anunstickysituation

Holy macaroni! September 25th? That was my last blog post?

A lot of updates! Let’s see…..

Changed jobs – yes…this is EDS related. I was self-employed and I’ve gone back to being a company grunt. The health insurance is more affordable and has better coverage than what I could afford being my own boss. Since the EDS issues are really starting to amp up, I needed the better coverage. The great thing is that I can now go get the diagnosis “down on paper”. Up to now I’ve been lucky enough to have doctors who could tell me that, yes, I have EDS yet were kind enough to not put it on paper so that it doesn’t pop up as a pre-existing condition. There are several really good EDS educated doctors on my provider list too! YAY!

The next big thing is that we bought a house! Now if we can all just quit refering to the mortgage payments as “the rent” and get into that “Homeowner” state of mind, the transition will be complete…LOL! The place is FANTASTIC! Big. Open floorplan. Beautiful, big, freestanding stone fireplace. Single story (so no stairs to contend with). Out in the country. And…..oh my gosh…..A POOL!!! It’s like a bendy’s dream!

On the physical inventory – it is now my right shoulder that is giving me problems with chronic pain. So far I have managed to get by with daily doses of Aleve and Tylenol with an occasional snack of BC Powder. My TMJ is getting worse by leaps and bounds…a lot of slipping, popping and the occasional lock up when my jaw gets too far out of joint. This has led to pretty much chronic face pain and headaches…but manageable with the Aleve and Tylenol I’m taking for my shoulder anyway. I’ve also found that my ankles are pronating rather significantly….which explains most, if not all, of my foot / ankle / knee / hip / lower back pain. Then I found that, in my sleep, I’m bracing my hands against the wall or headboard and hyperextending my wrists…causing them to hurt the following day. So….it’s been wrist braces at night (in addition to the ones I wear during the day) for me. I found some really wonderful ones by Mueller…at Wal-Mart of all places….that are well padded, fit great, and are really comfortable. They do the trick and I have NO complaints.

I keep finding more and more ‘bendy’ things that I can do. I’ve known all along that I could do them but just never realized that they weren’t ‘normal’. I never gave much thought to them and always just assumed that everyone could do them.  Like turning my feet in and putting them together so that they are parallel yet facing opposite directions…..toes of one foot next to the heel of the other. Amazing what we take for granted! I also discovered I can do the ‘reverse namaskar’. Odd that I named one of our 2008 colts Namaskar and that this word should find it’s way into another important aspect of my life. Cosmic foreshadowing at its best I think!

Until next time! I may try my hand at some videos in the future as some days, my hands and wrists just aren’t up to typing. Besides….videos are fun! Lets you put a face and personality with the name!

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So, I have been procrastinating on starting on this blog…and I think I finally figured out why. After years of being told that the pain and all my symptoms were all in my head and that I was just being a big ole crybaby, I’ve been quite effectively conditioned to feel like I’m just whining and that no one is going to believe a word I say. How sad and pathetic is that?

BUT…having that insight is half the battle to reaching the solution. The other half is now saying that this is my blog and I’ll say anything I please and if anyone reading it thinks I’m whining….don’t let the doorknob hit you where the good Lord split you.

The constant bruises on my legs, my hypermobile joints, the constant pain, the chronic fatigue, the daily headaches….and the 1001 other issues and symptoms I contend with on a daily basis are NOT “all in my head”. So, I’m going to tell you about how MY day goes.

I wake up every morning feeling like someone has taken glass and ground it to the consistency of fine sand and injected it in my joints. I also wake up with a renegade Reggae band playing to a packed house somewhere in the vicinity of the base of my skull. Those first couple of yawns of the day send a symphony of pain down my back and around my entire torso. On good days, after at least 15 minutes of taking my physical inventory and determining whether my body is going to cooperate with me, I walk to the bathroom. On the bad days….I crawl. Fortunately, my bad days are still fairly infrequent….but they’re gamely coming from behind and gaining ground.

As I sit here writing, my left shoulder has been screaming bloody murder especially loudly today. The pain reaches from my mid-back between my shoulder blades, into my left shoulder blade, up into my shoulder joint, down my upper arm, around into my collarbone and up into the left side of my neck. This has led to my finding myself stuck in pull over shirts on more than one occasion recently….much to my frustration and chagrin. All of the OTC remedies…I might as well be chowing down on Skittles for all the good they’re doing. At least Skittles taste better and come in a variety of cheery colors. Because I am a hardheaded, fiercely independent, stubborn ass…I thus far refuse to consider taking narcotics. The word “masochistic” comes to mind…but I digress….

The difficulty sleeping due to my increasing shoulder problems is not doing anything good for my chronic fatigue either. When I do manage to sleep, I wake up multiple times a night and end up feeling like a zombie in the morning. All of this leads to what is termed in the EDS world as “brain fog”….difficulty thinking…which leads me to remedy THAT with large doses of caffine in any handy form.

As of late, I have notice an increasing lack of balance – stumbling into door jambs, tables, furniture, and a loss of balance when turning around. I also find that I look at my feet when I walk – something I have done much of my life and which is likely because my brain is not exactly sure where they are and this is only made worse by the lack of balance. I also tend to drag or “shuffle” my feet. Again, something I have done my whole life unless making the concerted effort not to.

