Completely and Utterly Deflated

I can't believe this happened to me today and trust me when I say I have NEVER been treated like this in my life. I attempted to make an appointment with my mother's Rhuematolgist the other day in order to be tested for Ehlers Danlose Syndrome, however it is that particular OFFICE's policy to require a referal regardless of your insurance carrier. Fine. So I made an appointment over at my General Practitioner's in order to get the referal. I had seen this particular Dr a few times in the past for refill's so I wasn't a complete stranger to him. He asked what I needed a referal for, and I said Ehlers Danlos. Without even examining me, or looking at my past medical or my family's past medical history he proclaimed I didn't have it. He said because my skin wasn't stretchy and that I've never had a complete dislocation of my joints that I didn't need to be tested. Well ass face if you knew anything about EDS you'd know that there are 6 different types and not all of them have the same markers.

I started to cry.

He says that in relation to my choking episodes and joint pain, and judging from my crying it must be anxiety causing all my problems. No asshole, I'm crying because you just shit on me.

I had hit my breaking point today because I choked AGAIN at work, and kept screwing up at simple tasks because I can't function with out food in my belly. And there's no food in my belly because everytime I eat I either choke, it gets stuck or is proceeded by a volcanic eruption of stomach acid. I had hopes that Dr Asshole would be able to give me the referall I needed but instead was in so many words told that I'm crazy, don't know what I'm talking about, and stop looking at things on the internet. Then he proceeded to give me Lexapro, a fucking psyche med. Then told me he was gonna test me for Lyme's disease. Oh yeah he also asked me if I had OCD, basically said that my Ear Nose & Throat dr didn't know what he was talking about (I had a endoscopy done) and inferred that my husband is lazy (as in if I had more help maybe my joints wouldnt hurt so much).

I'm not some fruit who cruises the internet looking for a disorder to have, or a drug seeker. I don't want meds, I don't want a disease, I just want to be able to fucking eat and function like a normal human being. I'm tired of almost choking to death everytime I eat, I'm tired of not being able to pick up my kids, falling down when I walk, getting stuck getting up out of a chair or out of a car. I'm tired of my joints popping in and out of place multiple times a day.

If I do indeed have Ehlers Danlos it can make a difference in how this whole choking episode is handeled. Medication isn't going to work if I have EDS. And so far the 3 I've tried haven't worked. I have almost all the markers for Classical and Hypermobility EDS, and my mother has 2 disorders related to EDS, and EDS is a inherited disorder with the exception of 1 form.

I've been teaching MJ how to dial 911 in the event mommy needs help due to my choking, and now I'm at the point were I just won't eat when I'm home alone with the kids. I really can't take this any more it's ruining me. I have a barium swallow test scheduled for monday if I don't break down and go to the ER before hand. WTF Seriously.

Barium Swallow Test, EDS, and Other Adventures In GERD

Oh the joys of acid reflux. Previously associated with the feeling of acid shooting up my throat like a volcanic eruption, GERD apparently is the cause of my choking episodes. My ear, nose & throat specialist performed an endoscopy and found my throat burnt and swollen in addition to being structurally small. I've pretty much had a life long problem of these choking fits, and sometimes just having food sit in my throat, with very little to no pain from acid reflux. So I've been going through different medication trials since the endoscopy and have a barium swallow test scheduled. Now in addition to my new found membership of the GERD club I've also had a life long issue with loose joints, subluxations or incomplete dislocations of various joints. Now what does loose joints have to do with GERD.... I came across something called Ehlers Danlos Syndrome (EDS) which is a genetic disorder of the collagen.







"Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.
"

All of my oddities might have a name, which well it really proves to resolve nothing as there is no cure, it is nice to know that there is a reason behind them, everything from my mitral proplapse,GERD, abnormal scar healing, easy bruising, ortho pedic and cardiac problems and poor circulation. I have to get a referral to a rhuematologist in order to get the proper testing for Ehlers Danlos, and if indeed that is the cause to my multiple oddities there may be surgery needed to correct the incompent esophageal sphincter, and special precautions needed for any other surgical procedures.

The moral of the story kids is to be your own advocate. I look forward to not living in fear of eating :)

Maybe Just A "Little" Colic

I'm not sure if it's possible for a baby to be a little colicky, but I'm trying to figure out why it is princess cries everynight around dinner time for atleast an hour. And by "cry" I mean scream unconsolibly complete with bright red face, real tears and clenched fists. We've tried everything to help her from rocking, burping, rubbing her belly, giving her a tub, but nothing helps, she won't even take her binky. The Mayo Clinic defines colic as:

"If your baby cries about the same time each day and nothing you do seems to offer comfort, your baby may have colic. Colic is often defined as crying more than three hours a day, three days a week for more than three weeks in an otherwise well-fed, healthy baby.
Fussing and crying are normal for infants, and a fussy baby doesn't necessarily have colic. In an otherwise healthy, well-fed baby, signs of colic include:

* Predictable crying episodes. A baby who has colic often cries about the same time every day, usually in the late afternoon or evening. Colic episodes may last from a few minutes to three hours or more on any given day. The crying usually begins suddenly and for no clear reason. Your baby may have a bowel movement or pass gas near the end of the colic episode.
* Intense or inconsolable crying. Colic crying is intense and often high pitched. Your baby's face may flush, and he or she is extremely difficult — if not impossible — to comfort.
* Posture changes. Curled up legs, clenched fists and tensed abdominal muscles are common during colic episodes.

Colic affects as many as 25 percent of babies. Colic usually starts a few weeks after birth and often improves by age 3 months. Although a few babies struggle with colic for months longer, colic ends by age 9 months in 90 percent of cases. "

We switched her formula to Similac Sensitive Formula which is lactose free to improve gassiness & fussiness, we use Dr. Brown's bottles which are made to reduce gas as well as use the Mylicon infant gas drops. She just started fussing at night within the past 2 weeks, she hasn't always done this. She started fussing while she was eating after about 4 weeks so thats when we switched formula which has helped a lot. She also doesn't scream for 3 hours at a time, and sleeps really well at night. So I'm really not sure. Princess is a lot needier than MJ was, so maybe that's just the nature of the beast?