Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ 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) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Friday, May 20, 2011

On frustration, zebras, and bullies

I'm a bit frustrated.  I had to cancel my counselor's appointment on Wednesday because I couldn't get out of the house or far from my bed from an intense flare.  Then I had to cancel my cardiologist's appointment today because I'm still suffering too much pain and fatigue today plus we don't have gas money...plus we are having car problems!  I tried to reschedule a little past 9 am when I called and canceled but no one answered the desk and I had to leave a message.  Hopefully they call back soon and I can reschedule, otherwise I'll call. them back this later this afternoon.  When they hear the message they may not have time to call me back at that moment then forget.  I'm not leaving this up to chance, I want to see this doctor for my Tilt Table Test (TTT) and echocardiogram results as well as discuss how often I need to get an echo done.  Most of what I've seen says once a year.  I guess I should get some literature from trusted sources for her, because she may not know the answer to how often and I don't want anything else concerning my health to be a shot in the dark.

Like I said, we are also having car problems.  DH said something about the car dying when it idles. It's low on gas but not empty.  We took back (or DH and BIL took back) my jewelery making kit, and a couple of craft supplies I bought.  DH and I decided it was for the best.  I'm supposed to be able to get the money back and buy it again, but we'll see if that happens.  They got $14 from it and with that bought the little bit of gas we have in the tank now,  a bottle of oil for my car, and something else, I forget what.  We got money back for taxes (actually a rent rebate) from the state of Missouri.  I spent $200 on clothes because I wanted some long dresses and skirts and I don't have any shirts that aren't sweatshirts, T-shirts that don't fit, and three tank tops (two of them are the same).  Well, I returned all of it, because it didn't fit.  DH promised I could go to Kmart and spend at least some of the money on new clothes, but we had to use the $200 for bills.  I know it was irresponsible of me to buy $200 worth of clothes, though I would have liked a couple of nice shirts and a maxi dress or two.  I know the likelihood of me getting new clothes is about as likely as...well, it isn't likely.  Any money we get needs to go to bills.  We have so many bills we are swimming in them, and they go way above our heads.

I got a letter in the mail from my case worker today about missing a phone appointment.  How did I miss it when she wasn't at her desk or even in the office when I called?  I just called and left a voicemail, but the the receptionist wouldn't give the extension that the letter told me to call for some insane reason.  Instead she gave me some guy's extension, after making a strange noise clucking with her tongue.  So I left a message for the DFS guy, but I kept getting tongue tied and a little panicky; I'm not sure my message was understandable.  I have to have this phone interview done by the last day of this month and they said they only make one return phone call.  We have no voice mail or answering machine, so it's highly likely I will miss the call.  Then I will call them and wait another two days for the return phone call.  For those of you who haven't dealt with DFS before, they usually: don't call back at all, act rude, act like they could be spending their time better than with a worthless poor and disabled person, don't give a damn, and most importantly, the case workers never, ever, ever answer the phone.

I also just called and made a new appointment with my cardiologist for the beginning of next month, when we will have our disability money in and hopefully have the car figured out.  Hopefully.  I also called and made an appointment with my rheumy.  I was still going to call to make appointments with my counselor and find out when my appointment with my pdoc is.  I didn't write my pdoc appointment on the calendar, which is unusual,  so I need to find out when it is.  I'm pretty sure I haven't missed it.  The phone went dead, though, before I could call my counselor's office or my pdoc's office.

It's been storming all morning and Niki has been scared.  I didn't know that she is scared of thunderstorms, but she was scared of this one.  Sterling usually is scared.  Right now she's on Mommy's desk, sleeping on top of my books.  She's such a sweetie.  I love Niki and Sterling so much, they are our kids.

Guess what?  I've been studying Italian!  The first word I learned was Salve! which means Hello!  Surprisingly, the Italian word for zebra is zebra!  It's pronounced differently, though.


Zebra in Italian






***Trigger below for anyone sensitive about suicide***
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I think I will enjoy learning Italian more than Spanish because I have a lot of bad memories associated with my Spanish class in High School.  I was beaten by the star wrestler/star football player and made fun of until, because of all the bullying from so many bullies in High School, I attempted suicide.  I didn't have my stomach pumped either.  I just didn't take enough Tylenol/Advil/Pamprin to die, thankfully.  I got sick, but I wasn't going to go to the ER because I really wanted to die and I thought that if I did it at school by the time they figured out what was going on I'd be dead.  I really wanted to die at that time, though.  I spent every day trying to gather the courage to fall over the rail onto the first floor from the second, but I was scared I'd only damage myself and not die.  I tried daily to get the nerve to jump out of the third story window but I didn't die.  I tried huffing for almost a year, for the express purpose of dying, as I'd seen on the evening news that a bunch of teenagers did it and died.  During a skit that was video taped for Spanish class I was pushed down the stairs head first, but I pivoted on my foot (something I couldn't do now) and fell backwards and hit my head on the cement floor.  The whole thing was on video tape but we only went to one lawyer who would not sue because we were both female, white, and Catholic.  I know that doesn't make sense, but that's all the lawyer said after he saw the video, and my parents never went to another lawyer.  I can't remember much of what went on after the head/neck injury, I remember incredible pain in my neck and head and I'm pretty sure I had a concussion after hitting the floor that hard.  I remember waking up screaming the next day because my neck has spasmed so incredibly bad.  Up until that point it was the worst pain of my life.  I only watched the video once and I almost threw up when I heard the loud smack! sound of my head on concrete.  I told the Spanish teacher who not only didn't do anything, but because kids made fun of me in my neck brace the principal told me I was too much of a disturbance and should go home for the rest of the year.  We had a week left and I was excused from finals, but in some classes I had been counting on my finals to raise my grade.  When I was in the neck brace people made lewd jokes and remarks about me giving so much oral sex I ended up in a neck brace.  When someone said something like that it made me cry.  I was so humiliated.  How could someone say that?  I was in so much pain and I was having to deal with three times as much verbal abuse.  Thankfully, no one hit me while I was in a neck brace.  Then people (bullies and their friends) would throw food at me during lunch, like usual, but in a neck brace I couldn't see where it was coming from.  I don't know why it mattered anyway, no matter who I went to the food throwing never stopped, it continued through my senior year.  I hated lunch and they wouldn't let me leave and go to the library or skip lunch and go the the library.  I could go on and on about bullies, I imagine we could write a book about being bullied between DH, BIL, and me.  I just wanted to show some of the reasons I hated Spanish class and why I may have a mental block on learning Spanish.  So, I am learning Italian.  I like it so far!  I made up flashcards to study, too.

I got asked back to my High School Reunion on Facebook and Myspace and I told them I told want to see anyone in High School because they made my life hell with their bullying.  I told them I have no desire to see them every again.  They got all pissy and said they didn't even remember me.  That's the thing, though.  Bullies bully so many people they see as lesser than them that they don't even remember who they bullied.  The person who was bullied, though, remembers forever.

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