Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Sunday, February 27, 2011

Oh, the toe drama!

Things seemed to have settled down at our house lately, which is a very good thing.  I hate yelling and screaming, like I've mentioned before, it sends me into flashbacks.  It also scares the cats.  My in-laws have been quieter today, so today has been a bit more relaxed than yesterday.  I've been in extra pain for two days.  I'm not in a flare, just in extra pain.  I find myself watching a TV show on the computer and thinking "God!  He's gonna dislocate his shoulder if he does that," before I remember that most people don't have to worry about that.  I still haven't figured out how to get my toes back in socket when they dislocate at the joint closest to my foot.  I dislocated a toe last night there, then when I tried putting it back in I dislocated the second toe joint in the same toe.  I finally got that one back in by myself, but had to wait for DH to come in and get it back in.  So I sat on the bed occasionally yelling his name out for him to hear me in the back room.  I was careful to not yell too loud, which is probably why he never did hear me.  Damn toes, stay in!

At least my toes aren't this evil!

Thursday, February 24, 2011


Toes.  Yes, toes.  I've been dislocating my toes on a daily basis.  I tried sitting down for a serious talk with my toes, but you know how toes and their smart mouths can be.  We didn't get anything done and they are still dislocating.
Don't believe this smile, I bet these toes are as smart mouthed as mine!
I even have to get up now in the night to put my toes back in.  Wow.  I feel like I'm Alice in Wonderland and I'm falling down a dark tunnel called "Life with EDS."  There is nothing to grab onto and I keep falling in the deep dark abyss until the demon called EDS morphs me until all my joints will start dislocating.  A year ago, just after being diagnosed with EDS, I listened to a YouTube video in which the "star" mentioned getting up all night to put dislocated joints back into place.  I couldn't imagine my EDS ever being that bad, and I was pretty sure it wouldn 't be.  Someone who dislocates large joints on a regular basis may find my blog entry about toe dislocations whiny and stupid.  I am not being whiny though, I'm being scared.  I don't know what to do.  Can I inject my toes with super glue?  I really think that would work for small joints.  I don't care if I lose some mobility as long as I can keep the joint in place.  I know it sounds silly, but I feel like I may be onto something.  I am really, really scared and without my very best friend Vanessa I would have lost my mind by now.  She doesn't realize how brave she is.  I hope she will someday.  I cannot express how scared I am without crying hard, as it is I'm crying already.  What will happen to me?  Will I start dislocating large joints?  Can I stop it from happening?  It seems everything I learn about EDS is bad stuff.  I hate having EDS but, I try to look to the positive.  I can say that I never would have met Vanessa and my other Twitter & FB friends otherwise and I think having EDS will make me stronger in the long run.  I just don't feel very strong right now.

Thursday, February 17, 2011

Frustration & scheduled PT eval

I've made a discovery about my health.  I think I've mentioned a few times that I have a hard time peeing and keeping the flow going.  It takes a long time in the bathroom just to pee.  Today I decided to try peeing in a different position.  I leaned forward between my legs and could easily pee!  I sat back up again and my flow stopped.  I leaned over again and wa-lah! I can pee again.  I'm not sure what that means, but at least I will be able to pee a lot easier now.

It's weird because I have friends on FB who dislocate major joints but still have an active life outside the home, and then there is me, who is nearly housebound with pain.  Of course, I don't take any narcotics, either.  I'm not saying that all active EDSers take narcotics, I know that they don't.  I just meant that having less pain would make it easier to go out.  I want to try a no more pill approach with reflexology, massage, reiki, and acupuncture (the electric kind that has no needles).  Of course since Medicare and Medicaid pay for NONE of these treatments I have to keep on dreaming.  Sigh!

I also did something awesome today that I'm proud of.  While I used to be able to run a couple miles a day, now that I'm badly disabled and can barely walk at all my goals have changed.  Today I walk 30 yards without a cane.  I was (and still am) very excited about this.  I am hurting bad from it now.  This is my first day out of a flare and I hope that walking today won't cause one.

