My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ 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 (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

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!

Friday, November 26, 2010

Lightbox Time

Tomorrow I plan to start my light therapy for my Seasonal Affective Disorder (SAD).  I really hate doing it, even though it isn't hard at all.  I just hate sitting in front of it; plus it gives me a headache.  I do believe it would be worth it, though, if I could stop cycling my moods into depression.  Lately I'm been cycling fast, with periods of semi-depressed to periods of very, very depressed.  I've been sleeping a lot and I cry all the time.  I really don't see the reason to get out of bed anymore, but I'm trying.  I really, really am trying.  My struggles with bipolar, SAD, Complex-PTSD, and my daily struggles with self-injury are something I don't typically talk about much.  Though I rarely self-injure anymore, I do struggle with it still.  I've been a self-injurer since I was 14.  In nearly every case of self-injury, especially cases that involve years of self-injury behavior, are a result of trying to cope with abuse.  My case is no different.  While it seems acceptable to have physical disabilities, mental health disabilities is still very stigmatized.  I struggle on a daily basis with both the physical and mental health issues I have.  I am lucky that I do know most of my triggers for flashbacks, depression, and mania.  Of everything the bipolar depression and flashbacks are the worst.  So, the depression, anxiety, and flashbacks are my biggest problems at the moment.  I wanted to show a picture of my lightbox on and off, and then take a quote from Mayo Clinic's article on light therapy.  I also want to mention that my lightbox is 10,000 lux.
Light therapy is a way to treat seasonal affective disorder (SAD) by exposure to artificial light. Seasonal affective disorder is a type of depression that occurs at a certain time each year, usually in the fall or winter.
During light therapy, you sit or work near a device called a light therapy box. The box gives off bright light that mimics natural outdoor light. Light therapy is thought to affect brain chemicals linked to mood, easing SAD symptoms. Using a light therapy box may also help with other types of depression, sleep disorders and some other conditions. Light therapy is also known as bright light therapy or phototherapy.

Thursday, November 25, 2010

Emptiness

Each day I'm emptier and emptier inside.  Today if it wasn't for DH getting his feelings hurt I just would have stayed in bed all day.  I just don't see the use of getting up.  I mean, what for?  Why would I care to get out of bed?  I just want to lay in bed, staring at the ceiling, with my mind millions of miles away.  I want to be millions of miles away.  I don't want to be me, I don't want to live in a broken body with a mind in danger of breaking at any moment.  With so many people in the house the only way I've been able to cope is to "shut down" a part of myself.  I feel like more and more of me is shutting down without my asking.  I'm not even sure that's a bad thing.  I just want to cease to exist sometimes.  Each day the wind howls through my soul, yet it doesn't blow away the clouds of mist which shroud myself from even me

Saturday, November 20, 2010

"Cat"











"Cat"

What crosses a cat's mind?
Chasing fuzzy red mice,
sleeping in the sun.
That's what a kitty things about.

What does a cat dream about?
Warm milk and full tummies,
chasing fast grasshoppers.
That's what a kitty dreams about.

Why can a cat jump so high?
Strong little kitty feet with ears pulled back,
wondering what is up there.
That's what kitties jump for.

What is a cat like?
Angle paws and soft tails,
sunning furry bellies, giving kitty kisses.
That's what a kitty is like.

by Lady of the Ozarks (myself)



Thursday, November 11, 2010

Lack of Patience with Apathetic Bitches

“Lack of Patience with Apathetic Bitches”
Saturday, November 06, 2010
9:06 pm

Sometimes I know I’m just supposed to smile and take it when someone is an apathetic bitch but I’m angry.  I’m angry that my life has been ripped from me and into the arms of PAIN, who devours me, regurgitates me, and then devours me all over again each day.  I live in fear, so, so much fear.  Would life be worth living if the pain never gets better?  What is the point at which life is definitely not worth enduring any longer?  

God forbid someone in agonizing pain finds pain relief!

Two days ago I went with DH (Darling Husband) to the dentist.  He said he wanted me to go back with him in the room when he talks to the dentist to see what the dentist has planned.  It was a really bad pain day for me; when we were halfway down we had to pull over and DH put both my ankles back in.  So when we got there and the dental assistant led us back to the patient’s room I sat down one on the stools.  She said that one stool was for her and one was for the dentist.  Oops, okay.  I asked her if I could have a chair because DH wanted me with him while he talked to the doctor.  She said no.  By this time I was crying in pain from the short time I’d been standing.  I was hoping snot wouldn’t start running out of my nose when I pleaded again to have a chair.  Again she said no.  By this time the snot was running down my face while I wiped at it the best I could.  It was hard to do while wearing glasses and crouched over, grasping at my cane as if my life depended on it.   I asked her once more and for a third time she said no.  That time I’d explained about my ankles.  At this point she turns around without saying a word.  The dentist walks in a minute later and I beg him for a chair because Jim wanted me to be there just to hear what the dentist had planned for his teeth.  I don’t think DH said anything at all during this whole thing.  I felt really stupid by then, but dammit, DH told me he wanted me there and until he said different I just wanted to hear what the doctor has planned for his mouth.  At that point I burst into tears hard;l the pain was excruciating and I started making this bizarre hiccup noise when I tried to stop sobbing.  DH told me to go back to the waiting room; the dentist already said what I needed to hear anyway.  I felt so stupid.  I mean here I am demanding a chair to this apathetic bitch and I should have just stayed in the waiting room or in the car.  When I got back to the front the receptionist told me that I shouldn’t have walked back there if I couldn’t stand.  I was making my way slowly toward a seat in the waiting room and crying my eyes out from pain when she said this.  I couldn’t help but say “If she could have gotten me a chair that wouldn’t have been a problem.”  When I said that statement she got up and walked quickly away.  What is it with these people? 

