I made more slideshows about my life in pictures. I added all my slideshows to a playlist on my youtube.
Link to playlist: My Life Slideshows – YouTube
I made more slideshows about my life in pictures. I added all my slideshows to a playlist on my youtube.
Link to playlist: My Life Slideshows – YouTube
New videos on my youtube: A slideshow of my 2012 Halo Traction+ Surgeries in St Louis, Walking after surgery, and rambling on pain meds after surgeries.
As we are aware, I had re-broke my spinal fusion rods and was dreading facing my parents about it. This weekend, my parents came in off the truck. As soon as they saw me, Dad asked “what happened to your forehead” because that was the first thing he noticed. “Well, you see, there was a incident in the backyard on the steps. I fell…and re-broke my rods.” They didn’t look happy, but didn’t say anything, later they mellowed out and we joked about it. Then I gave them some candy bars I had bought at the store on Thursday after the incident, before they came in, with the joke to David, “I’ll get their favorite candy bars so when I deliver the bad news about my rods, it will be less of a blow…Like…’look, I got yall favorite candy, oh by the way, my rods are re-broke. Oh just eat your candy bars before you reply.” hahaha. To which I recounted that story to them and they laughed. I am so lucky to have understanding and supportive parents with good senses of humor. 🙂 #Blessed.
I also sent the Xrays to Dr. Kelly on friday through “snail mail” with post office saying it should be delivered/recieved on monday. So I will call monday to tell his office and hopefully by tuesday or wed, I will have some news on what Dr. Kelly had to say. I also hope I hear from the genetics doctor soon as well.
So earlier today, I had my appointment with my GP who agreed to refer me to an EDS geneticist that I had found in New Orleans- Great news, right? Right.
later that evening, I was outside helping my fiance’ do some yard work around the backyard and he asked me to go get him some bottled water; should be a simple task, right? Wrong. It ended in me having to go to the ER.
I went into the house, got the bottle waters(1 for him, 1 for me), and started back out the backdoor: Now our backyard door has a drop about 1-2 ft and then the first step. I don’t know if I missed the step or if my ankles/legs decided to give out; it all happened so fast- All I know is next thing I know, I am losing my balance and falling forward and landing face-first onto the concrete sidewalk.
Landing forward, should spare my rods right? Hmm. well, I’ll get to that…
When I fell, I hit my legs and knees and felt like I couldn’t stand right away, I busted my head on the concrete and had a big gash and later a knot, scraped up my right wrist, and had landed on my left ring finger that had started to already swell.
I waited for a little while to see if the headache would subside and I’d feel better. No luck. So we went to the ER. They did a CT Scan (to look at my head to make sure no damage) and a Xray(to look at my rods and back).
The Drs said the finger wasn’t broken; it was a busted blood vessel and ice and rest should bring down the swelling. The CT revealed no signs of any damage or concussions. However, the Xrays were not as lucky: My rods that I just had fixed almost a year ago, from being broken previously, were broke once again! Now the rods could’ve been broken before this incident- After all, I was still taking pain medication on and off as needed and I had an experience months ago while still in the apartment where i had stood up and it felt like a popping shockwave down my back. The timing just really sucks, so now I have to call Dr. Kelly and tell him the bad news about my rods. I feel like I let everyone down again, but I did everything I was supposed to- I wasn’t straining, I wasn’t bending, I was being cautious,, I didn’t get on inflatables this time and I still end up with broken rods. I wonder if my EDS could be a contributing factor to the rods continually breaking? I suggested it to one of my fellow Scoliosis friends who is in a scoliosis group and said there was a girl who kept breaking her rods and getting infections and was later diagnosed as EDS and ended up having her rods removed, so it could be a contributing factor. Hmmm….I don’t know. Seems like I try to do everything right and then something still f** it up and I am back to being a disappointment. UGh. I hate these voices in my head and feeling like I am mentally unstable. Will things ever get easier?
thought of the day…8/10/2020
like for real why do medications cause side effects? Like pain meds help with pain but in the same token, you might end up adding in depression, anxiety, mood swings, agitation,etc. (to which I already have some.)
so it’s like okay..do I wanna deal with pain and possibly just cry to the point of wanting suicide…or do I take the pain medication and stop the pain, but end up depressed or miserable and still wanting suicide for a different reason other than pain- because of emotional impulses and acting like a toddler throwing a tantrum? hmmm.
oh and then lets not forget when I am on pain meds but not sleeping, I tend to “go down the rabbit hole” and spiral emotionally- like right now, I am convinced I have Borderline Personality Disorder.
guess the saying is true, “Idle time is the devil’s playground.”
so here is the latest development in my EDS journey: I am in several Ehlers Danlos groups on Facebook. And they gave me a few names of geneticists who are listed as pediatrics but also do see adult patients with EDS. So I called the one that was named multiple times to confirm that they still do this and they do and also take Medicaid. So I will give their name to my GP on wed. when I go for a medical checkup so they can refer me. #Amen#GodBless❤ might finally be getting answers .
A week ago, July 23-24, David and I went to Bay St Louis Mississippi to go hang out with my “hitler of the respiratory department,” friend Marcela Spraul from St Louis, Missouri.
Marcela and I got close while I was at Shriners Hospital back in 2012. She has become like an older sister/ second mama to me. She called and told me they’d be in Bay St Louis and I immediately googled the directions. It was only 2 hours and 50 minutes from my house, Easy! Way better than the usual 10-12 hours it takes to see her; of course, I am gonna make the trek to go out and see her.