I'm still having lots and lots of neck pain, though I am starting to get so used to headaches I don't notice them if they are low grade.  Of course, I am very aware of a medium grade headache, high grade headache, or migraine.  I added more to my Chiari page.  I added stuff about Tethered Cord Syndrome and a little more about Chiari because a lot of Chiarians also have Tethered Cord.  Remember, I do not have all the illnesses I am doing pages on (thank god!), I have H-EDS, Fibromyalgia, & CMP.  I suspect Chiari or CCI, but I do not have that diagnosis right now.  I have yet to be evaluated for either.  My hopes for this blog is that the readership will grow and other people (specifically EDSers) will have a place to learn about EDS and related health conditions all in one place.  Of course having any non-EDSers reading this blog is, too.  I hope to have my blog pages as a knowledge source for everyone.

I want to get a heating pad as soon as I can.  I have a $50 gift card from Target I'm getting from a survey site that really works (I've been doing it for years).  I still have more surveys to fill out first.  When I get my gift card, though, I plan on getting some heating pads online.  We don't have a Target in my town.

I scheduled my PT evaluation.  I want to find the right material to give to the physical therapists.  I hope I get to do pool therapy again.  Last time they said I only needed 30 days of physical therapy.  They canceled once because of a thunderstorm.   It's an indoor heated pool but for liability reasons the hospital doesn't do pool therapy when it is thundering.  We also had Thanksgiving that month plus I was too sick to go twice.  That meant of the 30 days (eight appointments) they scheduled me for I got four.  

I am really freakin' frustrated that my doctor refuses to admit how much EDS effects my life.  She still thinks fibro is my main problem.  This is my rheumy I'm talking about.  The geneticist diagnosed me as "HMS or EDS hypermobility type."  To her this means HMS.  She doesn't realize that HMS and EDS are the same thing.  I have a lot of "normal" EDS symptoms.  Writing EDS on my medical records will get me to services and stuff that I won't be able to with the HMS label.  I see Dr. W. in St. Louis next month and she will be giving me an official EDS dx.  My rheumy also don't realize how much my EDS hurts.  I think even DH doesn't realize the extent of how much it effects my life.  It effects it in many ways, not just pain and unstable joints, though that is a really, really big part of it.  I don't think he really truly understands what EDS does to someone's body.  I know he couldn't because I learn every day about it and still don't know it all.  He doesn't belong to a bunch of EDS groups, like me, so no way could he know it all.  That's understandable.  He isn't an EDS researcher or even a doctor (though he is smart enough).  I do wish that DH learn more about EDS.  It may seem like I complain a lot, but no one knows how often I cry in pain, or how picking up the milk jug subluxates my wrists somedays.  I know that I cry a lot and I sure feel like I complain a lot.  I feel lucky that my wrists don't dislocate (yet), or any major joints, and I'm scared of when it starts happening.  So far I've only dislocated a finger, the tip of my thumb, a small bone in my foot (both sides), and...I think that's it.  I've subluxated many,  many joints on a daily basis.  I subluxate more all the time and I only started dislocating in the past year.  It scares me.  Does that make me wimpy?

Saturday, February 12, 2011

Where did my healthiness go...and my sanity?

I've been trying to make one information page a day until I finish the 10 info pages on Please Tape Me Back Together and then I want to start doing one page a day on Smart Fibro Chick, my fibromyalgia blog.  Today I finished my page on Cervical Cranial Instability (CCI).  Please check it out and let me know what you think.  My brother-in-law #1 has put out a lot of prayer requests for my facebook friend J., who will be having surgery this week for Chiari, CCI, and a few other things, from what I understand.  She's a really brave lady, but I'd be lying if I said I haven't cried a couple of times worrying about her.  I have been praying for her, too.  I don't know if I'd ever be brave enough to even have finger surgery.  I don't think I'm a very brave person at all.  Dammit, now I'm crying again!I feel so scared so often, so very often.  I feel like I'm alone and teetering on the edge of a cliff with my health and often, my sanity, and there is a rope only an inch about my grasp.  When a rope is an inch about your grasp it might as well be three feet, because you can't reach it either way.  I'm scared to death but I try to act like I'm not.  I'm not a very good actor, either.  I wonder if everyone who looks at me can see the thoughts whirling in my head?  These scary thoughts feel as if they are thick, purple, gritty, and like a hurricane of quick sand.  Describing thoughts and feelings in a visual and tactile way is what I had to do in EMDR therapy for my PTSD a few years ago.  EMDR didn't work, instead it gave me a headache, so I quit going at the end of that summer.  I find that it does sometimes help to confine feelings to visual and tactile qualities, though.