That night DH told me (and I don’t blame him) that I need to be careful to not cause people to get mad at me and thus him when the doctor is going to have his hands in DH’s mouth.  I completely understand, but for some stupid reason I felt ashamed, embarrassed, and confused; not to mention guilty.  I’m going to stay in the car next time.  At least there I can lay the seat back and not have to face any apathetic bitches. 
Oh, and I thought I’d mention that 1) I really want to have a wheelchair for times like this, and 2) the dentist office is not wheelchair accessible at all. 

Living in Pain

“Living in Pain”
Sunday, October 31, 2010
3:46 pm

**WARNING: COULD BE A TRIGGER TO SOME PEOPLE***





I am so tired of living in pain.  What does someone do when the pain won’t stop?  I’ve actually found myself wondering if it hurts to die. It can’t hurt worse than this.  I’ve even thought about slicing my wrists as a last resort.  No, I’m not suicidal, but I have to admit that when I really hurt I sometimes think about it.  The pain is constant, never ending.  I have endless ways to describe my pain.  I hate it.  Pain has invaded my body and set up residence throughout.  I want to bleed it from my body, let it drain out.  I just wish I knew how.

I’m so tired of living in pain. 
the pain won’t stop
the pain won’t stop
the pain won’t stop
Does it hurt to die?
Will a razor blade be quickest?
Will the pain even be noticed?
My body, my nerves, my cells
scream in fiery agony,
overpowering the sound
of my blood in my veins.
I can’t go on like this.
I can’t live like this forever.
the pain won’t stop
the pain won’t stop
the pain won’t stop
It’s invaded my body,
set up residence,
slowly destroying my life.
Can it even comprehend the damage?
I hate this pain,
I want to cut it out,
rip it’s roots from me.
the pain won’t stop
the pain won’t stop
the pain won’t stop
What if it never stops?

I want to repeat, though, that I am not suicidal and haven’t been for many, many years.  The feeling that comes with being suicidal; the emptiness, the endless pain, the knowledge it won’t get better and the incredible fear, are present.  Any wish to act is absolutely not there, and DH if you are reading this you haven’t anything to worry about.  There, just wanted to add that disclaimer there.

Remember, if I can’t write my feelings on my blog I’d rather just not have one, so please blog readers, don’t get upset.

When it rains it pours…or leads to hurricane!

“When it rains it pours…or leads to hurricane!”
Friday, October 29, 2010
3:46 pm

When it rains it pours…the rain leads to a hurricane…then leaves deathly flooding.  I think that about sums up the last week.  My mother-in-law (MIL) was in the hospital since last Sunday; which was the reason for our visit to Springfield.  We got there Monday.  We were surprised at how sick she was.  I knew from the phone conversations with my brother-in-laws (BILs) that she was really sick and could be on her deathbed.  Even though we knew what to expect it was entirely different seeing it with our own eyes.  There were times she was incoherent and I was really worried.  Then once she did her breathing treatment she was a bit more like herself.  That shows what lack of oxygen can do to the body.  My Aunt Gloria had hours of severe oxygen deprivation during her bout of lung cancer.  She has never been the same sense.  Now she acts like she’s had Alzheimer’s for years.  She’s been like that for ten years.  The doctors warned my cousins that after she woke up from the coma she may start acting as if she had Alzheimer’s even though she didn’t.  I hope nothing happens to my MIL like that.  From how she sounded in the hospital I afraid that her situation will be the same as my aunt’s.

