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.

Wednesday, May 18, 2011


This week two EDSers lost the fight to Ehlers-Danlos Syndrome.  For those of you who are not familiar with EDS, V-EDS (the Vascular type) is the deadly type of EDS.  Kim Jessup and Zac Kleiner were lost because of this horrible illness.  I did not know either of them, but when I can I will make a donation to an EDS charity in honor of them.  Please make a donation in their honor to a charity that is doing research to cure EDS. Ehlers-Danlos Syndrome Network CARES, Inc is doing their second research project to find a way to cure V-EDS.  I want to thank my readers in advance for any donations they are able to make to the Ehlers-Danlos Syndrome Network CARES, Inc.

I have the cardiologist appointment this Friday.  We should have enough gas money to get there if it doesn't rain and my BIL gets to mow some lawns.  If it rains then he won't get to mow lawns and I won't be able to make it to my cardiologist appointment.  I can't open my jewelery making kit because we may need to return it to have the gas money to get there.  We are lucky, though, that I have it, it is unopened, and if push comes to shove we can take it back.  Each day we eek by financially.  We are getting a little better, though, I think.  I made $12 on Sponsored Tweets and transferred it to my PayPal.  There is a $2 fee if I transfer it before I reach $50.  So we had $10, which got cat litter and supper.  Thank goodness for Sponsored Tweets!  I've made $83.64 (cash, to my PayPal) since I started ST.

By the way, if you are interested in Sponsored Tweets and are wondering what it is, it's a website that you write advertisement tweets on and then ST tweets it out.  For every click someone makes, you get paid a preset amount of money. If you are interested, please use my link, http://spn.tw/r2rph.

This is a screenshot of my Sponsored Tweets page that shows how much I've earned


Today I've been in and out of bed.  It's flare day #2, which was not as bad as yesterday.  Yesterday I got to a 10/10 on the pain scale and I blacked out, coming in and out of consciousness.  Days like that are really, really hard.  My home health aide had come over yesterday and together we cleaned the living room.  I wasn't supposed to do any of it on my own, but if I 1) wanted it done and 2) wanted it done competently I had to do it. After she left my pain levels when from a 7 to a 10 in a matter of minutes.  Today I've spent half the day at the desk and half the day in bed.  As soon as I hit post I'm turning off the computer and going back to bed.  I'm so weak and fatigued, plus in so much pain, that my legs shake when I walk.  I have to use a cane indoors, which is something I usually don't have to do.  Well, I'm going to bed now.  

Friday, May 13, 2011

Nightmares and neck pain

I had a dream last night I was at my rheumatologist's office crying.  I was in intense pain and begging my doctor to help me.  I asked her to do anything to stop the pain.  I told her she could knock me out, crank my neck, cut me open, I didn't care, just make the pain stop.  She said she couldn't do anything.  I begged her to send me to a doctor who could.  I asked her if I needed to see a doctor about possible Chiari or if I have a neck problem [that my physical therapist couldn't feel].  I told her to send me anywhere, do anything, please make the pain stop.  She just kept repeating over and over that she couldn't do anything.


Nah, the doctor in my dream wasn't a zombie, but I thought this picture was more awesome than regular  doctor clipart :-)
It's amazing how sometimes our dreams parallel our lives.  Obviously during that dream my neck was in severe pain.  I have been going to bed between 8:00 pm and 10:00 pm most nights because I can't hold my head up any longer, my neck just hurts too darn bad.  I used to go to bed between midnight and 2:00 am, unless DH had a seizure, then I go to bed and read next to him while he sleeps afterwards.  This intense neck pain reappeared a week to ten days ago.  My physical therapist, over many appointments, had reduced the number of myofascial trigger points in my neck and thus a lot of neck pain.  I've been out of physical therapy for only two weeks, so it didn't take long for the neck pain to come back.  Each day it's been getting a little worse, and today, because it's a rainy day, severe neck pain started after being up only a few hours.  I wonder, is the neck pain stemming from fibromyalgia, Ehlers-Danlos, or possible Chiari?  I think it matters on what the pain is from.  If it's fibro pain then, okay, I have to just deal with it.  If it's EDS pain, do I have something out of place? If it's possible Chiari, well...I'd like to know.  Would myofascial trigger points develop from Chiari symptoms?  I know they do on EDS from the way our loose joints fit, and don't fit, together.  Myofascial trigger points are also a common with fibromyalgia.  So it does matter what causes the severe neck pain, a lot.