Friday, February 11, 2011

Alone and scared inside

Sometimes I'm so scared.  I feel like telling everyone don't you understand?  I feel like screaming don't you all understand how scared I am?  What do I do while my body falls apart?  What do I do when I know something is really wrong, but I don't know what?  What do I do while my friends are falling apart and in surgery after surgery?  What do I do when I'm so scared?

Wednesday, February 9, 2011

Before bed

I just wanted to make a quick entry before I go to bed.  I spent a lazy winter day watching youtube videos, reading blogs, and writing on my Dysautonomia page on this blog.  I've been having such a bad time with bruxism lately that just touching my face hurts.  I don't grind my teeth, I clench my teeth really, really hard.  I wear a night guard that I bought at Wal-Mart, but it dries out my mouth really bad and I wake up feeling like I'm choking, yet somehow, still drooling.  I got some free small mouth guards in the mail as free samples, they are disposable after three nights.  I am going to try it tonight and if I like it I'll probably get more than three nights out of it.  The only reason I can think of that you wouldn't be able to get longer would be if you had vampire teeth.  Vampire teeth you ask?  Yes vampire teeth.  I'm reading mind is already on the book and has left the blog now...

Monday, February 7, 2011

I had a dream I fell apart...oops that was real!

I had a dream that my body was falling apart.  I had dreams that are true to life!  I honestly think I have Chiari issues or something along those lines...cranial settling, cranial instability, tethered cord...something is going on and I don't know what it is.  I don't know if it is one something or more than one something, but there is definitely something going on.  I have horrible headaches that start when I lift my head off the pillow and only go away when I lay down on one pillow.  The pain decreases sometimes on two pillows, but not always.  I have heartburn that only goes away when I lay down, too.  I can't pee, I've had horrible constipation and recently started tinkling when I laugh.  How weird is that?  I can't pee when I want to but tinkle when I don't want to.  I don't know whether this is a pelvic problem or related to a neuro problem.  I don't know what doctor to see, I don't know what to do, and I am confused as to what the next step is.  I really hate EDS, but I'm trying to look at the silver lining of the raincloud.  I am thankful for my friends I've made that are fellow EDSers/zebras/bendies.  

I have a lot to do today.  First I need to call the cardiologist.  I keep missing the appointments with her.  She's really nice.  She's at University Hospital so there are also other doctors around with more experience.  She brought another doctor (I think the doctor above her in hierarchy) to meet me because I have EDS.  The other doctor was so surprised at my knowledge about EDS.  He admitted I knew way more about EDS than him and he asked if I was a medical professional.  I was excited that a doctor not only listened to me, but brought in another doctor who also listened to me and then gave me credit for the knowledge I have about EDS.  The only other doctor I've had that has been that awesome about EDS is my gynecologist, who also first noticed Reynaud's when my feet were gray, cold, and had a loss of sensation.  He actually noticed it before me, because, like I said, I had a lack of sensation.  It wasn't the first time it happened, of course, but it was the first time a doctor paid attention to it.  The second rheumy I saw (I only saw him once) made a comment about how my pupils are different sizes but never looked into it.  I know a rheumotologist wouldn't deal with that issue, but I think as a doctor who noticed it he should have either referred me to a neurologist who wasn't an idiot (like mine) or told me to see my idiot neuro and tell him about it.

I might have to leave the house today, which I am really not looking forward to.  I am nearly housebound now, and leaving the house usually means I have to recuperate for the next two or three pain filled days.  Ugh, I just realized that I haven't taken my meds yet and it's nearly one o'clock!  Even with the easy open tops it is very hard to open medicine bottles.  I have taken some Bayer Aspirin already, though.

My morning routine consists of reading a little, getting dressed, making some green tea, sitting down at the computer to check my email, opening a Bayer Aspirin Quick Release Crystals packet for the headache I got when I got up off the pillow, drinking a diet soda (when we have it), making more green tea, sometimes eating breakfast (depending if we have food in the house), taking my meds, brushing my hair, checking Sponsored Tweets (I've made $34 so far by tweeting), checking Twitter, checking on Facebook, then wishing I were back in bed and wondering why I bothered to get up this morning.

Right now I'm trying to do a educational pages on EDS and EDS related topics on this blog.  The one I started on was Chiari.  Tell me what you think of my page on Chiari.  It's still a work in progress, and I haven't really started on any of the other pages yet.  The order I was putting the pages in got all messed up, so don't pay attention to the strange order!

