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.
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.
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.
Thoughts of the day…I love all my friends no matter their race, nationality, religion, political beliefs, etc. if you are my friend.(Except if you are racists, ableists- have negative thoughts about disabled people, etc.) We may not always see eye to eye on everything, heck we might even debate some things, but if we are true friends and mature adults, we can still remain true friends through all that- And as long as we respect each others views and don’t try to force our views down each others throats. .) I will always care about my friends even the ones I am not close with anymore. They are still in my memories and my heart, and If anything happens to ANY of my friends, you can bet, I will be there for them and their family. If someone hurts them or worse, I will seek vengeance for them. Hell hath no fury like a “Momma hen” type friend. I hit, kick, claw, and will beat people with a bat to defend my friends and family and singing “Someone gonna get their ass kicked today” LMAO. #UnitedWeStand #DividedWeFall
Some of my best friends are different race or nationality than me and they are some of the best friends I could ever ask for. They love and support me and my dreams no matter what. If anyone was to be racists to them, I’d be so angry and defend them, especially if I was right there and witnessed it- I’d probably get in the offender’s face and tell them off or worse- hit,kick, claw, punch, slap, maybe even beat to a pulp with a baseball bat- But I’d do that for all my friends and family, I am very protective of my loved ones and hate to see them hurt; whether it be physically, mentally, or emotionally.
Its 2020, and the world is still in chaos with discrimination and racism, hatred and anger, so much division. We need to come together and make the world a better place for future generations, because right now as much as I want to be a mother, I do not want to bring a child into all this violence, crime, and hatred in the world; Children cant even have childhoods anymore and are forced to grow up too fast in this world. 😦 We must do better for our children and our children’s children and generations to come!
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.
My brother and I’s relationship has gone back as far as to when I was in the womb. Mom often wrote that my brother would tell her, “It’s a girl because all she wants is junk.” Mom ate just healthy foods when she was pregnant with my brother, whereas, for me, it was just junk food. Another interesting fact is that my brother is the one who picked, “Jamie,” for my name; Mom and Dad wanted a “J” name, who knows how he picked it: maybe it was because Dad’s middle name was James, or maybe he just liked the name.
Once I was born, he often spent time with me. There are pictures of him holding me, or sitting with me in the rocker under some covers. When I was 2 years old, he’d follow me around with the video camera and video me; it’s one of my favorite videos even though the camera shook and watching it, can make you sick from all the motion because it shows he loved and interacted with me. I gave him the nickname “boy” when I began talking; my uncle/ Paran would call him that, and I picked up the habit. When I was 2, I’d beg him to read with me and he would sometimes. Our relationship started to get strained when I was in pre-k because he started to become a pre-teen/teenager.
When I was 5, I would sit at the front door like an eager puppy, waiting for him to get off the bus. I’d jump around excited, “bubba’s home! Bubba’s home!” Would he pay me any mind once he got home? Nope. He’d walk past me, annoyed from school, go to his room and slam the door. He was in Jr. High at the time and Mom says, she wouldn’t interact with him much except to make sure he was still alive, and to let him know the food was ready.
When you are a younger sibling, you often tend to look up and emulate/try to imitate your older siblings, out of the feelings of “that is how I need to act, just like____ ((whatever the name may be). For me, when I tried to do things my older brother, Jared, did, it often got me into trouble; examples of this include the time I nearly drowned at Blue Bayou Water Park in the wave pool and another time when I was crossing the highway we live on, to head home from the neighborhood across the street from where we lived.