My feet hurt constantly and chronically. I am incredibly flatfooted and the whole middle of both feet, from just behind the ball of my foot to just in front of my heel, aches non-stop. Within a short time of being on my feet, the ache morphs into a sharp pain that spreads to the top of my foot and into and around my ankles. This is followed shortly thereafter by pain in both of my knees and if I am stupid enough to ignore that….it just keeps climbing its way up into my hips and lower back.

My hands and wrists have started hurting more and more lately and I find that my finger and wrist joints are “collapsing” more and more easily. My fine motor control also seems to have deteriorated in that I seem to be having a more difficult time picking up smaller objects with my fingers.

My neck, back and shoulders are constantly knotted. I have some theories on that but no definitive answers as of yet.

These are just SOME of the things I deal with on a daily basis. So, while the “party tricks” look neat, the reality is that when the party is over and everyone else is sleeping off their good time…..EDS sucks. It is an insidious little beast that steals your life away a piece at a time unless you are unfortunate enough to be blindsided by an undetected aneurysm that dissects on you.

/bitch session

Now, it is time for me to chase down the Sandman and beat some sleep out of him. I’ll try to be more useful in my next post and put some links to some resources up.

So there I was…at a loose end…looking for a new project (because, as we all know, “a million and one” things on one’s plate just isn’t quite enough…right?) when I decided, what the hell, I’d start a blog about my life with Ehlers Danlos Syndrome (EDS). Too few people know anything about EDS (most horrifically, too few doctors…) so I’m of the opinion that the more of us who speak up and tell our stories, the better. Maybe more people will learn.

To give you an idea – Even though I have had EDS since birth, I was only diagnosed at age 39 and recently had it verified yet again at age 41. Worse yet – I, like many other EDS’ers, ended up having to diagnose myself. *I* had to figure out what was wrong, put all the puzzle pieces together, and then take it to my doctor to be verified.

So, just for something interesting to do, I’m going to take you through the process. I’m going to outline for you what first made me suspect I had EDS. Let’s break it down by symptoms. Below is the general symptom list for EDS:

Major Diagnostic Criteria for the Vascular Type of EDS
  • Arterial rupture – No / Not yet
  • Intestinal rupture – No / Not yet, but do have some ongoing gastro issues and spent much of my infancy colicky and vomiting.
  • Uterine rupture during pregnancy – No…and that period of my life is past….so *WHEW*!
  • Family history of the vascular type of EDS – Possibly undiagnosed. My father and aunt (his sister) both have recently come up with vascular issues (aneurysms). Per my father, according to my grandmother (his mother) there is a history of death from aortic dissection on that side of the family.

Minor Diagnostic Criteria for the Vascular Type of EDS
  • Thin, translucent skin (especially noticeable on the chest/abdomen) – my chest looks like the Rand McNally atlas of the human circulatory system. You can also easily see my veins on my legs (thigh and calf), feet and inner side of my arms.
  • Easy bruising (spontaneous or with minimal trauma) – I *always* have bruises on my legs. You’d think I was half-Dalmation or Appaloosa or something. It is rare that I can attribute them to an injury. They are either spontaneous or from bumps so minor I didn’t even know they happened.
  • Characteristic facial appearance (thin lips and philtrum, small chin, thin nose, large eyes) – This not only describes me but also describes my father, my aunt, my youngest daughter and my son…just to name some right off the top of my head. All suspected to have EDS but are undiagnosed.
  • Acrogeria (an aged appearance to the extremities, particularly the hands) – This applies to my hands. I don’t think my feet necessarily look more aged.
  • Hypermobility of small joints – My fingers, wrists, elbows, shoulders, toes. To a lesser extent my ankles.
  • Tendon/muscle rupture – Not yet.
  • Early-onset varicose veins – Yeppers. Found my first ones at age 22.
  • Arteriovenous carotid-cavernous sinus fistula – Not that I know of.
  • Pneumothorax/pneumohemothorax – No…and hopefully never. Neither sounds particularly entertaining (O,o)
  • Chronic joint subluxations/dislocations – Partial dislocations and slipping of my shoulders, ribs, ankles, wrists and occasionally a finger. Oddly, I never knew that is what it was and that I had, in the natural course of things, learned to put “Humpty Dumpty” back together by myself since they were never complete dislocations.
  • Congenital dislocation of the hips – No
  • Talipes equinovarus (clubfoot) – Yes. Wore braces to correct.
  • Gingival recession – Yes.

On a more detailed list I found more of my symptoms –

  • Dental crowding with a high, narrow palate –I have had to have a total of eight teeth pulled (to include my wisdom teeth) due to overcrowding. I also have the high, narrow palate.
  • Unusually soft skin – Yes.
  • Lazy Eye – Yes.
  • “Cigarette Paper” scarring – Yes. I have quite a lovely example of this on my left thigh.

My current nemesis is increasing shoulder pain. I’ll cover that more later. For now I want to keep this initial post to just an intro to EDS and it’s symptoms.