so here is the latest development in my EDS journey: I am in several Ehlers Danlos groups on Facebook. And they gave me a few names of geneticists who are listed as pediatrics but also do see adult patients with EDS. So I called the one that was named multiple times to confirm that they still do this and they do and also take Medicaid. So I will give their name to my GP on wed. when I go for a medical checkup so they can refer me. #Amen#GodBless❤ might finally be getting answers .
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.
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?
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!
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.