messy-little-soul

[messy-little-soul]

Ableism and Representation

This is going to be a personal story about me. I recently had an epiphany about my disability and wanted to share it.

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[messy-little-soul]

September 24 2019

Finally received a phone call stating insurance has approved for gastric emptying study. Was given a number to call and set up procedure. The earliest was October 1 at 10:30am check in at 10am. Have to be NPO 8 hours prior, they'll have me eat a small portion and imaging will be taken every hour. This procedure has a duration of 4-5 hours. Going to have to take my laptop and do my college work at the hospital. I'm grateful for online college.

[messy-little-soul]

September 23 2019

Project complete. Played around with oil paints on shirt with acetone and liked how it turned out. My favorite part is drawing the hair. The only thing I cheated on was the mouth. Multiple times I painted, disliked it and repainted. I just ended up placing the mouth from original printed illustration. Anyways, it is ready to be gifted.

[messy-little-soul]

September 20 2019

Thankfully was woken up from night terror by a phone call with a member of my support group of people who have arteriovenous malformations. We have been messaging wanting to take through phone as when messaging there are a lot of medical terminology and can be time consuming. Getting to the point, we talked for almost an hour both sharing our stories, for me specifically speaking about the daily bleeds, constipation my entire life Literally and the endless tests. Now we both connected so much as most of the things I've gone through, her child has gone through. Grade 4 subarachnoid hemorrhage caused by cerebral arteriovenous malformation, induced coma, cerebral radiation, SEVERE cerebral edema that swelling did not respond to even steroid infusions, Avastin treatment, spastic hemiplegia, severe constipation, bleeding when going, feeling full immediately when eating, seizure, always underweight and the list goes on. She informed me how many doctors brushed off the thought of the arteriovenous malformation playing a part on all the symptoms when in reality it was all connected. Having done a lot of testing, it was when the gastric emptying test to show motility is when they found a bunch of AVMs, later being diagnosed with HHT, hereditary hemorrhagic telangiectasia. I informed her of upcoming testing and was told that the right direction to start. She is a complete advocate for her child and I applaud her for that. At times when you want answers and a lot of testing, sometimes we are consumed in treatments/testing that often we forget about the patient. Her story impacted me. There are many times I know of people who are lost in the medical world with no answers that I want to advocate for them but at times when you are consumed by nothing else other then medical things all you want is to be completely free from it. As I was hearing her story as how it all played out I began to think that the same diagnosis was going to be given for me. No matter the diagnosis, I would finally have an answer but honestly that is a hard pill to swallow when you badly want them to find AVM'S or neuropathic dysmotility rather than ongoing testing and trying to find other specialists willing to solve your case. Having a rare disease that there is limited information about is hard to live with. Well, going to drown myself with artwork and college stuff to hopefully distract me for the upcoming testing that is going to come.

[messy-little-soul]

September 19 2019

Yesterday was filled with finishing sending emails, phone calls and texts from a couple of members from admissions at Independence University. I finished 20 quizzes prior to being officially accepted into the program and was contacted and told that my tablet would be ordered and sent right away. I had filled and sent a form requesting BMCC transcript to be transferred to UI so I could get the credits for the classes that I took so I don’t have to retake nor pay again. Which I just received a call from UI stating they've received it and now finalizing. Yesterday finished with the whole process of FAFSA, UI financial aid, Parent Plus loan and EduPlan loan. My mother agreed that my rent money should go directly to making monthly payments at the same time attending college so that both interest rate paid and total cost of degree doesn't increase. Excited and nervous for this.

[messy-little-soul]

September 17 2019

Let the painting process begin!

[messy-little-soul]

September 17 2019

Gastrointerologist advised me not to worry or stress as that takes part on me straining when going. She reviewed my colonoscopy images and said everything was normal. She reviewed my abdominal xray and noticed whatever that metallic thing was that appeared on both xray and ct scan was not there. With more questions then answers I was told next step would be to look in my small bowel. With a history of AVM's she said perhaps I might have some in my small bowel. So she is sending an order for gastric emptying test, pill capsule endoscopy if insurance approves and an additional medication to take with Amitiza. Progress is being made. Just hung up the phone as I spoke to admission coordinator at independence university as she helped with getting my credits from BMCC to get transferred. Made an appointment for freshman orientation. Things are running smoothly.