I used a wheelchair the whole time I was in the hospital visiting my MIL.  I can’t walk very far at all with my cane, plus I went into another flare.  The first wheelchair I used fit perfect.  Then we went back to BIL #1’s and BIL #2’s house.  When we went back to the hospital my BIL #1 gave me a larger wheelchair.  That one was hard to maneuver because it was so big.  I couldn’t push myself far at all because of my wrist pain and both wrists subluxate very easily (usually 4-6 times a day).  I’m just glad that my wrists don’t dislocate (yet).  The second time I came back to the hospital after going to get BIL #1, BIL #2, and BIL #2’s wife, I got a wheelchair that fit perfect again.  I wish I could have taken one home.  I could push myself in the small ones just a little, while I couldn’t push myself in the big ones at all.  It would be really nice to have my own chair that fit me.  I have a pen pal whose boyfriend got her a wheelchair off Amazon.   I wonder how much it costs. 
I saw all of MIL’s children that were there break down and cry during her hospital stay, including her daughter-in-law, me.  I really love DH’s mom.  (By the way “DH” stands for darling husband.)  We ended up staying four days and three nights.  I’d only been out of a flare for a few days, so I went back into one in the flare.  I almost (DH doesn’t know this) asked DH to push me down to the ER because I was in so, so much pain.  I was so afraid to take any attention toward myself because, well, my MIL was dying down the hall.  I cried and cried I hurt so bad, but I was lucky enough to not draw too much attention.  I don’t think that anyone realized I kept crying in pain except for one older lady and maybe a couple of times I couldn’t hide it from DH.  I felt so guilty, but my mind and nervous system were filling full of pain signals.  I didn’t want DH to have to give me any extra attention but he later told me that taking care of me was helping him.
My MIL ended up going to a nursing home.  They still have a lot of work to do, but I really feel that it is the best situation for her, because I can’t bear to think of my DH’s mom dying.  I don’t really have a mom anymore and in a way I think that makes me love her even more.  All Jim had to tell me long ago was that his mom and BIL #1 were awesome and I loved them just because he does so much.  My MIL, BIL #1, BIL #2 and his wife have made me feel welcome and like family.  It means a lot, especially when my own family doesn’t feel the need to treat me like a human being. 

By the way, hospital food not only sucks, it’s also really expensive.

Is the ‘W word’ really that bad?

“Is the ‘W word’ really that bad?”
October 22, 2010
2:26 pm

I’m looking out the window and I can see some teenage boys tossing a ball around in the street.  I am ashamed to find myself jealous of these boys.  I used to move like that.  I used to toss a football, run in track & field, jog in the mornings, throw discus and shot put, think nothing of being tackled in a friendly game of football, walk barefoot to the park…  The thing is that when I did all of these things I didn’t appreciate my ability to do so.  Am I out of shape?  Definitely.  That isn’t my problem though.  The pain and loss of balance are my hurdle.  I would, though, love to be that way again.  I notice myself flinching when the boys catch the ball, as if it was aimed at and caught by me. 

I’m feeling a bit melancholy, usually I try to have an excellent outlook on life, but today it is really hard for some reason.  DH seems keep telling me I will be in that shape and in a lot less pain again soon.  I feel like if I don’t then I will be greatly disappointing him.  I know he doesn’t mean it that way, but that is how I feel. I have accepted the possibility of being in good health again as well as the possibility of a wheelchair, and of course anything in between.  I can usually look forward to each day knowing it could be better than today, but lately I feel like a failure because I can barely walk and must use a cane.  Sometimes I need both my cane and DH to even help me to the bathroom.  Every time we have a talk about my future health I just want to cry because we’ll have the same discussion once again.  The doctors said that there is no possibility of me ever being in a wheelchair but then again most of the doctors I have seen are quacks, yet DH believes them, asking each doctor to tell me I will never be in a wheelchair.  Right now I just want to be happy and whether it will happen or not isn’t a big concern for me.  I’m too busy trying to get through today.  I was very afraid of what would happen when I was first diagnosed with EDS.  I am happy knowing that whatever the future brings I can handle it, no matter how good or bad my health gets.  What DH is so afraid of is that I’ll no longer want to try and the whole wheelchair thing will be a self fulfilling prophecy.  The thing is, I feel best knowing that I am doing my best, rather than trying to avoid mentioning the “W word” and worrying about what DH will think of me if I fail.  He said that he doesn’t care that I’m disabled because he loves me very much.  I just feel like if he’d accept that whatever the future brings we can handle and that life does not revolve around negative prophesies but rather positive ones  (and that I am aware and know all of this) then we’d both be at ease.  I try my best, I clean house while I am often crying in pain.  I try my best, I really do.  I don’t like being afraid of failure, when in my eyes it isn’t even a failure.  I’d like to get a wheelchair for when we go on trips and so that I can go outside more than a few feet away from the car before hobbling back in extreme pain.  I’d rather use one once in awhile for long distance walking to save the energy levels I have and to reduce my pain.  If I got a “W word” I’m afraid DH would see it as throwing in the towel and that I gave up.   That is the opposite of how I feel.   I feel like I’d be saving some spoons so that I can use those spoons later.  I thought about having DH read my blog but I think he’d still see it as me giving up.  I wish I could make him understand but every time one of us brings up the subject we both fight.  He talks a lot about whether my EDS causes me pain or not.  He thinks my pain is just fibro pain.  I’ve tried telling him that fibro and EDS cause the constant, unrelenting pain.  I’m not sure if fibro or EDS cause the worst of my pain, but I do feel it’s likely that they work together to cause it.

