My 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, November 30, 2012

Wednesday, November 28, 2012

Wordless Wednesday: First Aid for Seizures

What to do when someone has a seizure.  I want to add that there is no reason to call an ambulance after a seizure for most people with epilepsy.  If you call one when they ask you not to, THAT PERSON may be too out of it to protest much and could be taken to the ER. They will then have a HUGE BILL for something that they didn't  even need to go to the ER for. That's why it is important to listen to the person who just had a seizure if they say please don't call 911. #epilepsy

These are instructions for what to do when someone has a seizure. I want to add that there is no reason to call an ambulance after a seizure for most people with epilepsy. If you call one when they ask you not to, THAT PERSON may be too tired to keep protesting over and over, and could be taken to the ER. They will then have a HUGE BILL for something that they didn't even need to go to the ER for. That's why it is important to listen to the person who just had a seizure, and if they say please don't call 911, then please don't. Not to mention, being taken to the hospital when you don't want to go is a serious invasion of your privacy.

Monday, November 26, 2012

Locked in tiny rooms

I hope everyone had a nice Thanksgiving.  We had a roast with onions, potatoes, and carrots, with rolls.  A friend brought over leftovers from his family's Thanksgiving dinner, and DH had some of that.  We were going to have either a ham or a roast, but when we looked at the prices on hams, they were amazingly high, as were the prices on beef roasts.  So, we got pork roast, and it turned out very nicely.  We didn't eat until nighttime, because my pain levels were so high I couldn't eat.  I had to lay in bed clenching my fists, screaming, crying, and trying not to vomit, from the pain that afternoon and evening.  That night, the pain lessened enough for me to eat, so we had our roast and rolls.  I wanted to make pumpkin pie really bad, but I just wasn't able to do it.  Our friend has brought over three slices of his mom's pies, so we split each piece of pie for dessert.  I was very satisfied with our meal.  Jim finally made the pumpkin pie the day before last, because I still am very bad off.

I keep having dreams of being beaten and locked in tiny rooms.  I know what they are about, but I keep having them anyway.  I dream I'm being beaten because I'm in so much pain, I feel like I did when I was beaten before.  Actually, I hurt a lot more than then.  Secondly, I get locked in tiny rooms in my dreams because I feel so claustrophobic in life because I'm stuck home all the time.  The whole world goes on around me and my only connection to it is my computer.  I worry about becoming bedbound from pain. I don't even worry anymore that someday I may be in a wheelchair.  All it makes me think is that maybe when/if that happens I'll be more mobile and can get out more then.  Right now I am on a walker with a seat, and have to rest often.  I have to use the scooter at Wal-Mart, which I hate because people are so rude to people in scooters.  Trust me, I'd rather be walking normal.  In the house I walk with a cane or by myself, but I have a tiny house,with no stairs, too.  I am locked away from the world, and it is very lonely.

I got out  to go shopping on Thanksgiving for our meal (we weren't able until then) and ended up in horrendous pain.  I got out the day before last, also, and I was in so much pain I was in bed the rest of the day crying.  On a normal day I have to rest my joints multiple times a day by laying down for a few minutes to a couple of hours each time.

I am so frustrated.  Here I am, only 31, and my life has turned to this.  I'm so scared that next I'll be bed bound, as I almost was before.  The cold is getting to me really bad this year, and the temperature is just now starting to really drop.  Oh, and my rheumatologist still hasn't called in my fibromyalgia medication!

I've been trying hard to develop other hobbies, and to work with my spirituality, because I don't want to get to the point where I think of myself as only a diagnosis or list of diagnosis.  Yes, I'm and EDSer, with fibro, POTS, epilepsy, bipolar...and a shitload of other stuff, but that isn't who I am.  When I say "I am an EDSer," I don't mean "I am EDS," I mean "I am part of the EDS community who calls themselves EDSers."  I learned long ago how you word things matters.  For instance, I am not bipolar, but I have bipolar.  I am a woman with fibromyalgia, but I'm also a woman with a great sense of humor, who wants to be a mommy, who likes to crochet, and who loves cats, dogs, and zebras.

