One Mountain conquered, but life dealt me another summit to excavate.. *Latest Update*

People often say “The world is a rainbow of different communities spreading love and good, frolocking with others. There are the ones who are the pessimistis who see their world as a never ending burden of turmoil and misery, and then the type that are the “fakers”- The ones who walk around all jolly and happy and wearing a complete “mask” in public. That is me.

I guess you are probably wondering “what is this going on about? The title says ‘One Mountain conquered, but life dealt me another summit to excavate.” What I mean by this is, I had my surgery to fix the broken rods and it was a major success, however during that surgery another issue was discovered; an infection in my rods.

Below are my newest X-rays.

To combat this infection issue, a pic-line was placed in my left arm while I was at Barnes Jewish Hospital in St Louis, Missouri, and put on antibiotics via IV infusions for 6 weeks and then will be switched to an antibiotic pill indefinitely until the doctor sees fit to get me off said antibiotics.

A week after my surgery, on Aug. 21, I was discharged from the hospital to go back to my home in Louisiana so that Medicaid would cover my IV antibiotics; if not, We would’ve had to pay out of pocket for the treatments and it was $120 a treatment (6 weeks of treatments, 2 x a day- so $120 a treatment x2 times a day x7 days x 6 weeks = $10080, and then if we stayed in s Louis but not at the hospital (haven house)= $50 a night x 6 weeks at least = $2100..yeah, I think we made the better decision by coming home…LOL)

Now 2 weeks and 4 days post-op, I awoke to my IV tape rolled up, the pic line area exposed (I am thinking that I was scratching in my sleep). When my fiance went to clean it up and re-tape it, he noticed that the pic line was out more than the doctors like, so we rushed to our local E.R., Lady of Lourdes Hospital. Once there, they were swift about getting me to the back; a nurse, however, decided to remove my pic line from my left arm (which was covered in red splotches due to allergic reaction to the tape) instead of leaving it for the specialist to push it back in. Hours later, the specialist showed up and had to re- stick me for a new pic line in my right arm now, when she said that had the nurse previously not removed it, they could’ve just pushed my other one back in. Now I am back home and my right arm is sore and throbbing because the lidocaine sedative is wearing off and my muscles are aching.

Oh well, I did what I needed to do and I will “grin and bear” this burden I have to deal with for 6 weeks until I can switch to my pill version of antibiotics. I cannot wait for this darn pic line to be out of my arm, but all good things come to those who wait. I will pray for God to grant me patience to deal with it.

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So annoyed with rude people…

I had my go fund me page since Jan or Feb. people have been generous and I thank them (especially the author of “Wonder” who generously donated $1000.) However, I share it constantly on all my social media platforms and a few people share it, but today made me so sick to my stomach.

I shared it a group on for people with similar disabilities and one of the members felt it was her responsibility to “set me straight.” – Evidence down below: Sally Hockman is a snooty and rude individual. She doesn’t know my story. She doesn’t know what I deal with on a daily basis. “Many people have broken beg for money,” but do these people happen to have great health insurance or doctors who take no matter the state? ….some people aren’t lucky!

A wrecking ball of bad news; my heart broken and demolished into a zillion pieces.

Today, while in the waiting office of my pain management dr, I was scrolling through facebook, when I suddenly saw something that ruined my entire rest of my day; A friend of mine in St Louis, Missouri, Mr. Mike James, passed away overnight.

I met Mr. Mike James in 2012 while I was in halo traction at Shriners Hospital for Children-St Louis; he worked at Cabela’s and the company would come to the hospital once a month for “Cabela’s night” where their volunteers would bring educational things about Native Americans, animal trapping, hunting stuff (no weapons) just pictures or like duck calls. It was a highlight of the month for all of the patients to enjoy.

I was one of the oldest patients there, so the adults would often talk to me about “Where I was from,” “what I liked to do,” “If I had ever been to a Cabelas,” stuff like that, and a few of them got close with me because of my “spunky attitude,” these included Mr. Mike James, his wife Nancy, and our mutual friend Beverly Duval. They were there through it all- my surgery, my recovery until I went home, when I went back for checkups, when Beverly hosted me for a week for spring break, my first boyfriend, and they had just met my fiance’ and he approved of him, even liked him, and planned on attending the wedding next year. Now he’ll just attend in spirit.

One week and a day ago, we were having dinner with you and your wife. One week and a day ago, we were laughing and chatting and catching up, you and my fiance’ were talking “hunting, guns, Trump, politics, all kinds of things.” Plans were made to attend my wedding next year, talks of us thinking of possibly moving near you and your wife, plans for you and my fiance’ to go hunting together. 
Now you are gone, back to heavenly home and everyone left behind are in mourning. 
You were one heck of a guy, Mr. Mike James. I will miss your comments on my facebook, I will miss seeing you when I go up to St Louis. It feels like a bad dream that I cant wake up from. I wish I could just wake up and this nightmare not be real. It feels like someone punched me in the stomach. it feels like a giant lump in my throat. It feels like my heart has shattered into a zillion fragmented pieces. 

😥 RIP Mr. Mike James. I know you def. earned your angel wings. 

❤ Fly High.

The latest “Twisted Tale” in my journey called life; Surgery coming up fast!!!!

so the latest on my back: I saw dr. Kelly today. He is very optimistic. His plan is if my rods aren’t infected (we did labs), he says he will just open the incision scar where my rods are broken at, clean up my wound, and add in some “dominoes” and add in some extender rods.” It will be “Simple and sweet,” as he put it. 

:p The date is the same, August 14, but I need to be here by the 12th because I need to go to get my central line valve put in on the 13th. If he does what he wants, “simple and sweet,” he doesn’t think I will have as many complications like I did last time bc last time I had broken ribs and pneumonia from that which led to trach, blah blah blah…the framework already there, this is just some maintenance repair! LMAO. 
But whatever God’s will, will be done. 

Share my go fund me please!!! https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

Please help out! Go Fund Me Page

please share and pass around on all social media platforms. My surgery in August is coming up fast! Preop is July 16!  Thanks.

https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

Much appreciated, Thank you!!! 

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.

Fun last night; Sore today

The wedding for my cousin was so much fun. The ceremony was beautiful. The bride was gorgeous. The celebrant(priest) cracked some jokes and made the audience chuckle. The reception was great with awesome food, great music, a beautiful cake, lots of fun and dancing, a cute cardboard cutout to take photos in, a fun and creative “send off for the bride and groom,” and of course an open bar! All the makings of a great Louisiana Cajun wedding.

For me, even though it wasn’t my wedding, I still had a great night. 1.) I wasn’t hurting for once, 2.) My stomach cooperated which is very unusual for social events, 3.) I got to see my godson and his family, and 4.) I danced and sang almost the entire night! I danced with my younger cousins, older cousins, strangers (to me- they were probably family or friends of the bride or friends of the groom), Mom, and my wonderful fiance’ David danced with me a few times for slow dances and one fast song, “Brown eyed girl,” (which is usually me and mom’s song, but Mom was nowhere to be found when it came on, so I had a substitute. LOL)

However, today, I am paying for all that cutting up and fun, as I am sore to the max! I slept till noon, soaks in the tub didn’t help, had to give in and take my pain meds.
I can’t wait till after surgery when I can have fun and not be so sore the next day. I missed having fun like that!