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 Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Wednesday, December 21, 2011

Classes finally over!

I have now completed my first semester of grad school!  I am hoping for good grades.  I'm going part time, in one class I made a B-, which is the lowest grade you can get in grad school.  I don't know what grade I made in the other class yet.  I'm crossing my fingers for a good grade!

I'll be able to start blogging regularly again now that classes are over.  This last semester my blogs have really suffered, but I think next semester will be a bit easier now that I know what to expect.  So, you'll be hearing from me soon.  

Tuesday, October 25, 2011

The EDS Song

"The EDS Song" by Amy
sung to the tune of Kokomo by the Beach Boys
(sorry about the lack of rhyming...this is my first try at a song parody)

Surgeon, physician, ooh I wanna take ya 
Neurologist, Endocrinologist, come on pretty mama
Falling, tripping,
baby why don't we go,
to the hospital...

Off the emergency room
there's a place called x-ray
That's where you wanna go
to get away from it all

Joints dislocated in the sand,
tropical drink melting in your hand
We'll be falling in love
to the rhythm of a loud MRI,
Down in the ER

Reumatologist, Gastroenterologist, ooh I wanna take you to
Neurologist, Endocrinologist, come on pretty mama
Dislocating and subluxing,
baby why don't we go
Ooh I wanna take you down to the ER,
we'll get there fast
and then we'll take it slow
That's where we wanna go,
way down to the hospital.

Bendy, that EDS mystique...

We'll take lots of meds,
and we'll perfect our chemistry
By and by we'll defy
a little bit of gravity
my joints get into fights,
crutches and moonlit nights.
That I-just-took-my-meds look in your eye,
in pain with a dislocation,
Way down in the ER!
Reumatologist, Gastroenterologist, ooh I wanna take you to
Neurologist, Endocrinologist, come on pretty mama
Dislocating and subluxing,
baby why don't we go
Ooh I wanna take you down to the ER,
we'll get there fast
and then we'll take it slow
That's where we wanna go,
way down to the hospital.
Bendy, I wanna catch a glimpse...

Everybody knows a cool EDSer

Now if you wanna meet the most awesome people
Hang out with a zebra.
Reumatologist, Gastroenterologist, ooh I wanna take you to
Neurologist, Endocrinologist, come on pretty mama
Dislocating and subluxing,
baby why don't we go
Ooh I wanna take you down to the ER,
we'll get there fast
and then we'll take it slow
That's where we wanna go,
way down to the hospital.

Thursday, October 6, 2011

Short on spoons

I'm still having horrible problems staying awake some days.  I kept falling asleep every time I got up today so I kept going back to bed.  I'm still ready to nod off again.  It's 5:38 pm and I'm exhausted.  I woke up without many spoons today and the drowsiness is horrible.  My legs ache really bad, too.  Right now I'm considering going back to bed again.  I just don't have the spoons.  Anyone have any spoons I can borrow?

Spoons, spoons, and can I convert these into spoonie energy?

Sunday, September 25, 2011

Can't stay awake...don't they make horror movies with that plot?

My pain has been outrageous lately.  It's been almost two weeks of this.  I would only call two of the days actual flares, but the pain, god, the pain!  It has affected my classwork, but today I got everything done I needed to.  I've been falling asleep sitting up, falling asleep in the shower, etc.  I can't sleep at night and I can't stay awake during the day.  Jim even waved bleach under my nose today to wake me up because I absolutely had to finish my interview report.  I've missed quite a few assignments already from pain and brain fog that comes with pain.  When the smell of bleach didn't wake me, he rubbed menthol spray under my nose.  That didn't wake me either.  Then he practically fed me four Rockstars with a straw.  I also had two cups of coffee, a cup of tea, and a four Pepsi Maxes (diet Pepsi with lots and lots of caffeine).
Sugar-Free Rockstar

Now that I'm thinking about it, I'm glad I didn't have a heart attack from all of that caffeine!  He finally got me awake, though.  All that time I had been sitting in front of my computer asleep.  I guess it kinda scared me (when I was awake later) that I fell asleep in my shower chair twice while showering last week.  I just can't seem to stay awake.  I don't know why.  What was that? I think I was starting to fall asleep...zzzzzzz...