Thursday, February 3, 2011

Dislocations, anxiety...and am I a wimpy EDSer?

When my ankles first started subluxating bad enough hat I couldn't walk from where I was and I couldn't get them back in myself, I started going through a lot of anxiety.  If DH isn't home then what do I do?  I'd have to sit there waiting for him to come home so that he can get my put my ankles back where they are supposed to be.  I had a complete dislocation at my knuckle of my ring finger the other day.  I couldn't get it in myself, in fact I couldn't look at it for long because it made me quite nauseas.  DH looked up on the internet how to put a finger back in.  So far my only finger dislocations have been the first joint toward the end of the finger.  They were easy to get back in.  This time my finger came out when I was trying to make the Vulcan sign.  Ah, just another reason why Star Wars is better than Star Trek!  lol  DH put my finger back in while I turned my head and then he described what he did afterwards.  What kind of EDSer am I?  I not only can't get my joints back in but seeing one out makes me want to throw up!  I don't know if all EDSers feel that way at first or not.  I'm really worried about the time when large joints start dislocating.  My small joints are doing it now.  A year ago I occasionally had a small joint subluxate.  Now I have them dislocating and large joints are subluxating.  Why is it speeding up so fast?  I really want to get into my PT program (I am supposed to do hydrotherapy) but I want to wait until the blizzards are over.  Last time they said I only needed 30 days of PT and if they canceled on me or if I moved my appointment because I was in a flare then it still only counts as 30 days.  At the end of those 30 days you are cut off from PT.  From what the doctor said, most PT office's don't do things that way.  I do kinda wonder at the assessment they gave me...30 days?  I mean come on!

Tuesday, February 1, 2011

EDS Babies III

This is sort of a multi-part entry called "EDS Babies."  "EDS Babies?" is located here and "EDS Babies II" is located here.  When I talk about the EDS Babies series of entries I am referring to my future pregnancy and the possibility of our future children having EDS.

So, once I get that out of the way I want to share a picture I made the other day.  I spent a long time on it and call it "Babies on the Brain."

"Babies on the Brain"
I also made a drawing of our bedroom and how we would change it to accommodate a much wanted addition to our family.  I know that first we have to get my health under control before we start trying to get pregnant.  We also have to get our finances under control.  After that...who knows.  I hope to be a Mommy in the next couple of years.  I don't know what I'd do otherwise.  I will talk to Dr. W., the geneticist who specializes in Connective Tissue Diseases, in St. Louis about having children.  My rescheduled (yes, again) appointment is in March.  I've had quite a few EDSers tell me that their geneticist told them not to have children, but I think that those are mostly people with vascular type.  A few who told me that had a bad case of classical type.  I have hypermobility type and do not expect my diagnosis to be changed when I see the geneticist.  I have quite a few friends who have H-EDS or C-EDS (and even some with V-EDS) who have had children and are just fine.

I've been reading a lot about relaxin.  From what I understand it is a hormone that is released in a woman's body during labor to help facilitate birth.  Some of my research has shown that once relaxin is released is an EDSers body the woman's body never "goes back" the way it was before, thus dislocations happen easier and more often.  Some women chose to undergo induced labor a week or so earlier than their due date to try to prevent this.  I know that it is recommended to not have a Cesarean section for an EDS mom.  I know that there are also extra risks if the child has EDS.

This got me thinking about my birth.  My mom nearly hemorrhaged with a bad bleeding problem.  Oh, let me clarify, I'm the first EDSer in my family.  That makes me even more rare!

I believe I've mentioned before that I have PCOS, which is the leading cause of female infertility.  PCOS is also responsible for an increased risk of miscarriage.  Usually I don't ovulate due to the PCOS.  Well, guess what?  I've ovulated two (maybe three) months in a row!  I'm ecstatic.  I'm going around with a goofy grin on my face and listening to my favorite music.  I want to be a Mommy so bad.  I know my DH will make an awesome, awesome Daddy.  We've been talking a lot about raising children, such as disciplining them, teaching them safety rules, and of course, loving them.  

The book What to Expect Before You're Expecting by Heidi Murkoff and Sharon Mazel has become available on now.  I'm excited to be getting the book.  

I really have a good feeling about our having a baby.  We have stuff to do first (get my health under control, get finances under control, go off my medications) but I feel like I'm at least a bit closer to the day I'll enter into Mommyhood.  


Related Posts Plugin for WordPress, Blogger...