Uncategorized

Rewrite the stars- Greatest Showman song- relates to my relationship with my fiance’

Last night, I was on my pain meds and as usual the drugs made me a sappy, hormonal, emotional wreck; especially when all they do is make me tired and don’t actually help my pain, and as tired as I am, I cannot get comfy enough to actually go to sleep- which causes me to become irritable, frustrated, and emotional. Warning: Below, is how I feel on those kinds of days. You’ve been warned.

Don’t get me wrong, I do absolutely love my fiance’ and most of the time I cannot absolutely at all fathom my life without him, but on my really bad pain days when I am cooped up in the house on pain meds and can’t stand my own life, I relate to Zendaya’s lyrics of the song.

He is so positive and confident about us, and I am like that girl (because of my age difference and looking like a kid, and my disability- the “mountains,” and “doors can’t walk through”) and what the world thinks. and just waiting for him to realize that it is hopeless and impossible for us to truly be happy together. I am always thinking “he didn’t sign on for all these issues: Me hurting all the time, me lashing out at him because I am hurting and frustrated; because I’m irritable.. How can I expect him to love me when I don’t even love myself?”

Maybe he’ll teach me a thing or two, or maybe if I have such idle time, pay attention to the negativity.
It’s a lot of self-esteem issues and idle time, pain meds causing depression, being bullied from a very young age (5 years old)- it’s hard to escape the “voices” of my past, but I am working hard on it because I do love him and I know he loves me.

Uncategorized

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.

Me: Okay.

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.

Uncategorized

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.

Uncategorized

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. 😦

Uncategorized

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, and depression get the better of me. I will continue to try to do better in the future, David, and I am so sorry. 😦

Love,
Jamie ❤

Uncategorized

Happy Birthday to my Fiance, David-May 2019

It has been 1 year 7 months and 5 days since we got together on October 24,2017. I had just gotten out of a relationship with my ex and you contacted me on that dating site and wanted to meet. It so weird it has only been a year when it feels like longer. We’ve been through thick and thin, fires, turmoils, arguments, my meltdowns, etc. You taught me new things, you brought back some of that old spark I had lost. When our relationship going good, its golden, but when its bad, it’s like two volcanoes in competition of eruptions- gotta love both being stubborn Taurus bulls. LOL

We both love to cook, we both like to laugh, both like theater productions, sure i take some of your jokes the wrong way, and sure I am not into gaming. But you love me despite my disabilities and all; you are supportive, helpful, creative, generous, got a good heart, am I saying you are perfect? No. But neither am I? We are all flawed humans, but we can work together to build each other up and bring out the best in each other.

Happy Birthday, Baby. I love you. ❤

Uncategorized

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.

🤷‍♀️
Uncategorized

Another Twisted Turn in “my Tale”-April 2019

So for many of my followers on Facebook, you probably are aware of a wound I have been fighting for over 1.5 years and if you don’t follow me on Facebook, then you aren’t aware of much since I just started really keeping up with my blog.

Anyway a little backstory, May 2017, I awoke one night with my back feeling swollen and hurting. I thought a rod had penetrated my skin and was broken (turns out there were broken rods,) I had an abscess (boil) on my back, which, a day or two later popped, and ever since I been fighting with an open sore wound that comes and goes.  For two months, I saw my GP, after a few rounds of antibiotics and it not healing, she referred me to Wound Care.

Wound Care has packed it with mesalt, cauterized it, packed it wound-gel, and even surgery to clean out/take out the “sinus tract.” The wound still comes back. Thankfully, we don’t think the rods have been infected (hopefully they aren’t wrong).

Anyway, It had behaved for over a month or two and I thought for sure it had decided to finally start to heal up. Then tonight, I noticed the area around it felt swollen around it (fluid build up) and was oozing slightly with a tinge of blood too), and that it itched, So I had my fiance’ look at it and sure enough, as usual, the hypergranulate tissue poked through the wound  and reopened it. AGAIN! So will call wound care in the morning and try to get in. *SIGH*

#NeverEndingStory #StoryofMyLife #MyBodyHatesMe

Uncategorized

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