I’ve been so lonely lately.  I can’t talk to my friends online because I have no internet. (I’m typing this in Word to put into my blog when I can get online.)  I can’t hear from my pen pals because I can’t mail the response letters I’ve written because we don’t have the money for postage.  I feel so very alone.  I’ve been watching some movies and trying to lose myself in books.  It only works some of the time.

Tuesday, October 26, 2010

Scared

I have so incredibly much going through my head right now that I need to write out my thoughts to organize them.  I'm in the waiting room in the middle of the night in Springfield where my mother-in-law is in the hospital.  They don't know if she will make it.  Jim wants to take care of his mom and brother.  I care about them, but my first priority is Jim.  So many crazy things are running through my head, just the stupidest things.  For instance Jim wants his brother to live with us for awhile if their mom doesn't pull through.  Isn't "pull through" a nasty term?  I couldn't think of a better one.  "Passing away" sounds bad, but "dying" is the worst word.  Things are flying in and out of my head so fast.  Like, if Jim's brother comes to live with us for awhile will he be offended by my books on Wicca?  I know he's a strong Christian.  I'm still Agnostic, I'm not ready to identify with any religion yet.  Why is this going through my head?  Why at a time like this am I fixating on my Wiccan books?  There is so, so much to worry about and it's like my brain worked only for so long then it got hung up.  Do I have to pretend to be Christian if he is there?  What is my fucking deal?  I feel like screaming.  Too much is happening too fast.  It's more than I can take but I have to be strong for Jim.  I'm only a few days out of a very bad flare and I'm afraid I'll be back in it.  I'm no help to anyone when I'm not able to move and sobbing.  I'm trying deep breathing but then I notice my stomach rumbling.  Everything is happening too much too fast.  I don't know what to do.  I don't know how to make it better.  The only thing keeping me sane is knowing that prayers are going out.  I'm Agnostic, not Atheist, and I do believe very much in the power of prayer no matter the deity if it is said with a sincere heart and good intent.  What do I do?

Thursday, October 21, 2010

The Squatters Are Gone! We had to pay them to leave our house

Written on:

Wednesday, October 06, 2010
8:30 pm

They are gone.  I repeat, the squatters are gone!  Yay, this was an exciting moment for us!  We were finally together again, just the four of us.  We had to pay them $80 for them to leave our house.  I think it is insane that we had to pay someone money so they will leave our house, but getting the three of them out was worth it!

They left Sunday (I’m writing this on the following Wednesday).  I thought Monday morning I’d wake up in the best mood ever and the day would be great.  Instead I woke up nervous, jumpy, and depressed, with a deep unsettling feeling in the pit of my stomach.  In the morning DH and I had an excellent talk about religion, but toward the end of it I couldn’t concentrate anymore.  I spent most of the day crying, very depressed, shaking, throwing up, and in the bathroom.  Oh, and let’s add flashbacks to my list of yuckies for the day.  My nerve pain was especially bad that day, too.

At the end of the day, around midnight, Jim found my medicine that I thought I took that morning.  So I hadn’t had any medicine at all for at least 24 hours.  It helped me to know I wasn’t losing my mind, though.  I take between 31 and 33 pills a day, depending on my pain levels.  Missing all those meds will drive a person insane!  Then around 10 pm I started seeing holes in my vision but didn’t know if it was a seizure aura or migraine aura.  I didn’t have long to wait to find out.  The right side of my head exploded in pain.  It was there about eight hours.  I had ice on my head and put my stuffed bunny, Bonny Bunny, on top of my eyes to block out the light.  Anyone who has had a true migraine understands the light sensitivity that is so acute I swear I could see light that was in the bedroom three days ago.  I didn’t have my eye mask either, which made it worse.  The night before I accidently dropped it in the toilet.  I figured as much bleach as I’d use on it, assuming it held together, would leave a permanent bleach smell that would really hurt my eyes so I threw it away.

The next day, Tuesday, was a great low pain day for me.  I slept a lot that day, too.  Today I slept a lot as well.  I feel so exhausted, I think coming down from the stress is exhausting in and of itself.  Today has been a bad pain day for both of us.  DH had to go to the ER again because he broke off a huge hunk of another tooth.  His face is swelled up huge.  The ER doc gave him a heavy dose of antibiotics for the abscessed tooth.  My ankles aren’t being nice today and my right knee subluxated in the ER room DH was in.  It hurt like hell, I don’t know if you ever get used to it or not.  I don’t think I will, or at least not for quite awhile.

