My Journey With:

Hypermobile Ehlers-Danlos Syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Tuesday, January 25, 2011

I know, let's pick on the weakest ones!

Today is an incredibly stressful day.  Today Discover credit card is suing me.  I'm in too much pain to make it to court, plus they don't have wheelchairs at the courthouse that I know of.  If I tried to leave the house in this level of pain I'd be in a flare instantly.  It would be redundant of me to specify it would be "incredibly painful" flare, because all flares are "incredibly painful" flares.  Since it is a civil trial I actually don't have to show up.  It isn't like skipping out on criminal court that can land you in jail.  Basically I'll be told by the court to pay.  Why Discover card decided to go after someone on disability I'll never know.  I had a platinum card and 10 years of on-time payments before one year ago when finances started getting really rough.  Since then I've written letters, called them, and taken their calls.  More often than not the Discover representatives were so mean by the end of the conversation I was in tears.  One man got on to me for paying my electric bill before my Discover card bill.  I would also like to buy food, but we don't always have that luxury either.  I bet the Discover lawyer has no idea what it's like to go to bed hungry.  After awhile you get used to not eating, them BAM, it hits at once and you feel hungry and weak and crappy all over.  After that feeling subsides you feel back like yourself again.  I wonder how he looked himself  in the mirror that night when he brushed his teeth?  Maybe not everyone brushes their teeth before bed.  Hmmm...that is something to think about anyway.  <---trying to inject some comic relief into what is for me a very stressful situation

I'm in a lot of pain today, which I already mentioned.  I'm sitting on the bed typing and Sterling is stretched out in the sunlight on the foot of the bed asleep.  It really is cute.  Right now I'm reading five books.  I'm almost done with The Yoni: Sacred Symbol of Female Creative Power by Rufus C. Camphausen.  I'm halfway through Dracula by Bram Stoker and almost halfway through The Wiccan Mysteries: Ancient Origins & Teachings by Raven Grimassi.  I feel like I've been reading PCOS: How to Regain Energy, Vitality and Hormone Balance by Elizabeth Lee Vliet, MD forever but I'm only halfway through.  It's a bit of a boring book, but I think that PCOS and the hypothryroid are keeping me from losing weight at the rate I should be so I am trying to learn about them.  I have a book coming in from paperbackswap.com about PCOS and fertility.  The final book I'm reading is a lesbian romance by the name of Car Pool by Karin Kallmaker.
I am loving reading Dracula!

I really want to order these business cards and address labels from Vistaprint.  They are free and I only have to pay for shipping.  Pretty cool, huh? What with the stress going on and the pain I feel like crap.  I feel weak, and I hurt so bad.  I've been having to take breaks from the computer.  I wanted to make a nice present and mail it to my one of my bffs.  I met her through Facebook and she is a fellow EDSer.  Instead my hands hurt so bad I didn't get to make her a present, though I did get to make her a pretty card.  I feel bad that I couldn't make her anything for a present.  I really wanted to.

My brother-in-laws and the youngest's wife are still staying here.  I am afraid they will think I'm crazy or something with all my medical problems.  People generally don't understand.  For instance, when I iced my neck the other day BIL#1 asked if it was because I had whiplash at some time.  I told him no, I suspect Chiari or cranial instability, which can occur with Ehlers-Danlos.  Nah.  I told him about the time I really did hurt my neck, when I was bullied so bad Rosanna Sparks put me into a neck brace in high school.  I appreciate that both BIL#1 and BIL#2 are both considerate of my pain.  Speaking of pain...I'm gonna move the computer to the side in a minute and lay down.

Sunday, January 9, 2011

Struggling through shame and tears

***POSSIBLE TRIGGER TO SOME PEOPLE*****

















Why is it that in the face of all the good things that have been happening to us I still find myself struggling with the urge to self-injure (SI)?  SI causes a person to live in shame and fear that someone will discover what the scars on their body are really from.  I've told excuses ranging from car wreck to horse attack.  It doesn't take much sometimes for the urge to be strong again.  Sometimes it starts from seeing a box cutter or razer blade.  Sometimes when I'm very upset and start dissociating I'm not all the way "there" when I cut, and I do so to bring myself "back" to reality, so to speak.  This morning I was reading The Smithsonian magazine and it had an article in it about body marking.  The photographer the article was about was Ansal Adam's protege and the pictures he took.  One picture, the one that disturbed me, was a picture of a tribal man with scars obviously caused by a sharp razor of some sort to mark his face.  The scars kinda look like the big one on my left arm where I couldn't afford to go to the ER to get stitches.  It turned into a big scar.  The others did, too, but that one is the biggest, the mark of shame that adorns my body.  Why, I ask myself, do I feel the need to SI again?  I think it is more than the need to.  SI can become an addictive behavior and it's something I've struggled with since I was 14.  Those 15 years seem like a lifetime of excess, tears, restraint, blood, stitches, razors, self hatred, and most of all shame.  It scares me that I am thinking about SI this much again.  I think it has to do with other triggers as well.  I'm remembering more of Mr. D. and Church day camp the summer before second grade.  I keep seeing his face in my head.  My flashbacks from that and the trial with my parents are horrible.  To top it all off I seem to be having way more than the usual amount of flashbacks about both times I was raped.  Loud noises and being startled can send me into a flashback.  My daydreams take sudden dark turns.  I cry easy and often.  I smile when I am nervous.  I remember laughing the day my Grandma went into the nursing home six or seven years ago.  I was so afraid that people thought I was being a bitch.  I was trying so hard not to cry I keep getting this nervous laugh and my voice was high pitched while holding back tears.  The only time I could cry then is when I was hiding in the back room, away from everyone.  I seem to always be crying anymore or close to it.  I'm stressed with having six adults in the house and I'm tired of it.  I'm really, really, really tired of it.  Sometimes it is all so much.  Then with my health I don't know what is worth worrying about and what isn't.  Sometimes I am so scared.

