ADA, Adult, adulthood, Adulting, Infection, Infections, medical, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine

Disability Journey: update- No More infection!!!

I am almost at a year post-op. During the surgery, it was discovered that the broken rods that were being replaced had gotten infected, causing an infection throughout my body and I was put on IV antibiotics for 6 weeks post-op, then switched to oral antibiotics- ever since then, I had been on the oral antibiotics. 
I was due to go to bloodwork in March, but due to COVID, things got pushed back and hard to get in to go do the bloodwork until almost 2 weeks ago.  Finally, almost 2 weeks ago, I had bloodwork done to send off to the Infection dr in St Louis to see if I still had the infection in my body. I hadn’t heard anything, so I decided to give a call. They just called back and said my labs were all clear. No More infection!!! woot-Woot! No more antibiotics! ðŸ˜€ yahooooo! Break out the champagne. ðŸ˜› haha.

ADA, Autobiography, Chronic illness, Chronicillness, creative writing, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Kyphosis, medical, memoir, Mom, parent, parenting, parents, Parents of Disabilities, Physical Disabilities, Relationship, Scoliosis, Special Needs, Spinal Deformity, SpinalDeformity, Spoonie, Spoonies, story, Zebra, Zebras

Disability Journey: through Mom’s eyes

While I was working on my autobiography about my life (still a work in progress), Mom contributed the following chapter for it; Enjoy. 
” South Louisiana knows how to eat, drink & party.  Life was pretty easy for me growing up. I did my share of partying in my teen years.  Life should be a party, but we’re not always the guest of honor. Sometimes we must take our places in the back of the room. Jamie taught me that life is not fair and we are not perfect. I felt guilty and still do sometimes that my daughter has to suffer so much, to teach me and others about important things in life. 

During Jamie’s 1st year of life, words were spoken to me by a doctor that have haunted me to this day. He told me that he could just look at her and see that she wasn’t normal. I am thankful for these words, though, because they opened my eyes. We have all been created to be different, but we are normal. What we are is what God intended us to be, therefore, it’s our normal.

Jamie has such a strong personality with the ability to win hearts, but unfortunately, trying to fit in has made her heart somewhat hard. I always wanted her to be tough. As a female, I knew she would have to be strong; being female with a disability, she needed to be extremely tough. I never wanted her dependent on anyone. She learned well, she hates to ask for help. She hasn’t learned to balance her strong personality and independence with her ability to teach people as well as she has taught me.

A lady that had a hurt back shared with me what Jamie did for her life. During the time Jamie was in swim therapy, this lady was also receiving therapy, but she was having a tough time adjusting to her injury. She was angry, in pain, and feeling sorry for herself. Then comes Jamie, this little ray of sunshine with a smile that would light up a room. It was because of Jamie’s disability she found the courage to not give up. As the saying goes, “She put on her big girl panties and told herself, if this little girl can have such strength to deal with her pain, shame on me for the self-pity.”

She had such an outgoing personality when she was young. Ronald & I brought Jamie to a wedding for a pool playing friend of his. Ronald knew the bride, groom and a few of other people. I knew the bride & groom. Jamie didn’t know anyone. She worked the room like a politician running for office, going from table to table at the reception. By the time we left, almost everyone in the room knew her name. How does society take you from the point of being a social butterfly to the state of almost wrapping yourself in a cocoon? I hope one day, I can see the self-confidence she once possessed shine through again.

Jamie started preschool at 3 years old. She still often tells her preschool teacher, she would like to go back to that time in her life. She was so happy; rarely did she complain about pain. She was in preschool for 2 years. The coordinator wanted her to stay for another year. Ronald and I decided she needed to be pushed through to kindergarten.

She adjusted well with a fantastic teacher. At the end of the school year, her teacher shared with me, how she was apprehensive to have Jamie in her class. Unsure how Jamie would handle the class setting. With tears in her eyes on that last day, she said, “It had been a tough year, the class had challenged her, but because of Jamie’s smile, she had the ability to not give up. Jamie’s disability helped carry her through the year.”

When Jamie was about 5 years old, we took a trip with my niece and her children to Texas to visit my sister. We stopped for fuel. Jamie was told to stay in the car with the others while I went inside to pay. My niece needed the restroom so she came in and Jamie followed her. Jamie asked for a snack cake, but our plan was to eat when we arrived at my sister’s house. I told her, no, but a little lady looked at me & said, “Let that child have a snack” and she bought it for her. I realized at that time, the world was going to spoil my child.

