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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

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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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Disability Journey: through Mom’s eyes

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.”

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Very rough Emotional day

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.Β πŸ€·β€β™€οΈπŸ€·β€β™€οΈπŸ€·β€β™€οΈπŸ€·β€β™€οΈπŸ€·β€β™€οΈπŸ€·β€β™€οΈΒ 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 β€œi 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.

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fun in bay St Louis, Mississippi

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.Β 

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My fiance is so crazy silly…Janie got a gun/Jamie’s got a gun

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?

Lol. πŸ˜‚πŸ˜‚πŸ˜‚

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Beignet: Grooming incident and photo modeling

Yesterday, Wed March 18, 2020, while I was using the “dog shaver” to see about Beignet’s loose dog hair, she was more hyper than usual and wouldn’t keep still. Long story short, she moved while I was going down her back with it, and when she moved, I slipped and got the back of one of her legs- a small cut on her leg and bleeding a little. We went inside, I got bacitracin, gauze, bandaid, and medical tape and bandaged her up. I walked away to put the stuff away and come back to find she had already chewed halfway through the tape, gauze, and bandaid. 

Later that night, I decided to practice my photography skills and used Beignet as my model and uploaded them to her Instagram to try to build up her following and add to her content. I am trying to get her some brand deals; I am almost like those moms who push their kids into casting calls. ugh. Not good, but I can’t help it, she is just so cute and a pretty dog and so photogenic.Β 

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Beignet: Brushed, combed, and playtime!

Today, Beignet was itching and scratching alot so I decided to take her outside and give her a good brush/comb out. I also found one of those dog hair shaver things that she used to be scared of when she was a puppy; good news, she is no longer scared of it, and it got alot of her loose hair off. She’d probably look alot prettier if she had a bath, maybe David and I will bathe her this weekend. I think I will keep up with her daily grooming though, it seems to be helping her alot.

After an hour or two of grooming outside, we came back in and decided to play. She has so many toys that sometimes it is so hard for her to decide what toy she definitely wants and will start with one, then leave it alone after i throw it, to go find a different toy! HAHA.

Anyway, it was a pretty chill day, and I guess with the hysteria and panic surrounding CoronaVirus, I will have alot of time to just be at home and spend time with my wonderful furbaby.

BTW, she totally isn’t spoiled (rolls eyes)

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Beignet now on social media

my dog now has instagram (beignet_cormier)

Twitter(@BeignetCormier)

FB Page: Beignet’s Blingy Life

youtube channel: https://www.youtube.com/channel/UCItP4nxr5T4L7VFs6OKSKqg?view_as=subscriber

Blog page: Beignet’s bling lifeΒ https://beignetsblinglife.blogspot.com/

FB Profile: https://www.facebook.com/beignet.cormier.33

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Beignet: Sweetest best dog in Louisiana- Youtube slideshow video