Pepsi Max

Thursday, September 15, 2011

Invisible Illness Week - things you may not know about Ehlers-Danlos Syndrome

Guess what? This week is Invisible Illness Week.  I have a few invisible illnesses.  I am covering bipolar at my blog Survivor.  I will be covering fibromyalgia at my fibro blogSmart Fibro Chick.  

2. I was diagnosed with it in the year: 2009 I was diagnosed with an “EDS or HMS.”  (HMS is Hypermobility Syndrome).   In 2011 I received my without-a-doubt EDS diagnosis from Dr. W (who just happens to be incredibly awesome!).

3. But I had symptoms since: birth

4. The biggest adjustment I’ve had to make is: Not being able to walk very good anymore.  A few years ago I was jogging or walking every day.  Forget hiking, I can’t even off-road in my walker. Lol Oh…and the shoes!  I miss wearing heels and platforms so bad.  Yeah, I always fell in them, and my weak, bendy ankles always made me trip and injure myself, but I loved the shoes!  Now I wear tennis shoes or crocs because they have a flat bottom and are easier to walk in. Booooring!

5. Most people assume: That EDS just affects the joints.  It doesn’t.   It affects every system in your body-all the types do.

6. The hardest part about mornings are: the pain and stiffness.  I’ve been up an hour and a half to two hours and my legs, backs, and arms are still really stiff and hurt bad.

7. My favorite medical TV show is: Scrubs.  I used to watch House until they did the two part episode with House in the mental hospital.  It gave me horrible flashbacks and I haven't watched House since.

8. A gadget I couldn’t live without is: My laptop.  It’s my connection to the outside world.  Right now our internet is down and I’m typing my blog in Word.  I can’t leave the house often from pain and immobility problems so without the internet I’m cut off from the world outside.  Also, I pen pal, it’s one of my favorite hobbies, and I type the letters on my laptop.  I don’t have the hand strength anymore to handwrite a letter.  I also take classes online.

9. The hardest part about nights are: The pain and the insomnia.  Even worse are the nightmares about pain.

10. Each day I take __ pills & vitamins. (No comments, please) 27

11. Regarding alternative treatments I: I meditate, drink herbal tea for relaxations, drink ginger tea for pain relief, take vitamins and a few select herbs (that reminds me, I’m out of ginkgo balboa), self-massage my legs, and sometimes hands when they let me (my feet are too painful for me to mess with), I’ve had a friend do Reiki for me, pet therapy (I heart my kitties!), and yoga (when I am able, which isn’t often).

12. If I had to choose between an invisible illness or visible I would choose: Invisible, as long as I get to get rid of my bipolar.

13. Regarding working and career: I went on disability in 2000.  I cannot work from my 
bipolarEDSC-PTSDepilepsy, and fibro.

14. People would be surprised to know:  How incredibly terrified I am so much of the time.  EDS scares the crap out of me.  I walk on a walker, and I’m only 30.  I can’t walk far on my walker, or for very long, either.  What does this mean for the rest of my life?  I’m planning on turning into a vampire (LOL!) or living to 110, whichever comes first.  Yeah, I know what you are thinking, I read too many vampire books. ;-p

15. The hardest thing to accept about my new reality has been: Not being about to walk very good or very far.  I bet I could deal with the constant pain better if it didn’t affect my mobility.

16. Something I never thought I could do with my illness that I did was: Go back to grad school.

17. The commercials about my illness: There aren’t any because EDS is a rare disease.

18. Something I really miss doing since I was diagnosed is: Jogging, walking, shopping, gardening (though I did have a small container garden this year!), wearing cute shoes, having less pain, picking up grocery bags, lifting the full pitcher of water without pain or subluxing my wrist, being able to move my head without pain, wearing a watch instead of wrist braces, being able to clean house all day, being able to go to the doctor in another town and not have to rest for two or three days afterwards from the trip.