On separate occasions, years after Jamie went to Jr. High, I met up with former principles of the elementary school. Both shared with me, Jamie would give them a hug, every afternoon before leaving school. Sometimes they may have had an extremely hard day, and her hug would lift their spirit.

In Jr. High, the assistant principal would give her such a hard time. He gave Jamie the name “Jasmine” and that is what he called her every day. She would stomp her feet, saying, “My name is Jamie, not Jasmine.” He would laugh. Getting Jamie frustrated seems to be what most of her friends and family like to do.

Most people go through their entire life not knowing their purpose. Jamie’s smile so often would lift a person’s bad day when she was a child. Being an adult, she finds it a little more difficult to be happy and carefree as she was in childhood. Her pain has gotten worse, therefore, it is more difficult to smile. Sometimes she needs someone to give her that smile and hug her that she so easily gave as a child. The great job we did making her independent also makes it more difficult to ask for help from anyone; even when she needs it!

  Why do we try so hard to fit in? We are all created equal. We have different hopes, dreams, and talents. It is when we try to fit in, we are put into a box. Thinking outside of the box is what makes us truly become what we are meant to be.  Ourselves.

People often tell me what a wonderful job Ronald & I have done raising Jamie. I feel we have been blessed to have shared in her great little life. Her life hasn’t been easy, no life is. Dealing with a disability for a child is more challenging, but the rewards I’ve received, far more outweigh the challenges. Sometimes, I still feel guilty, because the struggles with her disabilities have taught me so much about life. Although I do realize, we didn’t raise her alone.”

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Very rough Emotional day

technically it started last night. It was a bad pain night and I couldn’t sleep. I stayed up till 2 in the morning before sleep finally overpowered me.

I slept on and off. Woke up to feed the cats, stayed up a bit, went back to bed and slept again. had joint and head pain most of the day.

Then the icing on the “crap cake” of the day-

poor david just witnessed a “Jamie Disability Meltdown” Adventure

it started with him asking me to put mayo and mustard on his bread for his hotdogs while he was microwaving the hotdogs…so I did it my way, on the plate and just spreading it with butterknife.

David: why you don’t hold a bread in one hand and use the knife to spread with the other hand?

Jamie:(a bit sarcastic/snarky) because if I hold it in one hand, it doesn’t hold flat, ill squeeze/bend my hand and then you will have squished bread..

David: you can’t hold your hand flat?
Jamie: (again, snarky/sarcastic) No, I cant. its called Ehlers Danlos..remember..that thing I have that makes my joints loose and weak.

David: come here. I’ll show you.
Jamie: (getting annoyed and flustered because I been living with this 29 years, does this dude seriously not think I’ve tried multiple ways to do things?) No. *voice starting to shake and fists start to clench*

David: come on Jamie, just try my way.
Jamie: (finally breaks down and flood gates open) David, I’ve had this shit 29 years, I’ve tried every way I can think of. This was the easiest way.

David: okay. okay. I wasn’t teasing you. *trying to hug me*

Jamie: I know. But still, if you had something for all your life and parents who taught you to be as independent to the best of your abilities, you think I’d just give up? no. this was the easiest and most accessible way for me.

David: I didn’t know. I only been with you 3 years. calm down. its okay. i still love you, you’re still beautiful. calm down. you gonna give yourself a headache.

Jamie: *sniffles and trying to calm down* I already had one to begin with.

————————–
hey if he wants to be future husband of someone with a disability, he might as well see all the ugly sides too. 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️ he wasn’t there for the 2012 episodes-poor mom had those episodes and she didn’t trigger them…she was just in the “crossfire” lol

and then later on another incident involving David happened: we tried to make waffles breakfast for dinner but no cooking spray, so tried to use regular cooking oil, but they stuck and didn’t cooperate so I was put back in that “i can’t do nothing right.” Mood.

I hate days like this where my disability and the side-effects of it, feel like the world is closing in around me and I cant breathe. *sigh* just another day. Things will get better. Tomorrow is another day.

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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.

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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.

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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.

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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. 😦

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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 ❤

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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. ❤