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.
As you all are aware by now, yesterday I went to Vidalia for a pain management appointment and found out that I have Osteoporosis forming. Today, I called my Surgeon in St Louis, Missouri, to find out if it would affect my surgery.
Missouri office: Can they fax it to the results to us?
Me: I’ll call and ask.
Vidalia office: we need a release, however, we can send the results to your referring doctor.
Referring Dr office: Oh, we can’t fax other doctors’ records.
*Facepalms* This is why the medical field and disabilities suck. Can’t get help, what so ever. You are a freaking Dr. Office, do your job!
I called the St Louis office back and explained the situation and they are going to call Vidalia and see if there is something they can do.
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 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. 😦
the latest update from my Scoliosis Journey: St Louis (Dr. Kelly’s office) called. He still bouncing around about the simpler (just fixing surgery) or the bigger surgery. I told them Dr. Lenke said he was gonna talk to dr kelly and how he (Dr. Lenke) suggested the smaller surgery. Apparently, he hadn’t talked to him yet, or the nurses weren’t updated. 🤷♀️The nurse made a note and said if we do the smaller surgery, the date she has is Aug. 14(two days before the anniversary of my surgery in 2012) and the pre-op appointment would be July 16. They want me to do a pulmonary Function Test (I am having them fax the orders to my gp- because my Respiratory Doctor said and I quote “didn’t see it as a necessity” because more than likely they would “do one before surgery,” and I “have my CPAP machine this time.” 🙄
in other news, I went to a pain management appointment on Monday, April 29. It was okay aside from spending all day there. It was just a consult. Typical dr. appointment- xrays, weight, and height, looked at my back, tested my reflexes, all that boring medical stuff. lol. I go back on May 28.
Also, Still fighting with that stupid wound on my incision- it opens, almost fully closes, then reopens. It’s oozing bad the last few days, going to wound care today at 1. The wound probably will keep giving me issues until I get the rods fixed. 🤷♀️🤷♀️🤷♀️
After staying up till midnight, then going to bed only to toss for two hours uncomfortably, I came back into the living room while my fiance’ slept. Normally, he’d still be up as well, doing his best to help get me comfortable(sometimes its out of either of our control), but he has to work the rest of the week with a new job he just started so I put on a “brave face” and hid my pain from him. My wound that I have been dealing for almost 2 years feels a tad swollen and it itches around it. It looks really red in the pictures I take myself, but again I don’t want to say anything to him because knowing him, he will ditch the job to take me to ER or wound care center. I am also hiding it and not saying anything to Mom, because she is busy with planning a baby shower for her niece Heather. doesn’t have time to worry about little old me and my wound. I know that I need to get it seen about and it could be dangerous, but at the same time, I hate being a burden. 😦 it’d be so much simpler if I wasn’t disabled and didn’t have this stupid wound. I am conflicted and hiding something that could end up being very serious. I know that once they read this (if they read this,) I will get some sort of lecture, but this is my feelings sometimes; that I am a burden. If it wouldn’t be for my friends and family, I’d probably have “offed” myself years ago during middle school or high school. There are times when doubt creeps in.
1.) With my fiance’: will never have a normal life–they may not have kids, they may be stuck taking care of me the rest of their life, I won’t be able to cater to them like a wife should, etc etc. Why does he love me? Why is he here? He could be with anyone? Why does he want some virgin girl with barely any boobs and a little butt, and short as all heck with disabilities out the wazoo?
2.) My parents: I feel like sometimes I am a disappointment(more with my dad). I don’t know what dreams they had for me (some parents have their kids futures all planned out). I am pretty sure if they had a plan for my future, it wouldn’t have included all these disabilities, dr appointments, and “curve balls of life.”
