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, December 31, 2010

Wednesday, December 29, 2010

January 2011 Goal


As I believe I've mentioned before, I am doing monthly goals rather than a year long one New Year's resolution. I think I will be more likely to finish it then.  I will be doing one year long goal again, which will be the same as last year's; to read 75 books and document them.  I have decided what I want January 2011's goal to be.  I want to:

Write (1) hour daily and body movement (2) times a week.


Writing for one hour each day will not include blogging, but writing either for professional reasons or writing to hone my craft, so to speak.  I want to get exercise in that gets my body moving.  Right now I'm not looking so much for aerobic exercise; for one reason I can't physically do it.  Some ideas for body movement include: cleaning on days I'm able to, riding the stationary bike for up to (5) minutes, yoga, walking Wal-Mart with my cane instead of a scooter...the list goes on.  I want to build my body up stronger in this upcoming month.  If you remember, yoga is easy for me and probably a lot of EDSers because we are so stretchy.

I want to write for an hour each day because I really want to start doing a little big of freelance writing.  One of the ladies I really look up to, Linda Lowen, the guide for About.com's Women Issue's site is a writer.  I think it is important for each writer to have someone she or he looks up to as a writer.  I look up to JK Rowling, but Linda is much more approachable than JK Rowling.

I'm afraid that if I don't start writing then I'll lose some of the abilities I currently have.  By the way, please do not judge my writing abilities by my recent posts.  I am in an EDS, fibro, and ME/CFS flare and I think it is incredible I can so much as string a sentence together right now.

I really think the goal of getting movement in is better than a goal of say "I'm gonna lose weight this year."  That is too vague and it is a lofty goal if one expects to keep losing weight the entire year long.  Well I do believe I'm going to end this now.  If I don't write again by then, Happy New Year.

Monday, December 27, 2010

2010 in Review


"For last year's words belong to last year's language and next year's words await another voice." ~T.S. Eliot 




Winter 2010 January 01 - March 19
This past winter something wonderful happened.  We had a new addition to our family, our tortie girl, Niki.  She has brightened our lives and showered us with her love.  I also started college.  I was pursuing a Masters in Sociology with a Graduate Certificate in Women's Studies.  I really wish I could have finished, but I couldn't.  My last day of class I had a bad seizure and the asshole paramedics took me to the hospital.  I told them over and over I didn't want to go but they insisted.  I was so confused that they later told me I answered that the date was 1997 and that Bill Clinton was President.  At least I answered the correct President for the year.  By February I was already withdrawn from school.  Quitting college created a personal disappointment in myself.  During this time I was also struggling religiously.  I left the Roman Catholic Church.  I was scared an excited at the same time.  I was also getting used to my EDS diagnosis.  I made regular YouTube videos on my personal journey with EDS and fibromyalgia.  I joined Facebook and met some awesome other EDSers.  I stared to blog again after a blogging hiatus.  I joined Twitter and soon became a Twitterholic.  I became increasingly mobility impaired and by this time had to ride a scooter around big stores, like Wal-Mart.  I continued to write to my pen pals, whom I really love.  I didn't have enough money to send my Christmas cards out until February, but I didn't want my time and money to go to waste, so I sent them anyway.  I threw up for the first time in years, which may not sound like a big deal, but it was to me.  It seems weird that I can't do something that comes easy to someone else.  It's hard to explain to someone who has normal capabilities.  For a short while my double vision came back and I had to carry eye patches with me at all times.

Spring 2010 March 20 - June 20
Spring was a happy time, which we really needed, because Summer would turn out to be stressful.  I because increasingly disabled by pain and my mobility issues continued to worsen.  I began to study different religions. I started with Islam and Wicca.  When I started the Qur'an I thought it beautiful.  Then I got a few pages into it.  I no longer think it is beautiful.  I will go into this more in my religion blog, The Disillusioned Agnostic, I started to branch out my studies to general Paganism.  I started some seeds to start a garden but didn't get to finish for lack of patience and for loads of pain.