19. It was really hard to have to give up:  A lot of my mobility.  Writing by hand.  Romantic walks with the hubby.

20. A new hobby I have taken up since my diagnosis is: 
Facebook.  I’ve met the most wonderful EDSers there that I have so much in common with, including Vanessa, Jennifer, Sam, and many more…  The same with Twitter.  I’ve met a lot of other EDSers on Twitter that have helped so much.  Thank the Goddess for Facebook and Twitter!

21. If I could have one day of feeling normal again I would:  Go hiking in my really cute boots.

22. My illness has taught me: Anyone may start needing ramps and handicapped entrances; even if you never thought it would ever apply to you.

23. Want to know a secret? I’m scared shitless.

24. But I love it when people: Open the door for me and my walker.  Have you ever tried to shuffle through a doorway on a walker while it closes on your bum?

25. My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day, and I'm thirsty anyway, so bring on the rain." ~JoDee Messina

26. When someone is diagnosed I’d like to tell them:  Get on Facebook!  The EDS community on FB is awesome and you’ll make friendship with people who know what you are going through, and you’ll learn things that you never would have learned otherwise.

27. Something that has surprised me about living with an illness is: A lot of people think I made up EDS.  I think I’m going to tattoo the address for EDNF to my forehead so they can look it up and see it’s real.

28. The nicest thing someone did for me when I wasn’t feeling well was: Other than DH…because he’d beat out anyone else…a little old man who was a door greeter in Wal-Mart helped me get a scooter when I came in.  When we were leaving, DH went out to get the car and put the groceries away.  The little old man helped me out of the scooter.  He told me that whatever was wrong he hopes that I get feeling better soon.  I told him that I have a degenerative genetic illness and he looked so genuinely sad that I almost cried.  Then he said something along the lines of “I hope things get easier for you.  God Bless.” 

29. I’m involved with 
Invisible Illness Week because: I want people to learn about EDS and I want people who have EDS to know they are never alone.

30. The fact that you read this list makes me feel: Happy!  Thank you for reading this post on EDS and Invisible Illness Awareness Week. 

Throughout the week I will be doing blogs on Ehlers-Danlos Syndrome for Invisible Illness Week.
So you don’t miss a single entry this Invisible Illness Awareness Week and if you haven’t already; I’d like to remind you to subscribe to my blog, through Google Friend Connect, Networked Blogs, RSS feed, or through email.


Wednesday, August 24, 2011

Going through my spam folder

I've decided to take a trip to a scary place.  This is the part where you go ooooooo!  I'm taking a trip to my spam folder, but don't worry, I'm not opening any of them.  I rarely venture into this no man's land, yet today feel the bravery of ten grinches plus two.  (Can you tell I'm making my Christmas lists?)  So, with this incredible strength comes the incredible ability to laugh at one's self.  So, this is what my spam folder has to offer me...

Ah!  Finally I have the natural mail enhancement I'm looking for.  Now my letters will get there really fast.  Oops, I read that wrong, it's male enhancement.  Hmmm...I don't think I can use that after all.  The next spam doesn't specify whether the penis enlarger is natural or not.  I still don't have a penis so I'm pretty sure I don't need it enlarged.  Okay, now this one is just plain scary.  It's from Accountant's World.  I majored in Accounting for my undergrad and it seriously is scary boring.  I had horrible dreams when I was doing my accounting classes.  In my dreams I didn't know which column to put the numbers in!  It's an accountant's nightmare.  Ah!  There are lots of diet ones.  What are they trying to say about me?  I wish the spammers could see me sticking my tongue out at them.  I'm being offered a Rolex replica.  Can someone tell me the point of having a Rolex replica?  Personally I think you'd either buy a Rolex or buy a cheaper watch.  But, hey, I'm not a spammer, so what do I know?  Yes!  I get the "top 10 lesbian movies!"  I have a feeling they aren't lesbian romances though, but lesbian porn.  Not that I have a problem with porn, but I'd rather watch romances.  I like mushy stuff.  :-)  Oh yes!  I get a cash payment now.  I wonder how much?  Probably a million dollars from a Prince in Nigeria.  I'm not opening any of the junk mail in case I get a virus.  I even won the Irish lottery.  Strange, I don't remember entering.  Someone named Arora just straight up asks me if I "wanna have sex tonight.", I don't want to have sex with you, Arora.  Someone wished me an "unhappy birthday."  I mean WTF is up with that?  Seriously.  I didn't wish them an unhappy birthday.  In Alice and Wonderland they have a happy unbirthday party, but not an unhappy birthday party.  The, ahem, don't laugh, "FBI," told me I'm under arrest.  One email is actually marked "SPAM : Do not ignore this email."  I'm going to be taking a walk on the wild side and ignore the email.  Ooo, baby, someone asked me if I'm looking to get laid tonight.  Not by you, spammer, not by you.  One message subject just says congratulations.  They must be wishing me congratulations in getting into grad school.  How sweet!