Fresh ginger root tea my DH made me

This week DH and I have had no appointments to go to.  It's been great not going to so many doctor visits.  DH brought up a good point on something.  We are both disabled and cannot work full-time, so why are we expected to be able to go to doctor visits almost daily?  It's just a rhetorical question, I don't need an answer.  I know that we have to go to doctors, I just wish I didn't have to, especially so often.  I'm envious of the women who do the type of work I'd like to do, but not insanely jealous.  I have a purpose, and right now that is to be a wife of my wonderful, awesome DH, an advocate for myself, a kitty mommy, an advocate for awareness for fibromyalgia, epilepsy, and Ehlers-Danlos Syndrome, a caretaker to my DH [and he is my caretaker], a friend, a sister-in-law, a pen pal, as well as having a spiritual purpose.  My biological clock and I are hoping DH and I became a Mommy and Daddy soon, but we aren't trying for that (yet!).  We have to wait until my health is under control and our finances are better.  I doubt we'd be able to adopt (because we are both on disability) and we both are in fuzzy areas on whether we are even going to be able to make a baby, but I know in my hear and soul that we will be a Mommy and Daddy.   I've known that since the second week DH and I were together.  We haven't spent a night apart since our first kiss, but that's another story for another time.  I'd like to tell you the story of us first meeting sometime.  

I think I've mentioned that I had to miss my cardiology appointment.  It's a long story, but the important thing is that I was genuinely trying to make it to the appointment and had no intention of canceling.  I rescheduled for the beginning of next month when we will have some money but I decided I can't keep putting off checking out about Chiari forever.  I did have a discussion with DH about it and we argued, him worried and seemingly angry at the time, and me in tears and feeling unheard.  We worked things out, though, but I'm not sure where we really stand on this.  He said he was never angry, but he's so worried about my many medical problems and is so anxious because he can't "fix" any of them.  I understand that because that is the way I feel about his epilepsy.  I'm not sure what the next step is.  I had to see my quack neuro for meds for my epilepsy, as did DH, but he told me not to mention Chiari to him...well, because he's a quack!  I doubt he even knows what Chiari is.  When I told him that I had EDS he didn't seem to believe me and wanted me to prove it to him.  It hurts my joints and does damage to them to keep "proving it" to doctors.  He doesn't even no anything about EDS and he'd never heard of it before, but still wanted me to "perform circus tricks."

I'm only up now temporarily, I've been in bed part of the day with ice on my neck, unable to move without severe neck pain.  I finally fell asleep after reading for awhile, but I don't know how long I slept.  It felt like about 20 minutes, but I could be wrong.  DH is making me some more ginger tea to drink.  I am out of Aspercreme and generic Bio Freeze so I was so thankful when I found an envelope of a sample of real Biofreeze for myself.  It was the first time I'd used the real thing, instead of the generic, though they cost the same.  (Biofreeze brand isn't at Wal-Mart.)  It pays off spending time ordering free samples.  The Biofreeze helped some, but not too much.  Unfortunately I had to wait for quite awhile after putting it on until I could put my ice packs on my neck.  I had a heating blanket on every thing else to help relax my muscles which are really stiff and hurt from the rain.  My joints hurt, too, but not that much worse than normal.  The neck pain is extremely painful, though.  Did I mention that already? 

Thursday, May 5, 2011

Jumping a hurdle tomorrow & a week of increased pain

I woke up in a lot of pain yesterday and today.  My pain is getting worse everyday and I've only been out of physical therapy a week.  I hurt so bad I can barely move, so I can't do my physical therapy exercises I'm used to doing.  This makes my pain worse and increases my weakness.  To top it off this evening I had a seizure last night and my shoulders certainly feel like I subluxed them both during the seizure.  I also hurt my wrists and my elbows during the seizure, especially my left wrist.

I see my cardiologist Friday for my follow up.  She will give me the results, that I'm sure are normal, of my echocardiogram and my Tilt Table Test (TTT).  I was supposed to have my follow up a long time ago but because of pain, money problems, and car problems, I haven't been able to make the trip.  I will finally be making it there and getting the results of my test.

I have these weird nail problems lately, and I don't know if they can be related to something related to the cardiology system.  My fingernails have turned into fan shapes and my nails curve down once they reach the white part.  I don't know what the deal is.

My weird fingernails

After I see my cardiologist I want to sit down and have a talk with DH about looking for a neurologist with regards to possible Chiari.  I don't know what DH will be thinking in his head and I'm a little worried.  Will he be scared?  Maybe, I hope not, but probably.  If I am honest, then I'd have to say I'm scared, too.  Will he be dismissive?  Never.  DH never dismisses my feelings.  I want to be able to explain it to him, my symptoms and so forth, and then we can make a decision from there on what we want to do next.  All that has to come after the cardiologist, though.  One thing at a time, one thing at a time.

I've been drinking fresh ginger tea all day yesterday and it helps with the pain.  I am going to ask DH to make me some more soon.  Right now I wish I was unconscious, even though I still feel pain in my sleep.  I really hope this increased pain is over by the time I leave Friday for my cardiologist.  

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