[messy-little-soul]

September 17 2019   Walla-Walla Providence Gastroenterology

Let's see if the gastroenterologist has a solution for the GI bleeding, or if she'll tell me it's just something I'll have to get use to as doctors say that when they have no clue whats going on.

[messy-little-soul]

September 16 2019

Today I signed myself up to get a bachelor's degree in graphic arts through Independence University. Today focused on completing FAFSA, filling out admissions, payment plan, courses I'll take layed out in a chart. Total of 183 credits needed. Moved myself from drowning in medical debt to college debt. So excited to start. Online education best fits my lifestyle. Earning a degree on what I love to do most. Classes start soon and they'll provide me with the equipment needed (tablet, computer and software).

[messy-little-soul]

September 15 2019

A whole lot of back and pelvis pain from window tracing I was able to start sketching basic layout of the illustration onto a canvas. Now going in different fine point size markers making fine strokes for the hair. Once hair is done next comes the painting to which I'm most comfortable with watercolor but will use oil paint to challenge myself.

[messy-little-soul]

September 14 2019

Artist on a budget, window and sunlight works great as a tracing board. Had to wait for morning to come to start this process. Bumping to music, creating artwork and looking at nature. Three things that takes me to my happy place.

[messy-little-soul]

September 13 2019

One step closer to finish product. Sketched used adobe illustrator to get my idea down which originally was different but played with many colors and loved the combination. There are many steps I take before finally starting on painting on a canvas. Time to trace basic outline, measure and start sketching. The challenging part will be mixing colors to get similar colors as I planned out and use oil paint. Something new.

[messy-little-soul]

September 12 2019

This book is not your common self help book that is sugar coated with cliche quotes that I take in with sarcasm. I respect those you tell me the truth or say things how they truly are without needing it to sound nicely. This book has helped more than dare I say therapists and crisis workers whom tried to help in many times I've just wanted to check out in life. Highly recommend this book. Health check: Amitiza medication was increased which did help, i went three days with no problem going then went four days with no out put. Gave in to having cinnabons for a couple of days and payed for it. Excessive bloating, stomachache the feeling of my colon being torn when I finally was able to have a bowel movement to no surprise I knew the bleeding was to come. The only diagnosis the gastroenterologist slapped on my chart for prescription approval was irrital bowel syndrome for now. I've been just trying to avoid any medical places for a while to give my mind and body a break which has been nice.

[messy-little-soul]

September 9 2019

Tough day with sudden waves of migraine, heart pulsing fast, sudden feel of exhaustion in my muscles including my good side and that sick feeling I get when I have any caffeine it just makes me sick. After a while on working on two projects I took my prescription pain killer and layed on the couch hearing the tv, mother cleaning and the guy we hired finishing remodeling the bathroom. Today physically wasn't a success but I was able to occupy myself. Working on a project that I want to give to a dear friend of mine. Another thing I've finally came to the conclusion of earning a degree online on graphic design and business. I can work on my own pace, possible in the near future sell artwork, take commissions and own a little shop that will provide art lessons. A little lady can dream.

[messy-little-soul]

September 3 2019

Was able to only take a video and some pictures only of my dog before my phone battery died of our camping trip. My family and sister in law's family went camping somewhere passing pilot rock. On our way over there I was also able to personally see a peacock, which was breathtaking; it was so beautiful. After setting out tents, to which I shared with only my dog, we went on an exploration. There were a lot of things we did, the next day I wanted to continue the adventure but was low on energy and just layed in the truck while the others continued on. Today I am still recovering and sadly so is Mr. Gucci, my brothers pitbull; old ankle fracture becomes inflamed when he has too much fun.

[messy-little-soul]

August 30 2019

Tough as a wild sunflower and still standing tall through it all. I am glad to have another year of life. Although life has dealt me some rough cards, I am forever thankful to all of you guys whom have done even the littlest things to encourage me and know that I am not alone. These are items I have received today. The most unexpected gift of all was a friend of mine came and woke me up. She surprised me with cupcakes, morning breakfast and some items to which the softest blanket I’ve ever felt was was gifted to me. I want to thank all of you for being in my life, the birthday wishes and hearing me out when sometimes life get rough.

[messy-little-soul]

August 29 2019    Good Shepherd Health care

Want to get abdominal x-ray done and over with.