I love to periodically go through my spam mail for a laugh.  Sometimes I find mail that wasn't supposed to be there.  Usually, though, I have a good laugh.  Spam always picks up my mood.

Everybody has accounting dreams...right?

Thursday, August 18, 2011

Feeling accepted

I never felt accepted around others as a child or adult.  I still don't, not in person, or on Twitter.  I always feel like someone is thinking "she's so stupid," "she's so ugly," "I really wish I didn't know her," "I can't wait until she leaves," and a few other ones left over from being bullied that are much worse.  I'm afraid if I wrote those out I would just sound stupid.

I was bullied severely as a child and teenager, which made me less accepted than I was before.  I think part of my neck pain issues stem from an injury I received when a bully beat the shit out of me my junior year in high school.  It left me in a neck brace for two weeks.  So I really think it's possible.  Add that to severe emotional abuse from my bitch of a mother, and my self-esteem was tattered.  I've been working on putting it back together, but I still always have that feeling that everyone secretly thinks I'm stupid, clumsy, an idiot, ugly, etc.  My mother used to tell me because I so shy I look like I'm mentally retarded.  So, the really bad social anxiety I have isn't a surprise at all.

That's why I find it so awesome that the EDS community on facebook accepted me so easily.  Part of me keeps thinking that if they really knew me, surely they wouldn't like me.  Yet, the longer I know these wonderful people, and the better I get to know them, the more I feel accepted.  This is a new feeling to me.  It is wonderful, and I am afraid I will do something to mess it all up.  Knowing that people who have never met me share the same problems and care about me, well, it's almost overwhelming.  For the zebras reading this...thank you for your friendship, it means so much!

Sunday, August 14, 2011

Neck pain again, again, again...

Well, I did it, I talked to DH about the possibility of something else being wrong.  Right now I'm in a lot of pain in my neck.  I think that about describes EDS-a pain in the neck!  My neck pain causes constant headaches, or maybe the constant headaches are caused from something else.  I don't know.  Either way, I'm in pain and I don't like it.  My teeth hurt on good days, as do my eye sockets, ears, back of head (especially), forehead, cheeks, and shoulders from the neck pain.  On bad days I can't move my had from side to side and I can only lift my head off the pillow for very short periods of time, i.e. to roll over in bed.  The pain is in my upper neck and the bottom of my skull.

DH is afraid for something else to be wrong with me.  He hasn't looked at my Chiari page, but he feels that I don't have it.  I have no idea one way or the other for sure, I mean I'm not a doctor.  I just think something is wrong with my neck and/or something Chiari or Chiari-like is going on.  That is just my opinion, though.  I obviously don't know for sure on anything. Perhaps the symptoms I have are normal for people with EDS and fibro.  I just honestly think something is wrong, especially with my neck.  It could be something really simple in my neck, but either way I'd like it looked at and hopefully told how to fix it (that hopefully does not involve anything horrible like surgery).

I want to work on my cross-stitch, and I might get it out in a little while, but I don't know if I can do it with neck pain like this.  I still have to unload the washer.  The stuff in the dryer should  be dry.  This damn dryer you have to dry something over and over again.  And to make a long story short, I bought it off my rapist from years ago because I didn't recognize him at the time (it had been years).  The dryer doesn't work well, but at least it eventually dries.  I hang up on the clothes rack half of every load so what goes into the dryer isn't as much.  Right now my head just hurts too bad to do it.  Yesterday and the day before my headache almost reached a migraine level of pain.  At least my headache isn't quite that bad now.  It still freakin' hurts a lot though!