Tuesday, November 20, 2012

She was so nice I cried

Yesterday I called my Medicare Rx (part of Medicare Part D) provider because I got a strange bill in the mail.  I was sure that my premiums were all paid by the state this year, so I was really confused by the bill.  Was this from 2012?  Is it for 2013?  I listened to some bad muzak and was transferred to a very nice woman.  She explained that the state paid my premiums in 2011, but not in 2012, so I had not paid them--all year.  She made a seven month payment arrangement with me, where I will pay my monthly premium plus that payment.  I thanked her for being so nice and actually cried on the phone because I was so thankful.  I've never talked to someone about being behind on a bill and had them be nice about it.  She told me that if she expects others to be nice to her, she has to be nice to them.  Then she wished me a good day and a Happy Thanksgiving.  Wow.

I think anyone who has had to talk to many creditors on the phone, most of them shouting at you, many of them telling you what a bad person you are, would understand.

I've been in a flare because my rheumy (who is only a PA or NP) that treats my EDS and fibromyalgia, doesn't know how to read paper that comes out of a fax machine.  Over the past week my pharmacy has faxed the office three times and I've called and left a message once.  The medicine I need is crucial to keep my pain levels down and keep muscle spasms down; I seriously feel like screaming sometimes.  She's at a University Clinic!  Shouldn't I be receiving better care at a University Clinic?

I called her office last week to make an appointment for after the first of the year, and got one for January 3rd.  I asked them to send me a map.  On the map they wrote "Appointment: December 3rd," with a time.  I called them yesterday and asked if they changed my appointment to December, instead of the January 3rd appointment they gave me before.  They looked it up in their computer and said in their computer it said my appointment was for December 3rd.  Needless to say, I was frustrated.  I told them that when I made the appointment I stressed that I wanted it after the first of the year, and that they made it for January 3rd, which is what I wrote down.  Then, in a very brain dead sort of voice, the receptionist repeated, "December 3rd."  I asked her if she could please cancel the wrong appointment in the computer and make a new one after the first of the year.  So, now my appointment is right after the new year, and late enough in the day that we won't have to hurry to get there, since we live far away.  I don't have a Primary Care Physician, just specialists.  My EDS is treated (just the joints and soft tissue) by my rheumy.  I don't have a doctor for my overall EDS or POTS.  All my doctors, except my Neurologist, are at University Hospital, and so far these are my results:

Rheumatology Clinic - Bad
Cardiology - Clueless and Good Bedside Manner
Genetics - Horrible Bedside Manner and Semi-clueless
Endocrinology - Very Good

The only ones I see every year and a half to two years are my Rheumy and Endo.  I don't see Cardiology or Genetics anymore.  I'm supposed to see my Rhemy and Endo more than I do, but I can't make it up there more often than that.  It's about an hour away, and when you are in poverty, an hour away is very expensive.

Anyway, I have a payment plan set up for my Medicare Rx, I'm still waiting on my medicine, and I got a new appointment with my rheumy for after the first of the year.  Have a Happy Thanksgiving Everyone!


Tuesday, November 13, 2012

Wednesday, November 7, 2012

Epilepsy Awareness Month: What are seizures and epilepsy?

I am not a physician  Please consult a doctor before starting or stopping any medication, exercising, or changing your treatment routine. I am a woman who suffers from epilepsy, and the partner of someone who also has epilepsy.  I hope that by telling my story and educating the public about Epilepsy and seizures we can cause positive change.

As you know, this November is Epilepsy Awareness Month.

A seizure is defined as:
abnormal, disorderly discharging of the brain's nerve cells, resulting in a temporary disturbance of motor, sensory, or mental function. (1)
Epilepsy is defined as:
a disorder that results from the surges in electrical signals inside the brain, causing recurring seizures. (2)
Basically, for the most part, you have epilepsy if you have recurrent seizures.