Summer 2010 June 21 - September 21
The summer was horrible, horrible, horrible.  Two adults, Tiffany and Derek, and Tiffany's son, squatted in our house all summer.  We eventually had to pay them to leave.  There is a law in this county that if someone stays in your home for 24 hours they have squatters rights.  That is a stupid law.  The police threatened us that if we so much as put their stuff on the lawn we would both be arrested.  I was freaking out.  If you tell a rape victim that you will arrest her for putting someone's stuff on the lawn because they are squatting in your house the policeman might as well have said "If you so much as put their stuff on the lawn you will be raped in jail and if we're lucky we can get you raped in prison!"  Police have absolutely NO respect for law abiding citizens and/or rape victims.  Don't believe Law & Order: SVU, the police don't give a flying fuck about rape victims, or any victims, for that matter.  I want that to make that clear.  I have another point I want to make clear in the next section describing autumn.  My religious journey came to a stand still as I was too upset to meditate or think deeply on anything.

Autumn 2010 September 22 - December 20
This autumn my DH's mom when into the hospital and they didn't know if she would make it.  She did make it and now is getting better every day in a nursing home.  She wants to come home soon, but she doesn't have a home to come home to.  Two of Jim's brothers and one of his sister-in-law's were here for over a month until one of my BILs left three days before Christmas with no warning.  My DH was very worried about his little brother.  We were all worried sick about him.  During the four days we stayed with my MIL in the hospital I realized that my experiences were not unusual.  Doctors, as a rule, do not care about their patients.  I'm sure some do, but most don't.  While you lie awake in bed at night crying in pain they sure as hell aren't thinking of you.  This question is reserved for most of the doctors I have met in my lifetime.  How can you stand to look yourself in the mirror?

Winter 2010 December 21 - December 31
Christmas was wonderful.  We had a friend come over and bring us Christmas dinner and I have to admit, I started crying I was so touched.  We have only a few days left of the year.  A couple of days before Christmas I received a wonderful gift from an old high school friend.  She let me know that my Togy, my dog I grew up with, is okay.  I miss Togy so bad, especially on holidays.  I couldn't move him because he was almost completely blind plus he grew up with Nippy, his "wife."  I saw Togy last on November 05, 2007.  I guess I'm going to just be mysterious, because I'm not explaining why I can't/haven't seen him.  I miss my baby so much.

I am thankful for so much this year.  I have my DH and our two kitties to begin with.  I was able to get a stationary bike of of freecycle last week.  I feel so very loved and my DH makes me feel like a princess.  I've made wonderful, wonderful friends on Facebook as well as Twitter (though generally not to the same degree) and I have awesome pen pals that look forward to my letters and I look forward to theirs.  I was able to get my DH a Christmas gift this year and that was wonderful.  I hate not being able to get my baby a present.  Right now DH is sleeping beside me but I'm not sure how much longer he can sleep.  Niki is walking all over him mewing and trying to wake him up.  Her and Sterling are always doing something crazy.  She slept on top of me last night.  I think I'll end this now.  I have decided for the new year that I am going to do monthly resolutions rather than one for the whole year.  I have a mini-resolution for this last week of December.  Actually it's less than a week left of December.  My mini resolution is to blog what I eat everyday and to record what if and what kind of exercise or movement I do each day.

Wednesday, December 22, 2010

My Own Patient Advocate

I think my sweetie just realized this morning what kind of patient advocate I am for myself, and now for him.  He thought I got referrals for all of my specialists.  I used to.  I rarely do anymore.  I didn't have a referral for Dr. W, the geneticist specializing in connective tissue disorders, that I hope to see next month.  I didn't have a referral to the last rheumy consult I had, Dr. K., in Lee's Summit.  I didn't have a referral for my endocrinologist, Dr. G., in Columbia.  I didn't have a referral for Dr. A., my neurologist.  DH just called up his neuro and asked if I could get an appointment there.  Unfortunately we don't have the gas to get to DH's dermatologist appointment in Columbia today.  DH thought that a doctor had given him a referral to get the appointment.  Nope, it was his sweet wife who is worried about the numerous patches of suspiciousness growths on his skin.  He was the one who pointed these growths to me and I know that he's scared, too.