Today is my wonderful sister's birthday.  She is 27 years old and I love her very much and miss her.  She is currently stuck in an abusive situation that she refuses to leave.  She refuses all contact with me, but I plan on sending a happy birthday text to her from my email (the one she already knows about).  I contact her every few months and tell her I love her very much.  I hope that someday she can leave the abusive situation and be happy.  Today, though, is about celebrating her birthday.  So happy birthday, to my sister!

My sister and me in 1984

Monday, June 13, 2011

EDS never plays nice

Another person in the EDS Community has been lost, though this time it was not to EDS. Barbara Mostow Goldenhersh passed away from breast cancer this June, a few days ago.  Another EDSer is fighting for her life in the hospital.  EDS is such a stupid, stupid disorder.  Not only is it a thief, stealing someone's life and dreams away from them, but it also is a murderer.  It doesn't care whether it steals from or murders a child, mother, father, brother, sister, cousin, aunt, doesn't matter who you are.  EDS steals such a big part of your life away, so many of your dreams, your plans for the future.  EDS steals it and leaves your mangled body for you to pick up and find new hopes and dreams if you are lucky.  If you aren't, EDS sneaks in, murdering those unlucky enough to be born with the vascular form of this horrible disorder.  I wonder sometimes where on the "horrible scale" it is when people are not yet at the stage to accept EDS.  It is a hard place to be for long, and it is somewhere you don't want to hang out.  Yet there are those who let themselves live in that lonely place.

Right now I'm finding it hard to deal with EDS.  It's always harder for me to deal with it when it's after an EDSers death, even though that's not what took Barbara from this world.  She shouldn't have had to suffer EDS then get something horrible like breast cancer, too.  It's not fair!!! Why did she have to??? Why???  And why won't EDS ever play nice????????????

Thursday, June 9, 2011

Rescheduling, rescheduling, rescheduling...

I've been horribly absent from the blogging world lately and I do apologize.  I rescheduled my cardiologist appointment.  DH had three seizures that morning so we didn't get to go to University Hospital.  I had my rheumy appointment yesterday and had to reschedule that because my baby once again had three seizures the morning of my appointment.  I am really worried about him.  He not only has seizures in the morning now, but also in his sleep.  It used to be mainly in the evenings and at night before bed.

We are also having car problems (again).  The warning light keeps coming on saying the car needs coolant.  The thing is, the car has coolant and water in it.  We don't know what is going on but I trust DH to find out.

We are under a tornado watch right now and my BIL in Wichita, KS just called and they have spotted three tornadoes.  The whole Midwest and Northeast, according to the weather channel, is having major storms.  It isn't storming (yet) here.

I'm a bit frustrated that it is always something that keeps me from getting to my doctor appointments.  The last time it was car troubles, money, and I was too ill.  This time my honey was too ill.  I'm afraid next time our car will not be driveable, what with the light coming on and the reservoir of antifreeze and water emptying into a leak.  I can't even begin to search for an answer to my questions about the possibility of Chiari until I get these two and my endocrinologist out of the way.  I am so frustrated!

I've been having a new heaviness with pain, stiffness, and a feeling of swelling in my legs for awhile now.  I'm not sure, but I don't think they do swell, except for my hands, ankles, and feet.  They only feel okay when my hips and knees are straight.  I used to stretch by straightening out as straight as I can in bed and I could never sleep that way.  Now I sleep with my legs straight, often on my back or stomach, instead of curled on my side like usual.  Of course I still have a pillow between my knees to align my spine while laying on my back or side.  Then, instead of tossing and turning like usual, my legs are so incredibly heavy that I stay in that one position as much as I can until I fall asleep and often stay in the same position in my sleep, too.  It started about five-ish months ago and it seems to be holding steady, but was much worse during the two months I took physical therapy.