3.) I am really immature still. I am almost 28 and still love dress up, cartoons/kids shows and movies, the Children’s Museum, riding 4wheelers and go-karts and golf-carts, I love animals and dressing them up in clothes/costumes, I still think about my dolls and my barbies. I can still get “in touch with my inner kid,” easily and my dad “rags me” about it a lot. I don’t watch the news at all- I see enough of it on social media and it depresses me (My fiance’ says I need to “get with reality”- No thanks, if reality is watching the news, then I rather live in my little fantasy bubble. I already know things are messed up and crazy in the world. 😦 #ITrustInGod to fix things. My mom seems to get me the best. She doesn’t mind me being immature. Sure there are times when we see things differently, but she doesn’t rag me on stuff I can’t help; like my “immaturity.” Come to think of it, once I reached age 10, was when Dad started trying to get me to “grow up a little” and Mom always defended me saying “let her be a kid as long as she likes.” (I am sure that’s not her feelings now, but she knows I “adult up” and take care of what needs to get completed.) #BestMomAward
4.) Life has beaten me up and I lost a lot of the fun-loving and creative person I use to be. I am more introverted, self-conscious, anxious in public, feel like I wanna hide when I get stares, or when people are rude/discriminatory towards me or someone disabled, I am ready to throw down and fight. I don’t know. I just don’t feel like my old self. I feel like I need to get back to the essence of who I really am. I need that spark and zest for life, back although it is kinda hard when you living on pain meds and sometimes even that doesn’t help. Maybe once I get these broken rods taken care of, maybe my pain will diminish and I can get some of that joy for life back. One can only hope.
I legit want to break down, crying in the fetal position, due to how much pain I am in tonight. My curve is sensitive to the touch and making “creaking” noises. My pain meds don’t seem to even dull the pain anymore. The CT scan needs to hurry and done (found out today that Medicaid approved, so now just to wait to be put on schedule UGH!) So I can get this surgery and get back to a semi-normal life like I had before all this pain! #ScoliosisProbs #KyphosisProbs #Humpback #HunchbackGirl #TwistedSister #TwistedPretzel #PretzelGirl #CurvyGirl #Curvyinwrongplaces #EhlersDanlosSyndrome #EDS #ZebraGirl #SpinalFusion #BrokenRods #NeedRevisionSurgery
my wound care doctor suggested going to ER at LSU med center in Shreveport to just have them look at my back and consult about the broken rods. Mostly a wasted trip..I knew the rods were broken and I was pretty sure they weren’t gonnado any surgery on me; plus the doctor’s name was “dr. Sin” LOL..Never trust a doctor with the name Sin! JK. I am sure he is a great doctor, but I already have my hopes set on Dr. Kelly in St Louis since he trained under Dr. Lenke (who originally did my surgery)
The latest update in the winding road that is my life…. I got a referral to LSU Medical in Shreveport and then also the former care coordinator for the orthopedic surgeon that did my surgery, is trying to get me into the guy that took my surgeon’s position in St Louis, when my orthopedic surgeon moved his practice to NY. Due to neither NY or St Louis takes out of state Medicaid, or Medicaid at all, The only way I can see the Dr. That took my orthopedic’s position in St Louis, is by applying for “hardship assistance.” *Fingers crossed that works.
In other news, my fiance wants to move to St Louis, MO, because he thinks if I am on their Medicaid system, then the ST Louis hospital will have to accept it, plus he is under the impression I’ll get better SSI check (newsflash Hun, the max is $771.00 which I currently already receive.)
I also realized it will be different this recovery time, due to my former physical therapist no longer practicing, I will have to do it through the hospital. UGH!
I also realized I will probably miss my Beignet more than I missed my Mya; If that’s even possible. I love deeply and the thought of once again being away from my own bed, my own apartment, everything familiar and no Beignet to love and snuggle, hurts my heart. I also realized I won’t be in the children’s hospital wing this go-round, so the therapists will probably be tougher, and not as much fun recreational activities to keep my mind off the pain. Well, I guess this is my life punishing me for acting irresponsibly after my first time recovering after surgery. Karma sucks! LOL