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.
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! 😀 yahooooo! Break out the champagne. 😛 haha.
While I was working on my autobiography about my life (still a work in progress), Mom contributed the following chapter for it; Enjoy.
” South Louisiana knows how to eat, drink & party. Life was pretty easy for me growing up. I did my share of partying in my teen years. Life should be a party, but we’re not always the guest of honor. Sometimes we must take our places in the back of the room. Jamie taught me that life is not fair and we are not perfect. I felt guilty and still do sometimes that my daughter has to suffer so much, to teach me and others about important things in life.
During Jamie’s 1st year of life, words were spoken to me by a doctor that have haunted me to this day. He told me that he could just look at her and see that she wasn’t normal. I am thankful for these words, though, because they opened my eyes. We have all been created to be different, but we are normal. What we are is what God intended us to be, therefore, it’s our normal.
Jamie has such a strong personality with the ability to win hearts, but unfortunately, trying to fit in has made her heart somewhat hard. I always wanted her to be tough. As a female, I knew she would have to be strong; being female with a disability, she needed to be extremely tough. I never wanted her dependent on anyone. She learned well, she hates to ask for help. She hasn’t learned to balance her strong personality and independence with her ability to teach people as well as she has taught me.
A lady that had a hurt back shared with me what Jamie did for her life. During the time Jamie was in swim therapy, this lady was also receiving therapy, but she was having a tough time adjusting to her injury. She was angry, in pain, and feeling sorry for herself. Then comes Jamie, this little ray of sunshine with a smile that would light up a room. It was because of Jamie’s disability she found the courage to not give up. As the saying goes, “She put on her big girl panties and told herself, if this little girl can have such strength to deal with her pain, shame on me for the self-pity.”
She had such an outgoing personality when she was young. Ronald & I brought Jamie to a wedding for a pool playing friend of his. Ronald knew the bride, groom and a few of other people. I knew the bride & groom. Jamie didn’t know anyone. She worked the room like a politician running for office, going from table to table at the reception. By the time we left, almost everyone in the room knew her name. How does society take you from the point of being a social butterfly to the state of almost wrapping yourself in a cocoon? I hope one day, I can see the self-confidence she once possessed shine through again.
Jamie started preschool at 3 years old. She still often tells her preschool teacher, she would like to go back to that time in her life. She was so happy; rarely did she complain about pain. She was in preschool for 2 years. The coordinator wanted her to stay for another year. Ronald and I decided she needed to be pushed through to kindergarten.
She adjusted well with a fantastic teacher. At the end of the school year, her teacher shared with me, how she was apprehensive to have Jamie in her class. Unsure how Jamie would handle the class setting. With tears in her eyes on that last day, she said, “It had been a tough year, the class had challenged her, but because of Jamie’s smile, she had the ability to not give up. Jamie’s disability helped carry her through the year.”
When Jamie was about 5 years old, we took a trip with my niece and her children to Texas to visit my sister. We stopped for fuel. Jamie was told to stay in the car with the others while I went inside to pay. My niece needed the restroom so she came in and Jamie followed her. Jamie asked for a snack cake, but our plan was to eat when we arrived at my sister’s house. I told her, no, but a little lady looked at me & said, “Let that child have a snack” and she bought it for her. I realized at that time, the world was going to spoil my child.
On separate occasions, years after Jamie went to Jr. High, I met up with former principles of the elementary school. Both shared with me, Jamie would give them a hug, every afternoon before leaving school. Sometimes they may have had an extremely hard day, and her hug would lift their spirit.
In Jr. High, the assistant principal would give her such a hard time. He gave Jamie the name “Jasmine” and that is what he called her every day. She would stomp her feet, saying, “My name is Jamie, not Jasmine.” He would laugh. Getting Jamie frustrated seems to be what most of her friends and family like to do.
Most people go through their entire life not knowing their purpose. Jamie’s smile so often would lift a person’s bad day when she was a child. Being an adult, she finds it a little more difficult to be happy and carefree as she was in childhood. Her pain has gotten worse, therefore, it is more difficult to smile. Sometimes she needs someone to give her that smile and hug her that she so easily gave as a child. The great job we did making her independent also makes it more difficult to ask for help from anyone; even when she needs it!
Why do we try so hard to fit in? We are all created equal. We have different hopes, dreams, and talents. It is when we try to fit in, we are put into a box. Thinking outside of the box is what makes us truly become what we are meant to be. Ourselves.
People often tell me what a wonderful job Ronald & I have done raising Jamie. I feel we have been blessed to have shared in her great little life. Her life hasn’t been easy, no life is. Dealing with a disability for a child is more challenging, but the rewards I’ve received, far more outweigh the challenges. Sometimes, I still feel guilty, because the struggles with her disabilities have taught me so much about life. Although I do realize, we didn’t raise her alone.”
technically it started last night. It was a bad pain night and I couldn’t sleep. I stayed up till 2 in the morning before sleep finally overpowered me.
I slept on and off. Woke up to feed the cats, stayed up a bit, went back to bed and slept again. had joint and head pain most of the day.