I was about 5 years old, and every summer one of the highlights was to go to Blue Bayou Water Park with my Aunt (one of Mom’s sisters-in-law) and her children. At the time I had not taken swimming lessons yet, so I stayed in the shallow ends of the wave pool, or went in the kiddie pool. We were in the wave pools and the waves had not started yet; my Brother had come to meet us and right before the waves started up again, he was heading out to the deeper parts; At the time, I admired and looked up to my older brother, and tried to follow him. I was crawling on my hands and knees into the deeper and deeper (but still in the shallow part) of the wave pool; the waves started and knocked me over, and I started to panic, so I didn’t even think to stand up and run back to mom. I just stayed under the water, coughing and spitting up water, waving my arms. Mom ran over and “rescued” me. I think it was this incident that convinced mom to get me into swimming lessons. The pool and water soon became a big part of therapy for me and I love to swim now; I am convinced I am part mermaid. I want to be able to breathe underwater, swim with dolphins; I want to be just like “Ariel,” the little mermaid.
The other incident was when I nearly got hit on the highway we live on. My Brother, his friend, my mom, and I were across the highway in the neighborhood, riding bikes (I had training wheels on mine). The sun was starting to set, and the mosquitos were coming out and biting me. My brother and his friend were old enough to cross the highway by themselves, so they told mom and began to leave. Mom was talking and visiting with one of the neighbors, kind of distracted; I kept tugging on her arm, ready to go, but she wasn’t listening. That is when I saw my brother and his friend leaving, so I followed them; His friend noticed and started to lag to watch me. My brother looked both ways and crossed the highway, with me behind him. I, however, was too young to know the whole “look both ways before crossing,” rule, and started right behind my brother, just as a huge 18 wheeler started towards me, really fast. Luckily, my brother’s friend was behind me. He grabbed me out of the road just in time. Dad was in the front yard, and he looked like he was about to have a stroke! I think my brother got in trouble instead of me, but I can’t remember for sure.
I think it was after those two incidents, I learned not to try to imitate my older brother. He was older and knew how to handle life more than a little kindergartener did.
My brother and I did fight and have that sibling rivalry thing, up until I returned from surgery. We had rare moments where we didn’t fight or argue, but we were two different individuals. When I was younger, Jared had chores, while I didn’t; when dad would fuss at Jared to go do chores, occasionally I’d fuss dad and say “quit working Jared like you a slave-driver, dad,” but he’d often tell me “stay out of it, Jamie.” And I quickly shut up.
When we did argue/fight, it was often because I was a hyper little brat; I will admit that. I think it was mostly, I wanted him to play with me, and he wouldn’t. I called him names: “Jar-head, armadillo (I have no idea why,) Boy (that was more when I was a baby/preschooler).” Sometimes, I’d have a “food fight” at him with my tea-party play food. He was a boring teenager who didn’t want to play with his kid sister, and I wanted attention from my big brother; I just sought it annoyingly. He would pull jokes and pranks on me, and I took it the wrong way and would cry. When I was 2 years old, he put a frog in the “golden Easter egg” during an Easter egg hunt, and to this day, I blame that for my phobia of frogs. Sometimes, I would pick/instigate it, and when he’d try to “strike back,” I’d go hide; like the one time in 2nd grade when we had ice/snow, I went outside, got some icicles, and stuck it down the back of his shirt when he wasn’t looking. Afterward, he went outside to get some, I ran to the bathroom and locked the door.
When he had friends over, I’d try to hang out with them, tag along, and sometimes he’d lock me out of his room, or they’d torment me, by locking me in the hallway till I was a crying mess, banging on the doors; sometimes, one friend and him would pretend that they were going to put me in the oven; they wouldn’t actually turn the oven on, just open it and act like they were going to put me in; I’d cling to that friend’s neck and beg “No!”
One time when I was 6 years old, he had to babysit me. I was playing with his Nintendo NES, but he got mad that I had taken it out of his room without permission, so he unplugged it, and put it back into his room. I was easily scared of everything and every villain of every movie, but yet, I watched Anastasia the movie that night and slept on the floor in a sleeping bag in his room. I heard a noise, a voice,“Jamie, go unlock the back door.” It was my parents; it turns out they had locked themselves out. I tried to shake Jared awake, but to no success; I was so scared that it was a bad guy, trying to trick me, but I did go unlock the door and luckily it was my parents; I later found out, my brother was faking sleep just to see what I would do; what a jerk!