Think of seizures as being a lightening storm in your brain.  Some seizures cause you to shake, some don't.  The ones that cause you to shake are called convulsive seizures.  Some seizures cause you to stare off in space, while some cause you to smack your lips over and over.  Are all of these seizures dangerous on the person having them, and if they are driving, riding an escalator  or crossing a street?  Yes.

People seem to think that only convulsive seizures matter, or that only convulsive seizures can damage your brain.  That is not true.  Any seizure can damage your brain permanently, and many people a year die from epilepsy and epilepsy related causes.

Seizures can be scary, especially your first few you have.  Seizures are also scary when you see someone you love going through it, knowing there isn't anything you can do to just take away the seizure.  After having a seizure, you feel like you've been beaten and kicked around by three grown men.  After seizures you may feel so exhausted you can't move, even if you finally stopped seizing in a very uncomfortable position.

The topic of seizures and epilepsy is very complex, and over the rest of November, I will be going more in depth on different subjects having to do with epilepsy and seizures.




(1) Emedicine: Epilepsy. http://www.emedicinehealth.com/epilepsy/article_em.htm
(2) Mayo Clinic: Epilepsy. http://www.mayoclinic.com/health/epilepsy/DS00342

Wordless Wednesday: November is Epilepsy Awareness Month

ep·i·lep·synoun /ˈepəˌlepsē/ 
A neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain






To learn more about epilepsy go to here.

Saturday, November 3, 2012

My Bucket List

Lately I've been reading a lot of bucket lists on blogs.  I am not sure why so many people are blogging their bucket lists, perhaps it's because the New Year is coming up.  Either way, I decided to jump on the bandwagon, and make up mine.  It's in no particular order, and I keep adding to it, of course.


  • Be a Mommy (and be able to breastfeed).  I have Baby Fever like you wouldn't believe.  I'm 31 and have PCOS and can't stop thinking about it! 

  • Have our Handfasting.  It's a wedding celebration ceremony, that we will choose to not marry us legally, though some people choose to legally get married with their handfasting.  We are not legally married now, and can't be as long as we are disabled and on Medicaid.  Because of that we would make less on disability and we could possibly lose our Medicaid completely all because we wanted to get married.  As you can imagine, two disabled people without insurance can only spell bad things.  Because we both have epilepsy (that's how we met) we could potentially die without our medication.  So as long as the laws don't change, we can't be married.  Trust me, if the laws changed, we'd be married tomorrow!

  • Publish a novel or novels.  That's been my dream since I was eight years old.  

  • Publish my memoirs.  Growing up with such a crazy life definitely makes for a good book!

  • Get my Master of Fine Arts in Creative Writing.  I would love to find a reputable and not expensive place to get this  degree online.

  • Learn Italian.  This is the language I'm working on learning now.

  • See Italy.  Once I learn Italian I want to practice it in the beautiful country of Italy!

  • See Ireland.  Some of my ancestors came from Ireland.  I hate beer, but I'd love to say I had a drink in a real Irish pub!

  • Learn Irish.  I want to learn Irish because so many of my ancestors were Irish.

I took a picture of my book.  It's been well loved since I got it 21 years ago, as you can see.

  • Learn Welsh.  I want to learn Welsh because of my interest in Wales.

  • See London.  I can't remember not wanting to see London!

  • See San Francisco and ride a cable car.  I've wanted to do this since I saw a Rice-A-Roni commercial on TV when I was a kid.
Rice-A-Roni, the San Francisco treat!

  • Go to Long Island to see my best friend in person.  She's just like the most awesome girl.  Ever!

  • Go to Alwood Cemetery again, where my Grandpa Ezra and ancestors, almost forgotten, but not quite yet, are buried.  

  • Visit Edgar Allan Poe's tombstone.  I know the guy who toasted him with cognac, and left three roses and the unfinished bottle of cognac, no longer comes, and is probably dead, but still...