I've also been having shoulder blade pain for about three months now that is different than before  It feels like someone is pouring acid on my shoulder blade, and only in a specific site.  Here is where it is:

Well, I guess that is all my news for now.  My birthday is Sunday, I'm going to be the big 3-0.  I can't wait!  I've wanted to be 30 since I was 18.  I feel like I just started living when I was 27 and got away from my abusive family, so this is a happy occasion for me.  :-)

Saturday, June 4, 2011

Fun post

I went to and entered in this blog's URL.  It is supposed to show you what words you use the most and least.  Unfortunately, I'm pretty sure it just does the first page you see.  It's still pretty cool, though, isn't it?

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 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***

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,

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.  

Wednesday, April 27, 2011

Flare (again)

I thought about trying to say something really poetic about the high level of pain I'm in today.  The best I could come up with sucked.  Pain makes it hard to think.  It was "If pain was a color, I am that color."  Yeah, I know, not exactly my usual caliber, is it?  Actually I don't remember if I've ever posted poetry on any public blog.  I will have to share soon.  I will share a doodle from awhile back with you.  That was taken when it wasn't incredibly painful to write.  Since no poetic ideas are flowing currently I am going to steer away from poetry and into the world of...physical therapy!  Woot!

I got up this morning to go to physical therapy.  I usually have PT on Monday, Wednesday, and Friday.  When I get to the hospital, I get my walker out of the backseat to go inside the hospital out-patient entrance near the PT department.  Often, DH helps me get my walker out, because it is a bit bulky.  While it is bulky it is awesome.  It's more than awesome, it's snazzy.  But, I digress...  I get the walker out and make my way inside and down the hall.  It is a straight hallway from the entrance that goes straight to where I need to go.  The PT department is at the end of the hall, it dead-ends there.

I very, very slowly made it toward my destination.  By the time I was 1/3 down the hall I was supporting as much weight as I could onto the walker because of the pain in my legs.  The hall seemed to be a tunnel, and the PT department was the light at the end of the tunnel.  I finally made it through the open doors of the goal.  I had only fifteen feet more to walk to a chair so I could sit.  I made it to the chair and sat down as fast as I could without causing anymore pain.  My pace was a little slower than a turtle walks, but that was my best, and I can only do my best.

When my awesome physical therapist walked in she immediately looked at my face and pointed to the patient room she does the myofacial tender point indirect releases and light massage in, instead of asking me if I want to go to the patient room or the gym, like usual.  She worked on my neck, my piriformis muscle, my shoulders and my legs.  After than my pain level had dropped from an 8.5 to an 9 out of 10.  Any reduction in pain is appreciated.  I had to use my walker to sit and wait on the other patients so that I could ask the receptionist to use the phone and call DH to wait at the door.  After starting my way down the hallway that had somehow lengthened since last time, I had to stop and use the seat on my walker twice.  I don't know why that didn't occur to me on the way down.  I would have collapsed with weakness and pain if I didn't have that walker seat.  Thankfully, I did!  I somehow made it to the car and from the car to the front door, and from the front door I made it the two steps I needed to take to gently sit on the couch.  By this time my pain was back to a 9 out of 10.

My pain at this moment is an 8, and I'm not sure how I'm supposed to make it through the day without losing my mind (again).  I think having chronic pain makes you become a stronger person, and you don't get a chance to choose to have it either.  It's not like some people choose to join the Army to become a better person/soldier.  Or they choose to enter the priesthood to become a better person in their God's eyes.  I however, didn't choose to live in chronic pain.  I didn't choose to be disabled.  I do choose to be the best person I can be.  I try to remember that when I start feeling sorry for myself.  I may be under thirty and on a walker, but I can still live a full life, just not in the same way others do.  I am still a spiritual person, an ethical person, a person who likes corny jokes, and animal lover, a procrastinator, a writer, and a bookworm, whether I am disabled or not.  I'm still me.  That's what I have to remember no matter how much pain I'm in and what I want people to always remember about disabled people, or anyone different, whether it's a religious difference or a sexual orientation difference, people are still people on the inside.  I'm rambling.

