my fiance knows how to irk me and push my buttons but I still love him ❤
Medical Headache, incompetence, and idiotic rules
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 disgusted and embarrassed by this! Boycotting my little pony? its 2019..ugh
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.
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.
Haters can “move along,” (older youtube video)
A body like a rollercoaster poem-(old piece)
A Body Like a RollerCoaster:
A body likes a rollercoaster
Lots of twists and turns,
A winding track,
Many different options to explore,
Many different twists of the curves,
Twisting one way,
going up a giant incline,
Slowly climbing up, up, up, to the very top,
It can be quite a tiring experience; that long trek
Then the scary part, the drop!
You drop down,
going faster and faster,
gaining speed as you drop down the tracks
Another twist in the tracks,
then a loop upside down,
You start screaming!
With lots of ups and downs,
“Bumps, stumbles, and falls,”
“bruises and scars,”
Not just physically,
The “rider” (patient) can also be traumatically scarred too,
Turning life upside down,
Like loops on a rollercoaster,
Making the victim,
The patient, plagued with this disorder
The limiting disability known as Scoliosis,
scream and cry,
tired and emotionally drained,
“Let me off now,
Before I die.”
The last week-Stomach problems-May 2019
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. 😦
I’m sorry! an Open letter to my fiance, David- May 2019
Sometimes I wonder why my fiance stays with me: mean I never wanna cuddle/love on him because I am either hurting or it tickles (I’m really ticklish); I am always on my phone/computer/or tablet(The same things I got annoyed with my ex over- not spending time with me), then I get angry at him for the stupidest shit. Tonight I lost my anger with him over a joke.
We had been “play- bickering” before the “joke,” and I guess I was already a little irritable from that and then he was teasing me because I had deflated my helium balloon from my birthday and had sucked the helium and he said “you already act like you don’t have any brain cells. You killed them all.” That is a trigger for me, because I already feel like I don’t measure up because everyone I graduated from high school with has already gotten multiple degrees or have careers and I just have associates under my belt, struggling to get my bachelors, and I struggle very badly with math; So when he said that I lost it. I got so mad, I threw a can at him, I don’t even remember what the can was, maybe it was canned Air that he uses to spray his computer to dust it- I don’t remember, but he got his feelings hurt and lashed out at me for it and I totally deserved it.
We made up now, but still I feel so guilty about It. I mean all he does is try to love and have fun with me, and I take things the wrong way. He cooks for me, he helps me when I am hurting, he even started a go fund me for my surgery. He just says stuff without thinking sometimes He’s human and flawed like all of us, but at heart, he is a good person. I do love him, but my anger, anxiety, low self-confidence, and depression get the better of me. I will continue to try to do better in the future, David, and I am so sorry. 😦
the “latest and not so greatest”- May 2019
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. 🤷♀️🤷♀️🤷♀️
Latest update in “my twisted journey” called Life- April 2019
I’m just got off the phone with Dr. Kelly’s office in St. Louis. They offering two surgeries. One to just revise surgeries. And one to take a bone out of my spinal column area and make me straighter. Longer surgery would be Sept. Smaller surgery would be August.. Longer surgery would give better balance. She’s gonna talk to dr Kelly again.hes out of town right now, so it’ll be sometime next week. Smaller surgery , if I’m not balanced enough, rods could break again. But longer surgery is messing near my spinal column and could paralyze me #decisionsDecisions 🤷♀️🤷♀️🙏🙏 I dunno. I mean id like to be straighter and not risk rods breaking again, but also like being able to walk and stuff. And also don’t wanna risk another trache.