peeks into my life dealing with everyday life and obstacles as well as obstacles of dealing with disabilities and accessibility obstacles, Chronic Pain due to broken spinal rods, living on pain medications, dealing with anxiety/depression, experiencing the newness of love, and fighting for my right to live and love my life in an ableist society.
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.
I awoke this morning to find a bunch of attachments from my fiance’ family; it was of “Baby J-Bird” (Josephine)- my fiance’ 9 month old niece, playing with her new build-a-bear we did with them yesterday. She absolutely loves and adores it. Despite my chronic pain and need for relief and pain meds, and despite my Wound bleeding badly and acting up again, but that is Life and can’t do much about it.
I’d post the video I did of Serenity doing hers, but the site isn’t letting me.
In other news, I finally got my “official” engagement ring. We had one, but it wasn’t my official one that had my initials on the inside of it. Finally got it today 🙂 #SoHappy
Being a “Cajun” girl from central Louisiana, I have a passion for cooking, but sadly I cannot do it often because due to Chronic pain, I cannot stay on my feet long or I suffer extreme chronic back pain afterward.
Today, I was tired of using my crockpot or “baking” meals and David has been cooking for the last few months. I remembered I enjoyed chicken in a mango chutney but the recipe I had eaten last time was with stir-fry and I don’t know how to do stir fry (and don’t have a wok anyway,) so I improvised and made it into a gravy. The first thing I did was cut the chicken breast into bite size pieces and seasoned/marinated them in a mixture of Savory, Tony Chachere’s, Cayenne pepper, White pepper, black pepper, Old Bay Seasoning, ground mustard and liquid mustard (Dijon), some squirt of honey, some brown sugar, a tiny little “spill” of cola-soda, and some minced garlic.
Next, I browned the chicken on the stove. While the chicken was browning, I cut up onions and green bell pepper. Once the chicken was browned, I added in onions, green bell pepper, and some roasted red bell pepper that I had in the fridge, and let it all simmer together.
Once the onions and bell pepper was softened in with the browned chicken, I added in the mango chutney and let it all simmer together to form a thick gravy; however, it wasn’t thickening to how I wanted, so I added in a little pinch of flour.
I followed no recipe. I never follow a recipe. When I feel something would be good in a dish, I just follow my gut instincts. It is like I have a “sixth sense” for cooking. I enjoy it and it relaxes me. To me it is an artistic expression, however, I sure could do without the back aching afterward from being on my feet so long. It’s a whole pain pill kind of night, but the meal was so worth it.
So a lot of People have no issues with Disney movies or children’s programming promoting heterosexual “need a man/prince,” mentality, but as soon as something airs with homosexual relations, everyone that is crazy traditional religious is all up in arms and “grab your pitchforks and torches, burn the blasphemers.” It’s 2019 people, there should be no more homophobia, transphobia, disability-phobia, dwarf-phobia, racism, sexist ideas, or any of that stuff. The old testament was before Jesus’ time, the new testament was around Jesus teachings but actually written by “followers” of Jesus. Who knows, they could have thrown in their own views or maybe when it was translated from Hebrew or whatever language, something got “lost in translation.” I mean, think about it, Jesus hung out with the sinners, prostitutes, the “scum of the scum,” as people viewed them. He taught love and acceptance. Not trying to change their ways by saying “You’re GOING TO HELL!” he did it through love, he made them want to turn from their sins, not try to force it.
Today there was an article on WAFB Channel 9 about a My Little Pony: Friendship is Magic Episode that featured the character, Scootaloo, being looked after by her same-sex couple aunts; Aunt Holiday and Aunt Lofty. First, it was Arthur about Mr. Ratburn and a gay wedding, and now this. People were all pissed about both “It isn’t appropriate for children,” “Protect our children,” “Satan’s agenda,” blah blah blah.
I may have been brought up Catholic all my life, and I still love my religion, faith, and God almighty, but the organization has its own faults ..*Cough* *Cough* Pedo Priests getting frisky with the altar boys or whatever. We are all human, we all have faults, we all sin.
But the media are doing things like this to try to be relatable and give representation to minorities and their families: Homosexuals(The child or the parents), bi-racial (parents or child), single-parent households, being raised by someone other than parents (Grandparents/uncles/aunts/cousins, adopted, orphaned, fostered, etc.), transsexuals (parents or child), those with disabilities. With more representation and showing that these people aren’t weirdos or “freaks,” and that they are just like everyone else and shouldn’t be targeted, harassed, bullied, etc. over stuff they can’t control.
Since a lot of parents tend to shove their ideas and beliefs down their children’s throats, and not teach their kids to not be little assholes, its up to society to also push in some compassion and empathy because there are many walks of life and no one should be bullied to the point of trauma, depression, homicide, or suicide.
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.
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!
The last week or so, I been having stomach problems. First, my fiance’ niece was over here and any change in routine and my stomach routine goes out of wack (constipation). I was hurting more in my back and hips, lots of belching, bloating, nausea, decreased appetite, and gas; so I thought maybe it was due to constipation, however, once I did get back on my bathroom routine, I still had problems continue.
when I am hungry, I get nauseated, and once I eat, it chills out for a little while, unless I overeat, and then nausea comes back. I still have decreased appetite, craving more sweets, still belching a lot, still got a lot of bloating and gas, and at least my pain in my back and hips has returned to its normal-pain levels.
Yesterday and Today, it was BBQ lunch I had yesterday and then I also had red velvet cake today, so my stomach is really hurting and gurgling 😥
August cannot come fast enough. I think that is a lot of my issues- the broken rods, my Kyphosis getting worse again, putting pressure on my tummy. 😦