Then the icing on the “crap cake” of the day-
poor david just witnessed a “Jamie Disability Meltdown” Adventure
it started with him asking me to put mayo and mustard on his bread for his hotdogs while he was microwaving the hotdogs…so I did it my way, on the plate and just spreading it with butterknife.
David: why you don’t hold a bread in one hand and use the knife to spread with the other hand?
Jamie:(a bit sarcastic/snarky) because if I hold it in one hand, it doesn’t hold flat, ill squeeze/bend my hand and then you will have squished bread..
David: you can’t hold your hand flat?
Jamie: (again, snarky/sarcastic) No, I cant. its called Ehlers Danlos..remember..that thing I have that makes my joints loose and weak.
David: come here. I’ll show you.
Jamie: (getting annoyed and flustered because I been living with this 29 years, does this dude seriously not think I’ve tried multiple ways to do things?) No. *voice starting to shake and fists start to clench*
David: come on Jamie, just try my way.
Jamie: (finally breaks down and flood gates open) David, I’ve had this shit 29 years, I’ve tried every way I can think of. This was the easiest way.
David: okay. okay. I wasn’t teasing you. *trying to hug me*
Jamie: I know. But still, if you had something for all your life and parents who taught you to be as independent to the best of your abilities, you think I’d just give up? no. this was the easiest and most accessible way for me.
David: I didn’t know. I only been with you 3 years. calm down. its okay. i still love you, you’re still beautiful. calm down. you gonna give yourself a headache.
Jamie: *sniffles and trying to calm down* I already had one to begin with.
hey if he wants to be future husband of someone with a disability, he might as well see all the ugly sides too. 🤷♀️🤷♀️🤷♀️🤷♀️🤷♀️🤷♀️ he wasn’t there for the 2012 episodes-poor mom had those episodes and she didn’t trigger them…she was just in the “crossfire” lol
and then later on another incident involving David happened: we tried to make waffles breakfast for dinner but no cooking spray, so tried to use regular cooking oil, but they stuck and didn’t cooperate so I was put back in that “i can’t do nothing right.” Mood.
I hate days like this where my disability and the side-effects of it, feel like the world is closing in around me and I cant breathe. *sigh* just another day. Things will get better. Tomorrow is another day.
A week ago, July 23-24, David and I went to Bay St Louis Mississippi to go hang out with my “hitler of the respiratory department,” friend Marcela Spraul from St Louis, Missouri.
Marcela and I got close while I was at Shriners Hospital back in 2012. She has become like an older sister/ second mama to me. She called and told me they’d be in Bay St Louis and I immediately googled the directions. It was only 2 hours and 50 minutes from my house, Easy! Way better than the usual 10-12 hours it takes to see her; of course, I am gonna make the trek to go out and see her.
We had a lot of fun and I enjoyed catching up. and I will be seeing her again in September for my checkup appointment in St Louis. They offered to host us so we don’t have to spend money on hotel- Awww! ❤
I love Marcela, even if the beginning of our relationship was a bit rocky! LMAO.
In the car with David, the song “Janie got a gun” comes on.
David while looking at me: yeah, Jamie’s got a gun
Me: I think it’s Janie not Jamie. ( I proceed to Google it and no surprise I was right.) Yep, it’s j.a.n.i.e. not j.a.m.i.e. Janie.
(Continues while laughing) and if I had a gun, what’d I do with it?. I’m too weak to pull a trigger. Throw it like a boomerang?
One of my favorite Disney Movies is Hunchback of Notre Dame. I relate so much to the main character, Quasi Modo. When it first advertised, I was about 5. “Mom look! He got a back like mine…”
Fast forward years to 5th or 6th grade when they’d call me “hunchback” And I’d cry upset..oh how time changes perspectives. Lol
Still one of my fav movies though.
watching it as an adult, I had my own inner dialogue:
1.) Frollo seems like a majority of society about special needs individuals,
2.) there are some ableism beliefs “that special needs can’t have love,” “deformed,” “ugly,” etc.
3.) quasi heart is so sweet and pure and brave. ,
4.)Frollo is Satan,
5.)Esmeralda is so loving,
6.) Love and loyalty win overall.
7.) Quasi should get the girl just “because he was looking different,” he was friend-zoned smh.
8.) If nothing else, I want to have a heart like Quasi.
9.) And Frollo falls to a fiery death…have fun in hell, you blasphemest demon a-hole. #byeFrolicia lol 10.) Aww, the little girl moment, in the end, was so sweet. She was curious, not scared, and accepting of him! Proving that hatred and fear is learned. #innocence ❤️❤️❤️❤️
Food for thought… I had a diagnosis “Scoliosis “ and “Ehlers Danlos syndrome” since infancy. One pediatrician even told mom “you can just look at her and see she isn’t normal.” In reference to me.. a baby. An innocent little baby. Now my parents had 2 choices in raising me:
-Either prove society wrong and that my life had worth, treat me like they would like my older brother (who is “normal”) and raise me to be independent and self sufficient to the best of my abilities…
– and I’ve seen this with some families(not all)..give them a “pass”, no expectations of them, no discipline or correcting them. “Oh they have this diagnosis, they don’t understand “…blah blah blah excuse after excuse. “..no boo, they can understand “right and wrong,” but you just don’t wanna go through the “headache “ and time of teaching them. Or worse, you pity them and feel sorry for them;which will “cripple “ and “handicaps” them more. The world is rough and tough, it will not pity them, they need to be prepared.
