ADA, Adult, adulthood, Adulting, Chronic illness, Chronicillness, Connective Tissue, ConnectiveTissue, Crazy, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Louisiana, Love, Medicaid, medical, medication, medications, pain meds, Parents of Disabilities, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, Summer, Syndromes, Uncategorized, Youtube, Zebra, Zebras

Disability/Scoliosis/EDS Journey: Ended up in ER


So earlier today, I had my appointment with my GP who agreed to refer me to an EDS geneticist that I had found in New Orleans- Great news, right? Right. 

later that evening, I was outside helping my fiance’ do some yard work around the backyard and he asked me to go get him some bottled water; should be a simple task, right? Wrong. It ended in me having to go to the ER. 

I went into the house, got the bottle waters(1 for him, 1 for me), and started back out the backdoor: Now our backyard door has a drop about 1-2 ft and then the first step. I don’t know if I missed the step or if my ankles/legs decided to give out; it all happened so fast- All I know is next thing I know, I am losing my balance and falling forward and landing face-first onto the concrete sidewalk. 

Landing forward, should spare my rods right? Hmm. well, I’ll get to that…

When I fell, I hit my legs and knees and felt like I couldn’t stand right away, I busted my head on the concrete and had a big gash and later a knot, scraped up my right wrist, and had landed on my left ring finger that had started to already swell. 

I waited for a little while to see if the headache would subside and I’d feel better. No luck. So we went to the ER. They did a CT Scan (to look at my head to make sure no damage) and a Xray(to look at my rods and back). 

The Drs said the finger wasn’t broken; it was a busted blood vessel and ice and rest should bring down the swelling. The CT revealed no signs of any damage or concussions. However, the Xrays were not as lucky: My rods that I just had fixed almost a year ago, from being broken previously, were broke once again! Now the rods could’ve been broken before this incident- After all, I was still taking pain medication on and off as needed and I had an experience months ago while still in the apartment where i had stood up and it felt like a popping shockwave down my back. The timing just really sucks, so now I have to call Dr. Kelly and tell him the bad news about my rods. I feel like I let everyone down again, but I did everything I was supposed to- I wasn’t straining, I wasn’t bending, I was being cautious,, I didn’t get on inflatables this time and I still end up with broken rods. I wonder if my EDS could be a contributing factor to the rods continually breaking? I suggested it to one of my fellow Scoliosis friends who is in a scoliosis group and said there was a girl who kept breaking her rods and getting infections and was later diagnosed as EDS and ended up having her rods removed, so it could be a contributing factor. Hmmm….I don’t know. Seems like I try to do everything right and then something still f** it up and I am back to being a disappointment. UGh. I hate these voices in my head and feeling like I am mentally unstable. Will things ever get easier?¬†


One Mountain conquered, but life dealt me another summit to excavate.. *Latest Update*

People often say “The world is a rainbow of different communities spreading love and good, frolocking with others. There are the ones who are the pessimistis who see their world as a never ending burden of turmoil and misery, and then the type that are the “fakers”- The ones who walk around all jolly and happy and wearing a complete “mask” in public. That is me.

I guess you are probably wondering “what is this going on about? The title says ‘One Mountain conquered, but life dealt me another summit to excavate.” What I mean by this is, I had my surgery to fix the broken rods and it was a major success, however during that surgery another issue was discovered; an infection in my rods.

Below are my newest X-rays.

To combat this infection issue, a pic-line was placed in my left arm while I was at Barnes Jewish Hospital in St Louis, Missouri, and put on antibiotics via IV infusions for 6 weeks and then will be switched to an antibiotic pill indefinitely until the doctor sees fit to get me off said antibiotics.

A week after my surgery, on Aug. 21, I was discharged from the hospital to go back to my home in Louisiana so that Medicaid would cover my IV antibiotics; if not, We would’ve had to pay out of pocket for the treatments and it was $120 a treatment (6 weeks of treatments, 2 x a day- so $120 a treatment x2 times a day x7 days x 6 weeks = $10080, and then if we stayed in s Louis but not at the hospital (haven house)= $50 a night x 6 weeks at least = $2100..yeah, I think we made the better decision by coming home…LOL)

Now 2 weeks and 4 days post-op, I awoke to my IV tape rolled up, the pic line area exposed (I am thinking that I was scratching in my sleep). When my fiance went to clean it up and re-tape it, he noticed that the pic line was out more than the doctors like, so we rushed to our local E.R., Lady of Lourdes Hospital. Once there, they were swift about getting me to the back; a nurse, however,¬†decided to remove my pic line from my left arm (which was covered in red splotches due to allergic reaction to the tape) instead of leaving it for the specialist to push it back in. Hours later, the specialist showed up and had to re- stick me for a new pic line in my right arm now, when she said that had the nurse previously not removed it, they could’ve just pushed my other one back in. Now I am back home and my right arm is sore and throbbing because the lidocaine sedative is wearing off and my muscles are aching.

Oh well, I did what I needed to do and I will “grin and bear” this burden I have to deal with for 6 weeks until I can switch to my pill version of antibiotics. I cannot wait for this darn pic line to be out of my arm, but all good things come to those who wait. I will pray for God to grant me patience to deal with it.