have someone come and say: Here, here is the answer. Or better yet: I will do it for you!

I want to be surrounded in compassionate support, deep understanding, and unconditional love.

I want my angels to show me the exact steps and the exact outcome.

Here are some questions I need answers to:

1) What do you think would be beneficial for me to do with these works?

2) What works on this blog are you most drawn to?

3) What works on this blog have helped you the most and in what way?

4) Do you have a viewpoint about self-publishing verses searching for a literary agent?

5) Where do you see these works having an effect? (e.g., college university, females with aspergers)

6) What are your own thoughts or hunches about this blog?

Thank you very much for listening. I welcome all ideas and thoughts with love.

In Love and Light,

Sam

350: Crap! I have this. That’s all she wrote.

| Aspergers Girls

Crap! I have this (too). That’s all she wrote.

PMDD

http://en.wikipedia.org/wiki/Premenstrual_dysphoric_disorder

http://www.mayoclinic.com/health/pmdd/AN01372

Here is a fellow blogger with Aspergers who writes about PMDD. http://worldwecreate.blogspot.ca/2013/03/how-to-deal-with-pmdd-part-2.html

And after lots of processing…she wrote a bit more!
Okay…. are studies being done about this COMT enzyme??? It affects emotions and executive functioning?? AND is thought to be possible cause of PMDD!!!

http://en.wikipedia.org/wiki/Catechol-O-methyl_transferase

Could not feasibly the symptoms of PMDD be used as an additional indicator of Aspergers in Women, since there is the strong connection with the variant enzyme of COMT in people with autism? Yes, indeed, I believe so. I love my brain.