  • Read War and Peace. This was on my list of things to do before I turned thirty, but since that didn't work, I moved it to my bucket list.

  • Own our own home and some land with trees on it.  In particular, I want a tulip tree, red oak, white oak, cedar, pine, juniper, dogwood, and redbud.  I'm not sure where we'll be then, but the climate sure as hell better support these types of trees!  
Redbud and Dogwood trees


  • Learn Arabic.  By this I mean Modern Arabic and Quranic Arabic.
The Arabic Alphabet

  • Read the Qur'an in Arabic. Not for religious purposes, but because it is a great piece of literature that has impacted the world, just like the Bible has.  Also, the Arabic in the Qur'an is slightly different than modern Arabic.

  • Visit the Middle East.  I find the Middle East customs very interesting, and the desert beautiful.  I would love to go see it in person, though I'd prefer to do it after the fighting settled down a bit.

  • Learn Russian.  I think learning Russian will be a huge challenge, but I really want to tackle that challenge.
The Russian Alphabet

  • Learn to crochet fancy stitches.  Right now I can only do basic stitches.
Honeycomb crochet stitch

  • Crochet a lace shawl.  This will take incredible patience and a lot of time because I can't crochet most days because of my hand pain.  I will also have to learn how to crochet lace, and to work with such delicate yarn.
Beautiful lace shawl

  • See the United States Holocaust Memorial Museum in Washington, D.C..  No one should ever forget the atrocities that the Nazis committed against the Jewish people.
United States Holocaust Memorial Museum in Washington, D.C.

  • Go to see Auschwitz.  I want to honor and pray there for those who died in the Holocaust, for all of the concentration camps victims, not just the victims at Auschwitz.  I also want to pray for something so horrible to never, ever happen again.  I just don't think I could go to all of the concentration camps and not break inside forever.
Auschwitz

  • Meet some of my long-time pen pals.  That would take me to Peru, England, Australia...
Wendy lives in Lima, Peru

  • See the Vatican. I am a former Catholic, and though I'm not Catholic anymore, it would mean very much to me to see the Vatican and go to Mass there.
Mass at the Vatican

  • Be well enough to hike in the woods again.  You wouldn't believe how much I miss the woods!
I want to follow this path to see where it leads, don't you?

  • Learn to knit.  I've even taken one-on-one classes on knitting, and I just can't "get" it.  I'm not giving up, though, and I think I may be able to loom knit on days my hands hurt, unless, of course, the hand pain is very severe that day.  On days like that I can't even type.

  • Raise a happy, well adjusted child that does not grow up to be an Elvis impersonator or a clown. I don't care what my future child grows up to be, but I really hope he or she doesn't grow up to be an Elvis impersonator or a clown!
Future child of mine...please, please don't grow up to be an Elvis impersonator!  I'll love them if they do, though. ♥

  • See Area 51.  "The X-Files" only made me want this more!

  • See my sister again.  I think about her all the time!  I love her so much, but she wants nothing to do with me.  Additionally, if she found out I'm not Catholic anymore, then I don't think she would want to or her husband allow her to see me again.
Sister Bear of the Bernstein Bears

  • Find a cheap non-drug treatment for pain that works.   For some people pain meds are a great thing, but I don't want to go on them, and I certainly don't have the money for a massage therapist or acupuncturist.  I barely have enough money to eat some days.  Many days.  That's why I risked people getting mad and put the donation box on my blog on the top right corner.
Chronic pain makes life lonely and difficult

  • See the ocean on the West Coast of the USA.  I'd love to see Oregon and California's costs.
Oregon coastline

  • Raise awareness for Ehlers-Danlos Syndrome.  I hope that I've helped people learn about EDS and inspired researchers to continue to search for a cure, and I continue to help in my own way.
Ehlers-Danlos Syndrome

  • Teach people what to do when they see someone have a seizure, and possibly save a life.  November is here, and I'll be doing epilepsy and seizure posts throughout the month.


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