Wednesday, September 22, 2010

Unbelievable events when trying to get "houseguests" out

Well, here is the update from talking to them.  It did not go good.  In fact I can barely imagine it going any worst.  Tiffany got very, very, very angry and started yelling at the top of her lungs at DH.  Mind you, this is all on the front porch where neighbors could hear.  Then DH got mad at started yelling back.  I walked out there and told them they had four fucking weeks to find a place to live.  Mind you, my therapist and Jim's therapist said they need to get out for our mental health.  Then Tiffany started screaming about how fucked up I was for SI (self-injury).  How on earth she knew about it I don't know.  I am just coming forth with this big, shameful secret I've carried with me for so long.  DH and Tiffany were screaming and I added some yells in there, too.  The only person who never yelled was Derick.  (I'm not sure if that is how he spells his name.)  Then Tiffany started screaming about how fucked up and mentally ill and crazy I am.  That hurt so deeply, so did her making fun of SI, which I've struggled with for so long.  SI can become an addiction for some people, and I am one of those people.  Then Tiffany called the police on us for trying to throw her out.  DH had told them before they called the police that they better get out now, rather than Friday.  DH was packing up their groceries for them.  Then two police cars came.  They told us that if we want them to leave we have to to before a judge and get them evicted because they are considered residents if they live there for over a week.  We had no idea about this Missouri law.  If we take them to court our landlord will find out and we will be evicted along with our two babies, our kitties Sterling and Niki.  We don't want to be homeless!  So we can't take them to court.  I went into the bedroom where I tried to calm down  because I couldn't stop crying.  I don't like people to see me cry.  So after a bit I decided to try to make peace and went outside on the steps and told them that I was sorry for saying I wanted them out since day one.  I kinda did mean it, but I told them I didn't and said it out of anger and I was sorry.  Derick said okay, but then Tiffany started jumping my ass for how dare I say that.  I apologized three times before I gave up and went back into the house while she was still screaming at me.  I went inside and put their frozen foods up that Jim got out and put into a bag when we were trying to kick them out.  I didn't want their food to spoil.  So then I went back to the bedroom because I started crying again.  While there I had bad flashbacks about my dad.  I cried and cried and once again I was weak and stupid and did SI.  Then I took a hot shower so that I could think and relax.  DH came into the bathroom while I was in the shower and said he had to go over to someone's house for a bit.  He told Derick that I'm afraid of Tiffany; she could so kick my ass and she is violent.  So while Jim left Derick stayed here so that she wouldn't be alone with me.  I truly am scared of her.  I hate living with someone I'm scared of.  Derick said he will try to get the situation fixed as soon as possible.  Derick is a pretty nice guy.  He's mellow, really smart, and overall a nice guy.  Tiffany I can't stand and am scared of. I still want them out.  I want them out so bad.  Now we have no way of getting them out since we can't go to court over it.  Why would someone want to live somewhere where they really aren't wanted?

The explanation of my current stress and horrible "house guests"


You don’t realize how much you depend on the Internet and TV for entertainment. The loss of Internet meant the most to me. I'm so glad it's back on, though we still don't have cable TV. Admittedly, I do not have many friends and I cannot leave the house very often from pain. The Internet and pen pals are my ways of connecting with the outside world. My most visited sites, other than gmail, are Twitter and Facebook. On Twitter I have “tweeps” from all corners of the world that I tweet back and forth with. I think most people I follow are spoonies, feminists, Pagans, and LGBTQI peoples. On Facebook most of my friends are EDSers, fibromites, and people from C-PTSD groups. I also get to “see” my friends who aren’t spoonies. I was so afraid that the friends I’ve made online would have moved on and forgotten me by the time I get the Internet back. I really missed them, I really missed you all! 

We’ve had people staying at our house all summer long. The car has also been broken down all summer, too. First we had Brandon stay two and a half weeks. I would have turned him out after one night but DH is worried about being mean. I don’t think I’m mean. I have had people step on me all my life with shitty shoes; I do not want to be taken advantage of anymore. So Brandon, like I said, stayed two and a half very, very long weeks. The situation wasn’t made better by the fact that I cannot stand Brandon for too many reasons to list. Among those reasons would be taking advantage of DH’s and mine hospitality. While I was never mean to Brandon I didn’t hide the fact that I don’t like him. One reason I don’t like him is because DH heard Brandon say more than once he thinks this 14 year old girl across the street is “fucking hot,” and he’d like to “fuck her.” Brandon is not a teenager, he’s 21 years old. His most recent girlfriend is 16. I consider 16 child molesting and definitely consider a 21 year old man wanting to have sex with a 14 year old not only wrong, but it is child molesting. I wouldn’t be surprised if Brandon actually molested a little girl someday, if you don't count the 16 year old. He even says that stuff when watching TV and a young teen girl comes on. Apparently he doesn’t realize that he is sick and disgusting. If he asks me though, I’ll be happy to tell him he’s a sick child molester in training, if not already molesting young girls.

So after two and a half weeks of hell, in which I told my DH, every night I wanted him out; someone else came along to take advantage of DH’s kindness. Tiffany and Derick and their son Dawlton came one night saying they had no place to go. Let me make this point clear…I only agreed to this because they have a 3 year old boy. Well, they asked to stay one night. The one night turned into them wanting to stay until the 4th, when their TANF check would come in. For those of you who don’t know what TANF is, it is emergency government aid for families. Well DH talked me into letting them stay until the 4th of September, though I really didn’t want to let them. The reason I didn’t care about them going is I found out that Tiffany’s mother takes care of Dawlton all the time. So the child had a place to go after all.


