another sleepless night; chronic pain and tears.

A bad storm passed through Louisiana this week so it has been quite a bit of sleepless nights for me lately and then add in the dreaded once a month bullshit us females have to deal with, adding in stress, anxiety, hormones, emotional roller coaster, all that (sarcastic tone) “fun.” Tonight, I tossed and turned for 2 hours while my fiance’ just lays next to me snoring; sure, I could wake him up and make him suffer with me, but that is selfish plus he works to provide for us, so I guess he needs the sleep more than I do, but it sure would be nice to be able to talk these things out instead of blogging them.

I have a mattress that can elevate the head, it helps with migraines and sometimes my upper back (then I gotta deal with my lower back and hips hurting), but tonight my upper back is hurting and I am not even gonna use the head-elevation because lately it has been making my fiance’ back hurt in the morning; which sent me down the dreaded “rabbit hole” of the uncertainty of a future together: What if I become bed-ridden, what if he has to help me with everything more than he does now? That isn’t what he signed on for! It isn’t fair to him. I know he made a commitment to me and he constantly reminds me of it anytime I start crying and freaking out about how much pain I am in and the fears that sends into me about how uncertain my life and future are; I just don’t want him to have regrets or resentments. I love him, I really do, but when these fears kick in, I go into flight mode and tend to push him away, thinking I am saving him from being stuck in a sucky future with me and my damn disability. How can I expect him to accept it and what it does to me, if I cant even accept it completely myself?

If there was a pill created to make me “normal,” like everyone else in society, I would take it! Even though I also feel like having my disability has made me a well-rounded, wise, empathetic, compassionate, supportive, loyal, passionate person. Does it make me a bad person? Why is it I can be a support system and cheerleader for others with disabilities but yet I cant even accept myself completely? Does it make me a hypocrite? Maybe its just the pain talking; well the pain and the damn devil. I need to really work on myself and loving myself for me; whole-y and completely. Maybe after my surgery to fix my rods, maybe my pain will be better, and I can start being happy again. One can only hope.

Intro to Jamie’s Life (October 2016)

My Name is Jamie Elizabeth Cormier. I am 28 years old from Southern Louisiana; I guess that makes me a “Southern belle,” except one problem: I am far from beautiful. Oh, don’t get me wrong, I don’t have low self-esteem; I am okay to look at, I got a good “head on my shoulders,” a fun personality,I am “down to earth,” I can be “tom-boy” and “girly-girl” (depends on my mood of the day.) etc, but when you look at me, you will not see a “smoking hot babe” (unless you talk to my boyfriend, but he kind of has to say that,) no, the first thing you will notice is a huge hunchback or the “hole in my neck,” scar I have from a trach I use to have; but those are later in my story.

I was born 2 months prematurely at Women and Children’s Hospital in Lafayette, LA on May 5, 1991, at 10:36 a.m. I only weighed 3 lbs. 6 oz. and only 16 inches in height. My entire first month was spent naked in NICU with wires and tubes hooked up to me, away from my mommy and daddy; how traumatic for a little infant!

I was able to go home for maybe 2 weeks (if that much) in my second month before landing back in the hospital, throwing up food and not keeping any feedings down; was diagnosed with Pyloric Stenosis (which is A condition in which the opening between the stomach and small intestine thickens) and immediately had stomach surgery (I even still have the scar to prove it). I also got diagnosed with Ehlers Danlose Syndrome around my second – fifth month (not sure exactly when), however, we do not know what type it is due to the fact my parents did not complete the genetic paperwork testing stuff or whatever; to this day I still am pretty clueless about this disorder of my life. In my 8th-10th month, a curve was noticed in my spine and was later diagnosed with Scoliosis.

Despite these diagnoses, my parents insisted that I have “a Normal”, typical childhood and for the most part, I did: Sure, I didn’t always reach milestones on time, but my parents, especially my mom, never gave up on me; nothing like a determined mother. My parents disciplined me, the same way they disciplined my older brother, they didn’t let me use my disability as an excuse to get away with stuff and they also didn’t want me to become spoiled; they wanted to keep me humble and “down to earth,” however, the rest of the world didn’t get the memo and sometimes strangers would spoil me with free cookies at the supermarket, buy me a candy or a snack cake, my favorite memory was at the yambilee festival: I was trying and trying to throw a ball to win a prize, the carney who had only had one arm, sympathized with me, and gave me free throws until I was able to win the prize I wanted; he even signed it “Bear, the one-armed bandit,” and I told him when I read that, “you aren’t a bandit, you gave me free throws, that’s nice…bandits aren’t nice. You are Bear, the teddy-bear man.” LOL.

 I went to preschool (however during this time, the only children allowed in preschools in public school was early intervention kids who needed “extra attention,” )–then later mainstream Elementary, Jr. High, and High school;  learned potty training, lost baby teeth, didn’t learn how to ride a bike (only because I think my parents didn’t want to traumatize me if i did fall and hurt my back. I was scared, so why push the issue.), my older sibling and I fought as most siblings do–pulling pranks on each other, tattling, etc. I made friends, I got bullied and teased because of my Scoliosis, I was in girl scouts, I went out on weekends. I may have not looked like a “normal” girl, but I had all the same experiences, feelings, emotions, trying to figure out life,etc.

I won’t go into all the details of every little aspect of my life. In 2012, I got my “miracle” surgery after going all the way to St Louis, Missouri to meet Dr. Lawrence Lenke (who’s practice is now in New York.)  At this point, my Scoliosis was so severe that my ribs had twisted themselves around my spine, my lung capacity was only functioning at 18-22% I had to spend 7.5 months at Shriners Hospital for Children-St Louis for what is called Halo Traction. It is a procedure they do to try to straighten spine before surgeries. I had my first phase of surgery on August 16,2012 and it was over 12 hours long and he had to break 10 of my ribs just to get to my spine. A week later, Even though I had doubled my pulmonary numbers while in Halo Traction at Shriners, and was functioning at somewhere over 34%, I had developed Pneumonia and had to get a trach put in. I kept the trach even after I returned home, and it wasn’t removed until February 2013, after I had to go through sleep study and now sleep with a CPAP machine due to symptoms similar to sleep Apnea. My second phase of my surgery was on September 20, 2012; it is one way I remember my cousin’s little girl’s birthday, because I remember coming up from surgery a few days later, and asked if my cousin had had her baby yet and if everything had gone okay. Even high on drugs, I was always worrying about others. LOL.

I returned to my home state of Louisiana around Mid October, I was able to participate in some Halloween festivities, but not much, because I was still in massive amounts of pain and still on lots of pain medicines. Now, 4 years later, I have resumed college, driving, and being as independent as possible–chasing down my dreams of changing the world for the better for special needs with a degree in Special Education, but that doesn’t mean I am definitely gonna be in the classroom; I do still have lots of pain, especially in the cold fronts, rainy weather, etc. All I can really do, is just take one day at a time and try not to really stress about the future, because it makes me depressed. Like they say, One step at a time, one foot in front the other…baby steps. I know that God, my lord and savior is in control and as hard as life is and its tempting to really ask if he is truely there, I have to trust and believe in my catholic religion that I was taught, that he is there, and is guiding me. I just have to be patient, still, and quiet enough to listen..good luck with that quiet thing, when is my mouth never running? LOL.

Anyway, thats somewhat about me..I could write a whole book, actually I did, its just not published yet. Lol.

Anyway, God Bless.

-Jamie