Wednesday, April 20, 2011

Denial on a brick wall

I am trying so hard to live in denial but things keep happening that make me face reality.  I don't like this!  I want to have a big brick sign built around me that explains I'm in denial so people (or my body) will quit hitting me with reality.  

Reality says: Something is wrong with my bladder, I can only pee sometimes or get a good stream most of the time only by leaning into a certain position.

Brick wall says:  Everyone does that!

Reality says: My fingernails are starting to club.

Brick wall says: Everyone's nails do that around age 30!

Reality says: I need to get my thyroid checked and quit canceling appointments.

Brick wall says: I bet most people have cysts on their thyroid and parathyroid and don't even know it!

Reality says: I am told by my physical therapist I'll always need a walker, if only on bad days.

Brick wall says: By this time next year I bet I can jog two or three miles again!

Reality says: My sister may not want anything to do with me for another 20 years, if ever.

Brick wall says: My sister will realize the abuse she's taking and will love me again and want to be around me.

Reality says: I will dislocate my toes more often if I don't wear socks.

Brick wall says: Everyone dislocates toes when not sleeping in socks!  Duh!

Now, can someone tell me why the damn reality of things keep hitting me and my brick wall keeps getting knocked down?  This is not the purpose of my brick wall!

Sunday, April 17, 2011

Bipolar stress

I've been forgetting to do my physical therapy homework lately, which isn't like me.  I'm usually really good at doing it, but lately everything seems messed up with all the stress.  I want to try doing it everyday except Sunday like I'm supposed to again.

I haven't talked much to my fellow EDSer friends on Facebook.  They did remind me that they care and that they are there, though, which meant a lot.  At the same time all this good stuff is happening I still feel like I'm holding my breath, waiting for the other shoe to fall.  I'm waiting for something bad to happen, because for the last year life has been nothing but a string of bad things happening.

I'm depressed, anxious, sleep all the time, cry a lot, get angry easily, and am very moody.  I think that the stress, rain, hormones screwed up from PCOS, and anxiety are all getting too much for me to handle along with my bipolar.  If I could give up any one of my multiple medical problems, I'd give up the bipolar.  I hate being bipolar, and there is still so much stigma attached to it.  Some people actually don't believe in mental illnesses (like Tom Cruise and other Scientologists) and that makes me feel as if they are belittling the experiences I've gone through.  Some people mistakenly believe that bipolar is actually fun.  Trust me, it's at the opposite end of "fun."  Thinking it is fun couldn't be further off.  Bipolar is devastating and can ruin your life easier and quicker than any other medical illness I have.  I have lost years of my life to bipolar and the ability to work.

Most of the time I have pretty good control over it now, I take my meds and do pretty well, albeit moody.  Lately, though, I've realized that my bipolar is turning into a monster out of my control.  I have more anger outbursts, more tears, more pronounced mood changes, more thoughts of self-injury (SI).  That's the thing with bipolar.  You can't count on it to be up, down, both, or stable.  You never know what it will be like from one moment to the next, but you hope that it will be a moment under your control.

I think it is important to talk about mental illness to take away some of the stigma.  I have bipolar and a chemical imbalance in my brain.  I take medication that helps me manage that, but sometimes it still gets out of control.  Most people with mental illness are not violent, like the media wants you to believe.  I am a peace lover and am completely non-violent.  To be honest, some people can get their life back after their first major episode, some people get parts of their life back, and some people never come out of it.  I was one of the semi-lucky.  I have parts of my life back, but I'm still disabled by the bipolar and I can't work even if I didn't have EDS.  (By the way, Dr. W told me I'd always be disabled with EDS, too.)  If you ask my honest opinion, most people never regain the life they had or the level of stability they once enjoyed before their first bipolar episode, no matter how "good" they are doing.  You have to realize that doing good with a mood disorder is different that a "normal" person doing good.

I want to share a picture project I did of myself that I call "Manic Depression."  (Manic depression is the old name for bipolar.  They mean the exact same thing.)

"Manic Depression" by Amy

It is past two thirty in the morning so I guess I should stop writing now.  Good night all.


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