Saturday, January 8, 2011

Good news echoes in a lonely heart

I'm no Martha Stewart but I can bake!
I have absolutely wonderful news!  I saw my rheumy yesterday, expecting more of the same lack of patience, education, and understanding.  I was so pleasantly surprised that I'm still smiling.  First of all when she asked if anything was new I told her about the small joints dislocating, large joints subluxing, and that I was practically housebound from pain and lack of mobility from my ankles not staying in place.  She listened this time.  Oh my God, she listened this time!  I told her that at this point I'd be happy being able to go to the library again, which I haven't got to do in a year.  I think she was surprised at how much the EDS affects my life.  I told her I do not want any narcotics and she agreed.  I asked her about going to a pain clinic but she said the ones around here just give narcotics and nerve blocks, neither of which would help me.  She looked at my completely flat feet and said she was writing me a prescription for orthodics.  Awesome!  Then she wrote me a script for physical therapy in the pool, occupational therapy including hand therapy with possible splinting of fingers and wrists, and possible ankle braces!  She also kept the MRG from the Ehlers-Danlos National Foundation and the printout on EDS from Mayo Clinic.  I am so excited!  I have all these plans like maybe after enough therapy I can walk with Jim in the park or make him a dinner he hasn't had before.  He always cooks and I'd like to be able to cook for him, too, sometimes.  I'm also an excellent baker.  :-)

St. Louis, Missouri, USA
I am no longer worried about the symptoms I have that I think/thought/whatever point to something neurological.  I don't want to know if anything is wrong so I operate on the basis that nothing is wrong, which settles nicely on my shoulders.  I think that all of those symptoms could very well be normal.  The only other options I don't like, so I pick this one.  :-)


PRIDE
I've also been having problems with feeling like I'm lost among others so different than me.  I self identify as a lesbian, who, for this lifetime, found her soul entwined with a man's.  I love my DH more than anything, and he isn't "less of a man" for having a lesbian partner.  It's just how things happened.  I have met very few people online in the LGBT community that accept me because I am with a man.  I do not like to be told my sexual orientation, because no one knows that but me.  I am not bisexual.  I am gay.  No one knows what goes on inside me, but me.  I want to be accepted and taken seriously on how I self-identify.  When I lived in the town I lived in before I met DH, I was around a few other gay people all the time.  Here I don't leave the house much and have to depend on the internet and snail mail pen pals for social interaction.  I don't really have any gay friends now, except for a few lesbian pen pals, but I don't hear from them more than once every one or two months.  So I feel lost in a field of slightly to majorly homophobic men in this household, except DH, who is very open minded.  I feel like I am lacking female companionship, especially LGBT friends.  I so very often feel alone sometimes.

Thursday, January 6, 2011

Enjoying the beginning of 2011

Today is only the 6th day of the New Year and my mind is still geared toward change.  I think about what changed to make me the person I am today and get me into the situations I am in today and I think about how I will change in the future.  Change also brings great fear and great excitement.  Change can cause positive and/or negative stressors, change is something that we know will always happen and always has happened.  Life will go one.  Change will continue always.  I'm lucky enough to be on this ride, trying to direct changes the way I want them to happen, but it rarely seems to happen that way.

The other night it was so quiet and perfect.  DH and I were in good moods.  The window was open and the kitties were both in the bedroom with us.  You couldn't hear any of our four houseguests.  We were both reading.  I was reading a cozy murder mystery and DH was reading a Xanth book.  It felt like when we first got together.  Even though we cuddle together reading all the time, the other night it felt extra special, like it did those first days of our relationship when everything was new.  I woke up the next morning still in the same mood, a peaceful, lazy, romantic, mood.  I very rarely wake in the same mood that I went to sleep in, the that night I did.  I snuggled deep into the covers, against the love of my life snoring away next to me.  I couldn't stop an ear to ear smile.  The window was still open from the night before.  It was chilly, but I was okay under the covers.  Niki walked over and curled up next to me.  Sterling curled up next to DH's feet.  It just felt so perfect.  I feel like we were given this moment, or at least I was, to continue to have the strength to go on through the pain and the stress.  Even now, as I write this, I have a goofy smile on my face and a song in my head.

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