I just started subscribing to an About.com newsletter, aptly named, Patient Empowerment.  I am trying to figure out if I should push for finding out if something neurological is going on.  One of the ongoing arguments Jim and I have is whether or not I have EDS.  If you listen to his side he thinks that I am going to make myself worse my resigning to accept the diagnosis of EDS.  He can even say this after he sees me put a joint back in!  I don't think he realizes how I feel really, really hurt by this  is and how angry him saying that makes me feel. Sometimes I feel so embarrassed at my symptoms.  I'm sick of yet joint slipping around.  I'm sick of walking unsteady.  I sick of passing out and trying to make no big deal of it when really it is scary to me.  I'm sick of visual disturbances and falls.  I walk so slowly with my cane I hate it and it's embarrassing.  I've been trying lately to not cry from pain and  thus show how bad I hurt by digging my fingernails into my palm and concentrating on the feelings in my palm.  I also use this method to keep myself from crying from anxiety.  It may not make sense to cause pain to keep from crying from pain, but it is actually more complicated than that.    I hate myself so much sometimes for always being sick.  I'm not sure what I did to piss what god off or karma or whatever.  I must have been really, really bad in a past life.  I've been getting up and getting things most of the time rather than let DH get them because I'm trying to hide how bad I really hurt.  Part of my unconscious is always taken up with pain so it makes it hard to learn, remember conversations, names, or dates.

Shit, both ankles are acting up.

Okay, I'm back.  My DH has to put the joints right for me.  Sometimes I can, sometimes I can't.  This was a can't.  This was also a particularly painful time on my right ankle.  I'm scared because my rheumy will not let me into physical therapy, pain management, or who ever makes braces/splints.  I'm scared because no one will give me a "game plan."  I don't have a primary care physician. None of the doctors I've tried seeing don't want to see me because of my medical problems, and if they do "excuse" the other medical problems they refuse to see me because of the EDS.  Even then, in the rare instance a doctor doesn't care about the following, they don't believe I'm in pain.  My rheumy is who I'm thinking of.  Her and the other doctor at the practice don't believe EDS hurts, EDS patients wear braces/splints, or that my H-EDS is even something that needs following up on.  I went and saw a cardiologist and she was really nice.  It was great to have a nice experience with a doctor.  Usually the only doctors I like are my gyno and endo.  So the cardiologist did a Tilt Table Test to check for Dysautonomia but I had to stop after awhile because I couldn't stand up the full length of time.  I was in agonizing pain after standing as long as I did.  Then they did an echocardiogram, which is an ultrasound of the heart.  My chest muscles are painful so when she pressed the instrument that she used over my heart it was so very painful.  I cried during both procedures.

I have what I believe are neuro problems as I went into on this blog entry and I posted a reaction to the comments on this entry.  I see tiny dots all of the time as well as blocks of color.  I just call them visual disturbances.  Let me differentiate a visual disturbance from a hallucination for those who don't know:

"A hallucination, in the broadest sense of the word, is a perception in the absence of astimulus. In a stricter sense, hallucinations are defined as perceptions in a conscious and awake state in the absence of external stimuli which have qualities of real perception, in that they are vivid, substantial, and located in external objective space."  http://en.wikipedia.org/wiki/Hallucination
This means a hallucination is something that you think is real.  I know that the colored rectangles I see and numerous colored circles are not hallucinations.  I also don't think that they are floaters.

I don't know what to do.  I know that I have to be my own patient advocate.  I know I need to appear strong, whether I am or not.  I'm in enough pain now I don't know if I'll be able to stop the tears.

This isn't getting me closer to an answer.  Often writing helps me to make decisions, but this time it didn't.  I feel more confused and scared about my health that when I started.

Wednesday, December 15, 2010

Once again, the uninformed arse strikes

Wow.  After that blog before last I received four comments.  That entry was very long and personal to write, and looking back probably wasn't a good idea to post online.  I published the first three comments but the fourth one I did not; it really made me angry and hurt my feelings.  The person who commented did not have enough guts to leave her or his name.  She or he stated that they are a medical professional and that they recognize my symptoms to be caused by a mental disorder.  As you can imagine, I was steaming mad and exceedingly hurt.  I was so hurt that I cried for quite awhile.  There have been so many times in my life that doctors have discarded all of my physical complaints and tried to pass it all off as mental illness.  I cannot say enough how hurtful that is, not to mention harmful to my health to ignore what is really wrong.  I know I'm not the only one who goes through this, many spoonies have gone through the same thing from doctors, friends, and family members.  I, for some reason, didn't expect to find those comments on my blog.  As my DH pointed out, my blog is open to anyone out there, not just the supportive community of spoonies I belong to on Twitter and Facebook.  For that reason I need to ready myself for comments not only from supportive friends, but also from people who don't understand what I am going through, don't care to understand, but are quick to judge things they don't understand.  As for the supposed nurse practitioner who commented the unpublished comment, please educate yourself on things you don't understand before you make false judgments.