Well the 4th came and went and they swore they never got the check. Considering the day I write this is September 22nd and they never talk about how they “never got the check” anymore. Maybe they realized their lies are so obviously lies that they no longer say them. I don’t know. I just want them out. They swore they’d look for jobs once and a place to live. Yeah…whatever.

They looked for jobs and a place to live for one day; it was Friday, September 3rd. I remember because I was getting excited to have my house back again. Surprisingly they didn’t find a job and place to live on that one day. I know, it’s shocking isn’t it? It “grinds my gears,” as Peter Griffin says, that they never knock, just come right in. I told them a few days ago and so did DH to stop that. Now they do one quick knock and open the door immediately.

I know I’m not a mother, and I know it’s not nice to judge someone, but Tiffany is a bad mother. She lets Dawlton spank her and hit her. Yes, I am serious. He also screams nonstop unless he is asleep. Dawlton is 3 years old. He’s also never been taught manners at all. You can barely understand him talking, he doesn’t know his colors, shapes, or alphabet, he is completely unfamiliar with manners, he thinks it is not only okay to hit, but it’s funny. He keeps stealing our kitty’s toys, too. He almost poked Niki in the eye with her favorite toy. After that I went and hid all of the toys I thought he may hurt my cat with. If he poked my cat’s eye out I totally claim no responsibility for what I do to Tiffany. I can just say that Tiffany would be in bad shape. It hurts to get knocked in the head by a spoonie’s cane. I’m non-violent, but hurt my DH or our kitties and all that flows out the window. As far as I’m concerned my family comes first always. If you hurt someone my family…well watch out…seriously.

I kicked them out a week and a half ago, but DH came in after me and told them they could stay because Tiffany was crying. That was the night when Tiffany and Derick tried to kill each other. They were on the front porch and she punched him then he punched her. Then they were on the ground, him strangling her and she was landing punches in his pace. She’s a big girl, too, with a slightly masculine build. She weighs more that Derick and I wouldn’t be surprised if those punches gave him a headache for awhile. It was drama, drama, drama and my flashbacks increased dramatically after that and so did DH's seizures.

The other day Tiffany and Dawlton spilled what must have been half a gallon of Kool-aid in the fridge and all over the rug. Did she clean it up? Nope, it’s still there. She just said “Oh well, it isn’t like the carpet isn’t ruined anyway.” Then she left it there! It’s all in the fridge and all over a large section on the floor in front of the fridge. Today I guess I have to go and clean out the fridge and scrub the Kool-aid stains before it sets, if it hasn’t already.

When I got out of my parent’s abusive control of my life I wanted to decorate my new apartment in something pretty, something me, something that represented my personal tastes. I ordered over $100 of prints of paintings and pictures of Hadrian’s Wall and a Scottish castle. I also got a Picasso print and I already had a Van Gogh print. Then I got two Waterhouse pictures. The picture of The Lady of Shallot I brought in and laid on the dryer. We are bringing stuff out of the garage because we haven’t decorated the walls yet and I want to. So, I laid it there. Well guess what Tiffany did? She washed towels, she even told me about that. I appreciated that. However instead of drying them she just threw a bunch of wet towels on the dryer on top of a whole bunch of stuff I recently brought in. As you probably guessed by now, the next day I lifted a heavy bundle of wet towels to see what she put them on top of. Of course what is lying under those towels? My framed Waterhouse print was lying under the heavy bundle of wet towels. I was furious but didn’t say anything to her at the moment. I did the other day, though. She denied it of course, just like she denied the Kool-aid incident. I hate it when people lie!

A couple days ago I decided I could no longer stand being around them. I spent the entire day in DH’s and mine bedroom. I was going to do that every day but DH convinced me that I need to be in the living room when I want because it is my own damn house. I should not have to hide in my room in my own damn house! That is what I had to do when I lived with my mom and when I lived with my sister. I hid in my room all the time to avoid the verbal and emotional abuse. No one ever physically abused me in the house I lived in with my sister. I can’t say the same for my mom’s. I would eat in my room, exercise in my room by doing squats, push-ups, crunches, and a bunch of variations on those. I also got my aerobic exercise in my room by turning on my stereo and running in place for awhile while alternating with calisthenics. I would journal, cry, have undiagnosed (at the time) seizures alone in my room, and when I had to smile I would go in my room. If I laughed or smiled my mom would plow me over with heavy psychotropic meds because only manic people smile, right?

