ADA, Chronic illness, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, disabilities, disabled, Disableds, doctor, Doctors, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Health, HealthCare, Joint Pain, JointPain, Joints, Joints Pain, Medicaid, medical, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, sickness, Special Needs, Spinal Deformity, SpinalDeformity, Spoonie, Spoonies, Syndromes, Zebra, Zebras

EDS Journey: trying to find a genetics dr- Epic fail

Life of someone with EDS/ Ehlers Danlos Syndrome: I have had it all my life, but don’t know the type. I was trying to find a geneticist that accepts Medicaid because I am having more and more joint pain(if it’s not my scoliosis, its joints), and the only way to truly find alternatives and answers besides Pain medications would be knowing the type I have. so I called Medicaid, but they say all that’s in their system is Pediatrics.

God, please send me a sign and some type of help. πŸ€·β€β™€οΈπŸ™πŸ™πŸ™πŸ™πŸ™ #RareDisabilities #EDS #EhlersDanlos #Louisiana #Medicaid #MedicalSystem #Disabled #Disability

ADA, Adult, adulthood, Adulting, Infection, Infections, medical, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine

Disability Journey: update- No More infection!!!

I am almost at a year post-op. During the surgery, it was discovered that the broken rods that were being replaced had gotten infected, causing an infection throughout my body and I was put on IV antibiotics for 6 weeks post-op, then switched to oral antibiotics- ever since then, I had been on the oral antibiotics. 
I was due to go to bloodwork in March, but due to COVID, things got pushed back and hard to get in to go do the bloodwork until almost 2 weeks ago.  Finally, almost 2 weeks ago, I had bloodwork done to send off to the Infection dr in St Louis to see if I still had the infection in my body. I hadn’t heard anything, so I decided to give a call. They just called back and said my labs were all clear. No More infection!!! woot-Woot! No more antibiotics! πŸ˜€ yahooooo! Break out the champagne. πŸ˜› haha.

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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,Β 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.

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My fiance’ tortured me today- May 2019

Not really! I had a infected bump on my foot and he had to pop it with a needle and I am such a wuss about needles and pain (as much as I’ve been in hospitals and drs appointments)! Then afterwards, he had to put peroxide on it and it burned like hell. I know he doesn’t intentionally do it to hurt me, but to keep me healthy because he loves me. Still don’t know where that bump came from or how it got infected?! Oh well.

Another Mystery of my life.

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Another Twisted Turn in “my Tale”-April 2019

So for many of my followers on Facebook, you probably are aware of a wound I have been fighting for over 1.5 years and if you don’t follow me on Facebook, then you aren’t aware of much since I just started really keeping up with my blog.

Anyway a little backstory, May 2017, I awoke one night with my back feeling swollen and hurting. I thought a rod had penetrated my skin and was broken (turns out there were broken rods,) I had an abscess (boil) on my back, which, a day or two later popped, and ever since I been fighting with an open sore wound that comes and goes.  For two months, I saw my GP, after a few rounds of antibiotics and it not healing, she referred me to Wound Care.

Wound Care has packed it with mesalt, cauterized it, packed it wound-gel, and even surgery to clean out/take out the “sinus tract.” The wound still comes back. Thankfully, we don’t think the rods have been infected (hopefully they aren’t wrong).

Anyway, It had behaved for over a month or two and I thought for sure it had decided to finally start to heal up. Then tonight, I noticed the area around it felt swollen around it (fluid build up) and was oozing slightly with a tinge of blood too), and that it itched, So I had my fiance’ look at it and sure enough, as usual, the hypergranulate tissue poked through the wound  and reopened it. AGAIN! So will call wound care in the morning and try to get in. *SIGH*

#NeverEndingStory #StoryofMyLife #MyBodyHatesMe