Saturday, December 11, 2010

Seizures of a Different Type

I had a really bad seizure today that scared me a lot.  It was different that other seizures.  I was catatonic for awhile before seizing and then catatonic for awhile after seizing.  I mean it felt different than usual.  I only had a  few seconds as an aura before I started feeling bad.  I'm still not feeling that well now, but I'm waiting up for our late dinner.  We are having the frozen lasagna that you can stick in the oven for 75 minutes or whatever.

I was going to go back to grad school online because I thought DH wanted me to so that we could get extra student loan money leftover.  Tonight he told me he wants me to do what I want to do. He said that he doesn't want me to do anything that I don't wan to.  So I'm not going to grad school!  I'm so excited!!

I invite you to celebrate with me! Do a little jazz walk saying "No grad school, yeah! No grad school, yeah!"  I really don't think I could handle being a full-time or even part-time student mentally right now.  I'm getting hungry, it's past 11 pm. Well I wanted to blog a quick little blog...so here she is! Good night dears. 

Saturday, December 4, 2010

I'm going to find the right doctor...

I've decided to put together a list of my symptoms I'm having that are unexplained.  I only put the unexplained symptoms, that is symptoms that aren't any of the problems I'm already diagnosed with.  So...I'm on my search for the right doctor.  I do get to see Dr. W next month (pray that there is no snow).  She's across the state and is supposed to be a leading expert in EDS.  Okay so here is that master list I mentioned...

  • Daily Headaches of a new type (can rarely even wear clips in my hair anymore) 
  • Painful tension in neck and upper back, I can even feel the muscles knotted 
  • Extreme Fatigue, worse than every before 
  • Migraines 
  • Depression 
  • Visual floaters 
  • Hair Loss 
  • Hard to breath while laying flat on back 
  • Severe leg pain 
  • Dizziness 
  • seeing colored spots and lines or "halos" 
  • Very hard time thinking, "brain fog" 
  • General imbalance / clumsiness 
  • Memory loss 
  • Can't pee but no UTI 
  • Intolerance to bright light / difficulty adjusting to light change 
  • Vertigo from position change or sudden standing 
  • Difficulty walking on uneven ground / feeling ground under feet 
  • Difficulty driving 
  • Difficulty negotiating steps 
  • Pressure / pain in the neck 
  • Pressure / pain behind the eyes (soreness in the eyeballs) 
  • Back pain 
  • Neck spasms 
  • Insomnia 
  • Swaying 
  • Pain when changing position 
  • Tingling / crawling feeling on scalp 
  • Intolerance to loud / confusing sounds 
  • Hot flashes 
  • Heat and cold intolerances 
  • Pain & tension along ear / eye / jawline 
  • Difficulty swallowing 
  • difficult breathing while laying on my back 
  • sore throat 
  • heartburn that only recedes by laying down 
  • Spontaneous vertigo 
  • Poor blood circulation / cold hands & feet 
  • Sinus / mucous problems 
  • Severe constipation 
  • Abdominal swelling and distention at night 
  • Nausea 
  • Difficulty reading / focusing on text 
  • Depth perception problems 
  • Swelling in legs, feet, hands, and fingers - especially in the morning 
  • Increased sweating 
  • Proprioception
  • Pain in shoulders and arms that feels like frozen acid being poured on me 
  • Slurred speech 
  • lack of gag reflex 
  • Pressure / tightness in chest 
  • excessive thirst 
  • Electric like burning sensations 
  • Unequal pupil size (doctor commented on that once before but didn't investigate it any) 
  • Popping / cracking sounds in neck or upper back when stretching 
  • Dizziness 
  • Dry skin and lips 
  • Stomach aches 
  • Seizures 
  • possible TIA (mini-stroke) (nuero did dx) 
Whew! What a list!

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