I almost forgot. They screwed up their car, so they borrowed DH’s van. DH sometimes is too trusting. I love him so much but I just am out of patience with these people, and I don’t like people taking advantage of a really good person. So while borrowing DH’s van they ran it out of gas then busted up the thing that connects to the flywheel by trying to start it real hard over and over after it ran out of gas. They also ran the new battery dead by doing that. So DH walks the five blocks to his van a few times a day, trying to get it running enough to get it home. He’s even had to carry a heavy battery the five blocks there, then find out it didn’t fit and had to walk the five blocks back home with it. It might be cheaper to get the car running again, which has been broken all summer. DH has been walking everywhere, too. We are in such a scary financial situation. We had so many unexpected expenses in the last year. It is just really scary. I mean we actually had to go to a soup kitchen to get peanut butter and jelly sandwiches a few weeks ago so we could eat. That was when Brandon was here. He ate two of our soup kitchen sandwiches, too. He had no problem buying alcohol, which he had to drink elsewhere and not come in drunk. Neither of us can stand drunks, they are just disgusting pigs. Sorry to any binge drinkers reading this, but in my experience drunk people are usually at their worst and it is just plain disgusting the way drunk people act and smell. When alcohol makes your own friend want to kick your ass and she's much, much bigger than you and knows how to fight it makes you really not like drunk people.

Today we went to my therapist's office, DH came in with me. My therapist helped us come up with a way to throw them out. They will have until Friday to get their asses out. They've been here over a month and if the landlady found out we'd be in a world of trouble. At 5:30 pm DH and I want to sit them down and tell them they have until Friday. My therapist said that we don't need to give long explanations. We're nervous about the talk, but I think DH is a bit more nervous than me.

I think that about catches everyone up. I am growing more and more unhappy. I am dissociating for hours a time. I have at 20-30 flashbacks a day. I sleep when I can because I can escape into the murky world of my nightmares. I stay up most the night reading because it is finally quiet and I can enjoy that. I also love having DH in bed with me snuggling while he sleeps and I read. I’m depressed and I’m starting to get anxiety attacks when I haven’t had them in a long time, not since I started meditating and deep breathing exercises. DH’s seizures have increased fivefold from the stress. I even started SI (self-injury) again, so I'm really, really disappointed with myself. I feel like such a freak when it happens. It is something I struggle with on a daily basis since I was 14. It is something shrouded in shame, and that's how I feel when I screw up and SI again. I feel like a shamed loser and I hate myself for subcoming to it. I know it’s common in people with PTSD (Post Traumatic Stress Disorder), and especially in cases of C-PTSD. C-PTSD is Complex-PTSD, it comes for long term years of abuse. I’ve been abused verbally, emotionally, physically, and sexually in my life.

Why are the "guests" still here? I keep wondering that. For the past week and a half we went to bed with both of us saying that we want them out. Then why aren’t they out? I'm kinda looking forward to 5:30. I'm a bit scared of Tiffany she's a big girl and if she got violent she could really do damage. DH said nobody better lay a hand on me. We have a friend, Brad, coming over on Friday so maybe with more people here there won't be any violence. I'm a bit scared about that. I know Tiffany can be violent.

DH thinks that we need to handle the situation delicately. I don’t. I just wanna walk into the room and tell them to get out soon. I want them out in the next 24 hours, but we are giving them until Friday. They haven't looked for a place to stay, except for that one day. So am I bothered by throwing them out? No. They have had plenty of time to find a place to live a hunt for a job. If they were actually really looking for jobs and a place to live I wouldn’t be so angry. They are just taking advantage of us. I want them out so bad!

I'll blog a (hopefully shorter) blog after 5:30 and after we get them to leave on Friday to let you all know what is going on. Sorry this one is so long and thanks for reading it.

Monday, September 13, 2010

Did it happen or not?

Jim thinks I did not have a mini-stroke.  The doctor did not testing, he just gave me a short physical exam, which went normal.  I think it isn't impossible I had the mini-stroke because I have PCOS and was on birth control pills.  With careful consideration I have come to the conclusion that I probably didn't have a mini-stroke, but instead had a strange seizure, unlike ones I'm ever had before.  I could only walk one way as one side of my body couldn't lead me anywhere.  I drug my foot and had to have Jim actually turn me around so I could get into the house.  I almost went out in the road like that.  I know that the one side of body deal does point to it, but I don't know for sure.  I just think I'll take a low dose aspirin daily after all, just in case.

I don't think I'm worried too much, I just want to get everything straight and if it was one then to prevent a massive stroke.

Wednesday, August 18, 2010

Another long day at University hospital with good news

This blog is cross-posted at one of my other blogs Please Tape Me Back Together, my blog on Ehlers-Danlos Syndrome.

I went for the Tilt Table Test (TTT) last Friday but have been suffering from really bad writer's block for most of the past few weeks.

We caught the Medicaid Transport van at 5:00 am.  (Yes, I just said wrote 5:00 am!)  I am not a morning person so this was really hard to accomplish!  I had three hours of sleep the night before.  My TTT was scheduled for 7:00, the echocardiogram for 10:30 am, and the cardiologist for 1:20 pm.  After hobbling down the hallway on my cane we discovered that we had arrived shortly before the Cardiology Diagnostics department opened.  Fortunately we did not have a long wait.
I was the only one with a cardio diagnostic test scheduled for the morning.  I think that one of the ladies who did my TTT was really glad to have a slow morning after her really busy day the day before.  They said that since the morning was open for them that they would go ahead and do my echocardiogram right afterwards.