My parents were tough but fair. I may not got namebrand clothes or expensive shoes, I didn’t get toys or candy every Time I went into store (unless I had my own allowance or money I saved or special occasion/holidays), I didn’t get cell phone till high school (16),I had some chores to do(whatever I could), I was held accountable for my grades and misbehavior. On the flipside, I never did without food, shelter, clothes, I had toys, I was taken on vacations,but there was lots of love and plenty of memories made. That’s wayyy important.
Life isn’t easy for anyone. But it’s up to that person to decide “do I wanna live like this? (Poverty, struggles, victim mentality “poor me,”) or do I pick myself up by my bootstraps and make better for myself.” Its all about perspectives, confidence, determination,and willpower.
Am I saying there aren’t obstacles in life that cause delays and blocks on your life road? No. Absolutely not. Never would I say that. And I’m not saying not to vent or fight for change. But it’s better to lead by example to be the change you wanna see. Be the spark for change; Be a Leader.
Turn to God’s light and goodness and he will bless you. God bless everyone.
In Jr. High was the time I back-sassed my dad in Lowe’s. First, let me explain that I was grouchy because I didn’t want to be there, to begin with, but yet I was forced to go with him. We were at checkout and we had roach spray, along with many mouse/rat traps. The clerk said some statement about: “you must have a mouse problem?” I replied: “Oh, yes! A lot!” My dad replied: “Jamie, we don’t have a problem; just an occasional mouse or two from the field next door.” But of course, Jamie with the big blabbermouth didn’t shut up until dad growing frustrated told me “Jamie, Stop.” Well, I was mad that he cut me off from telling my stories, plus the fact he forced me to come anyway. Once dad had paid for the stuff, he asked me to carry the bag, to which I replied: “Why can’t you do it; I’m not your slave.” Oh, you should have seen the vein in his temple throb, and his face turn red; I knew I had crossed the line: “No daddy, I’m sorry; don’t whip me!” as loud as I could in Lowe’s, not realizing that if anyone heard him, they could report him for “child abuse,” when he was just disciplining his child. Boy, was my dad embarrassed and furious! I think if my child ever did that to me, I would have whipped them when we got in the car! I was so scared that I didn’t get into the front passenger seat, instead, I got into the backseat on the floorboard; trying to avoid my Dad’s wrath! (He still loves to hold this story over my head! LOL)
Due to the severity of my Scoliosis/Kyphosis, in summer after 4th grade, I had my first bout of Pneumonia. For those who may not be aware of everything that Scoliosis effects, here’s a health lesson; it’s not just the spine. Sure, the definition is “Lateral curve of the spine,” but it all depends on the severity. My Scoliosis became what is known as Kyphosis, “Hump Back,” and is multiple curves, whereas Scoliosis is just one curve. The more a spine curves, the more it can cause other internal problems in important organs such as the heart, stomach, lungs, etc. Before my surgery in 2012, my lung capacity was 18-20%, I had ribs twisted around my spine, a lot of stomach problems, and problems that were never diagnosed or discovered until my pre-op visit or after surgery; (How weird is that?) Anyway, I was almost finished with my week of Summer VBS (Vacation Bible School- a weeklong camp that is put on by local churches/religions), when the Wednesday night, I started to develop a cough. Mom took me in to see my pediatrician, and he said, it had started as a typical “summer cold,” and due to my hatred of shots, my doctor just gave us cough medicine. The medicines, however, did not work, instead, my cough progressed until I had a “popping” in my back every time I coughed. I say Pneumonia, but it might’ve been bronchitis that was turning into Pneumonia, I don’t remember exactly what the doctor had told my mom, other than the fact I needed a shot; that memory stuck with me!
We went down to the pharmacy that was in the same plaza as my pediatrician’s office and as soon as we got back to the doctor’s office and I saw that needle, I had a full meltdown in the doctor’s office, to the point where mom had to hold me down. Normally shots are given in the arms, or the butt, right? Mine was in my legs because it was the only spot on my body that had “any meat” on me. You should’ve seen it, mom holding me in her lap, me tossing and turning, her having to trap my legs under hers so I wouldn’t try to kick; I laugh now that I think about it because shots aren’t that bad anymore, sure they are unpleasant, but really a quick pinch and then it’s over.
After the shot, I was crying and telling my doctor “I hated” him and how “he was so mean,” being a total brat, but by that night, I felt like 50% better. Shots may suck, but you feel a lot better afterward because they work quicker than medicine. Life is a lot like a shot, there are changes we don’t like or can’t deal with, we cry and boo-day about it, but it doesn’t change the fact that it is going to happen; it’s a slight “pinch” (shock/anger/sadness, etc), but then we adapt to it and are over it.