As I got into my teen years, he would be annoyed because unlike him, I had no “thirst” for knowledge. He felt I was “ignorant” and that was one of his pet peeves. He’d occasionally try to help me with math or science, but he’d end up confusing me more, and I’d get aggravated and snap at him. Other than that, we didn’t talk or hang out, mostly cause he was in college and I was still young and “ignorant”. The only time I remember him smiling during this time was the one time he got drunk and “creepy”; we had gone to a wedding for a cousin, and then after we went to see a movie: Mom, Dad, my brother, his girlfriend, and me. I don’t know how this happened, but somehow I got this seat between him and his girlfriend; my brother started to hug me, smiling, and ruffle my hair: I wasn’t used to that treatment by my brother, so I looked at his girlfriend and said: “switch seats with me, I think your boyfriend is plotting to kill me.” Another memory around this time was when I was getting curious about my Ehlers Danlose and my brother who always had an interest in science, came to me and held a scalpel and said: “all I need is a skin sample and I can get you your answers.” I looked at him and yelled “I’m not a science project, heck no! I’m not letting you cut me with that thing, get it away from me, weirdo!”
It wasn’t until I guess that I got into college myself, that we started to have a different relationship. When I’d see him, he’d ask me about my classes and how they were going, he’d offer to help me out when I’d hurt with aches, etc. He was there when I met Dr. Lenke for the first time, and he asked questions to Dr. Lenke. When my family did a benefit for my medical funds, he and his girlfriend helped out a lot. I guess what I am saying is, once I got into college myself, and wasn’t as “bratty” and “ignorant” he started to like/tolerate me, but it wasn’t until I got home from my St Louis journey, that our relationship got to what it is now; When I first got home, I had gotten a new computer and he was helping set it up. He had me sit next to him to watch, but he would ruffle my hair, and just smile at me; it’s like “uh…weren’t you suppose to ruffle my hair like that when I was 5?” Now when we see each other, we give hugs, no kisses because that’d just be too odd. He asks about how things are going in my life. I ask about his occasionally. We have a good relationship now, it was odd at first because I was so used to the tension, but I love it now. I know when I need it, my big brother will always have my back; Love you, Bro.
I try to usually be a pretty positive person, but like we are struggling financially. The mattress in our bedroom is killing both me and my fiance’ backs so need a new mattress (plus I am still paying this mattress off, 4 years later.).
I dropped my laptop a few weeks back and ever since, have been having to use HDMI cable and tv as a monitor because the screen doesn’t wanna turn on and the last few days, the laptop is starting to show signs of dying worse off. (My fiance says he will build me a desktop pc, so hopefully, my laptop can hold off till then or I can afford to get a keyboard accessory for my Ipad Mini tablet. (I will need one eventually when I go back to college classes.) Since then, my laptop has stopped working with HDMI and my fiance’s cousin is looking into fixing my laptop and since its family, I probably will get a discount but will still cost sadly.
Then finally, I feel like I am straining my eyes more and more each day, even with my glasses. I cannot afford to go to LensCrafters (they don’t take Medicaid) at the moment. Sometimes I think I should just bite the bullet and just get the fricken laser surgery, but I am also scared to do it.
I hate ranting and venting, It just gets overwhelming at times…
Also, Shane Dawson, a YouTuber I have been following since the beginning of his career 2008, and Jeffree Star (who I just started following last year on youtube) collabed and made a makeup collection together and I cannot afford it and I am legit sad and disappointed about it. I just miss being able to afford all the things I wanted. But no, I gotta “adult” and pay for college out of pocket, pay for bills, and rent (thankfully after March that will be done..the rent anyway.) Things will get better, this is just a bump in the road. With God at the helm, I am positive we can make it through any rough weather. ❤ ❤ ❤ God’s will be done.