Once I got back in the room they did a quick history and went over the potential side effects of the TTT.  After that I had to change into a hospital gown above the waist so they could get the stickers on.  Once the EKG was hooked up, an automatic BP cuff was on my left arm, a manual BP cuff on my right arm, and I was strapped tightly to the table we were ready.  I was really afraid that I'd freak out strapped down because of all the things I've seen in our shitty mental health system.  I was scared, but it wasn't long and my mind was overwhelmed with the incredible pain of standing.  The test was 45 minutes long or until you faint.  I had to have them stop it early because I had searing pain shooting down my legs and, of course, a high level of pain everywhere else, too.  I was incredibly embarrassed that I can't stand up that long without crying from pain.  The techs never made me feel bad, but I still am ashamed I cannot stand for 45 minutes and I'm only 29.  I'm not even 30 yet.  By the time they did the echocardiogram, or ultrasound of the heart, I was crying in pain.  I don't know if they saw it but I know they heard me crying out everytime I was touched.  As anyone who has had an ultrasound done will tell you; the tech pushes hard on your body to get good pictures.

In between the two tests they went and got Jim in the waiting room to tell them my un-official result of the TTT.  I was very pleased to know that the un-official results were negative for any dysautonomia.  Yay!

When they had completed both tests they got me a wheelchair (by then I couldn't walk) and Jim wheeled me to the Cardiology department from the diagnostics department.  By this time my pain was a 9 out of 10 and there was no way I wanted to stay for the afternoon appointment.  I was too exhausted and in way too much pain.  So we rescheduled with my cardiologist, Dr. Z.

We went to the lobby of hospital and called the Medicaid Transport van.  He agreed to pick us up after picking up the woman he was waiting on.  He said he'd be there within an hour.  We went outside to wait.  Jim pushed the wheelchair down the hill, across the street, and under some trees so he could smoke a cigarette.  I got out my water and a Diet Pepsi and drank that.  We both ate a snack that I'd packed and Jim went back across the street to take pictures of the hospital for my blog.  I'd tried getting the pictures myself, but I couldn't.  So the lovely pictures here are thanks to my honey.  An hour and a half after we called Medicaid Transport they showed up to take us home.  After we got home I slept four or five hours without waking up once.

Monday, August 2, 2010

Saw the cardiologist

This blog is cross-posted at one of my other blogs Please Tape Me Back Together, my blog on Ehlers-Danlos Syndrome.

This blog is a bit overdue.  I saw the cardiologist in Columbia, Missouri at University Hospital.  I took a picture of the rug at the entrance because it was the only place that I could find the whole title of the place.

So we did make it past the rug to the cardiologist's office. lol  I didn't have to wait long in the waiting room but had to wake a bit in the examining room.  Jim stayed with me almost the whole time.  Dr. Z was a young woman, only 30 or so.  Since I'm 29 I did wonder; if I had lived my life better would that be me as the doctor?

Dr. Z was very nice.  She was familiar with EDS (amazing!) and agreed to do a Tilt Table Test (TTT) and an echocardiogram.  She explained that an echocardiogram is an ultrasound of the heart.  The TTT will be testing for Dysautonomia and the echo will be testing for Mitral Valve Prolapse, and I guess any other funky stuff.

After Dr. Z finished with me she called in the doctor above her to see me.  He walked in and I could tell he was happy to meet someone with EDS.  He asked me how I know so much about it.   He said that I knew more about EDS than he did, then he asked if I was a professional in the medical field!  I was so surprised and excited.  Of course I told him how I wasn't a medical expert but am doing my best to know all I can about EDS.  Well I tried using those words; I'm afraid that I was so excited everything came out wrong.  

We'd taken the Medicaid bus to get there and back.  It was a loooong day!  I went home and slept for four hours and Jim and I went to bed early.  With the fibromyalgia, low thyroid, and EDS, I get tired out very easily.  For those who are reading this and don't have these or other medical problems I want to point out there is a difference in being lazy and having multiple chronic illnesses. 

Which reminds me, I need to get paperwork mailed to me to get my blood work done from the same place for my endocrinologist.  He's a great guy and I am going to ask him about the lump on the side of my skull.  It is probably no big deal, but my mom had Castleman's Disease and I am pretty sure that hard lump used to be a lymph node.  I have no idea if Castleman's Disease is hereditary though.  Either way an endocrinologist should know if something is wrong.  I've had it for 4 or 5 years so it isn't killing me or anything, but it is still good to know what it is, right?  

My TTT, echo, and follow-up are all on the sameday, which is good.  This month I have the EDS doctor in St. Louis, MO.  I'm excited/nervous!  I have no idea HOW we are getting to St. Louis, and that is where most of the stress lies.

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