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!!!
Tag: No insurance
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.
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. 😦
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.
update from last post- April 2019
Just got off the phone with Dr. Kelly’s nurse person (dawn). She said that she hasn’t gotten the CT CD in her possession yet, despite that the tracking on USPS said it was delivered Friday. She says not to worry that it doesn’t mean it wasn’t delivered to a wrong spot, she said more than likely it has arrived, but the mail department has to sort through the mail and then bring it to them. She said as soon as she gets it, she will bring it up for Dr. Kelly to look at and then call me ASAP.
Will keep yall posted. If I haven’t heard back by Wed or Thursday, I will call them back again
Need Revision Surgery #MyGoFundMe #JamiesSurgery #BrokenRods- March 2019
My go-fund me account. Please share around if you cannot donate. Thanks ❤ https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring?fbclid=IwAR1eoT8HJHiIHSc6bX9Ej31bO0mhl5TIETaFEvpw8iXrHhme23ZlKcbbdWk
pain level 100 tonight 😭😭😭😭- March 2019
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
Ughhh! Got Suspended from Twitter (Jan. 2019)
i was nervous to get my gofundme account rolling and so I was “spamming” it every time a celeb would tweet. I was just trying to get noticed. They are famous! they got money! share the wealth! UGH! 😦 so now i am in twitter jail until i can get them to unsuspend me. UGH
Update: I couldn’t get them to unsuspend my other account so I made a new one.
Jamie's Twisted Journey 