We had a lot of fun and I enjoyed catching up. and I will be seeing her again in September for my checkup appointment in St Louis. They offered to host us so we don’t have to spend money on hotel- Awww! ❤
I love Marcela, even if the beginning of our relationship was a bit rocky! LMAO.
I have a lot of dreams and ambitions, even despite having a severe chronic physical disability/handicap, but with the right amount of patience, determination, willpower, confidence, hard work, and God almighty at the helm of my life, anything is possible.
I will pick one thing at a time and will try to accomplish them all eventually, but one at a time.
Backstory: I was a Shriner’s patient for about fifteen and a half years of my life. Since I was young, all I could remember the doctor saying “We’ll wait until she hits puberty and then see from there about a surgery.” Well, what they were waiting on was to see if my spine would grow. (I had a fusion at two years of age and as my spine would grow, it was supposed to correct itself; well the spine didn’t grow, instead, it kept curving.) When I finally reached puberty, (which was about fifteen or sixteen years old, being a “late bloomer” is so much fun! Not! Haha) the doctors changed the story to “nothing else can be done without paralyzing her.” Well, can you imagine being told that you were going to have this huge hump on your back removed once you became a teenager and hit puberty, then suddenly the story changed and you would now be stuck with it the rest of your life? My heart broke, I cried like a baby; it’s a good thing that one of my besties was there and we went a walk to calm me down. At seventeen and half years old, I got discharged because Shriner’s is a children’s hospital and my next appointment would’ve been after I turned 18 years of age. Since that time I hadn’t been to an orthopedic doctor (almost 2 years), and mom was worried, and she heard good things about Dr. Williams in Opelousas.
My Scoliosis Journey in St Louis, Missouri began on Jan. 2011 after a referral from a local orthopedic dr to go see Dr. Lawrence Lenke (who has since moved his practice to New York,) because my Scoliosis was “too complicated” for the local dr, and “looked like a rollercoaster” (Try living with it, dude!) It usually took a year to get in to see dr. Lenke, we got in within six months!
The initial meeting with Dr. Lenke was very emotional. I really cannot “sing his praises” enough! He saved my life! When he came into the room, he smiled and did the usual doctor stuff: reviewed my x-rays, feeling how uneven my hips were, traced the curve of my spine with his finger, the same old routine to me- I could probably do it in my sleep! Finally, when we talked, I had questions and he answered them politely, honestly, and kindly. There were some I didn’t ask because I am sometimes shy (not very often, but it does happen occasionally: especially if the questions are embarrassing) and were embarrassed by some of the questions. He saw I was hesitant and took the list and read over the questions and gave me answers. He didn’t laugh or make any rude remarks, he made me feel like there were no “dumb questions.” When he was talking he wasn’t saying “if” he could do the surgery, he was saying “when’ so that just filled me and my mom with so much hope that once Mom and I were out of sight in the bathroom helping me change out of the hospital gown, We hugged and both cried it out in the bathroom: Bawling like 2 big babies, but these were different than the tears I shed at Shriners in Shreveport at 17.5 years of age; these tears were happy tears of joy! Mom and I had gotten our hope back! Imagine, being told that you would have this Scoliosis hump the rest of your life and then come to find out, there is actual hope! However, I had a choice to make, take the risk of paralyzing from surgery that could save my life and not paralyze me..or leave my Scoliosis to get worse and end up paralyzing me anyway? I chose surgery, although my dad originally thought it was for “vanity reasons,” however, he realized how bad it was when he saw the model Dr. Lenke had made of my spine before my surgery; his response was “That was in my daughter!!!?”
However the following December 2011, my original pre-op appointment, things were emotional again, but for a different reason. It had been a long day (12 hours to be exact) of MRIs, Xrays, CTs, getting poked with needles for bloodwork, doing a PFT(Pulmonary function test), and finally at 8 p.m., I saw Dr. Lenke. He was a bit more apprehensive this visit; My ribs were twisted around my spine and my lungs were pretty much being crushed by my spine and my lung capacity was 18-20%. He moved up my Halo Traction date to Jan. 5, 2012 and told me I could be in traction for almost up to a year and still possibly not have surgery. So Once again, I broke down crying. However, the next day, I had a visitation at Shriners Hospital St Louis- where I’d be spending time for my Halo Traction stay and the care coordinator for Dr. Lenke, Joetta Whorton, helped restore my hope. She was all, “We’ll get those numbers up, you’ll have that surgery. Don’t you worry!” By the time I left that meeting, I had cheered up about 50% because of her words and all the nice staff, and all the fun I was promised in the recreation dept. Sure I was still apprehensive, and scared, but I knew I didn’t have much choice if I wanted to try to fix my back. I was also excited because with recreation, we had to do weekly projects and I figured it’d be an opportunity to learn cooking and some other stuff I had been wanting to do, but due to being at college before, I hadn’t had time. Another wonderful person I met that was optimistic about “getting my numbers up” in pulmonary was respiratory therapist, Wendy, who even gave me an I.S. to practice with a month before I was due to start traction.
I left my hometown of Opelousas, Louisiana, bright and early January 4, 2012. I left my family and friends and had no idea when I’d be back and see them again (I even stopped to visit my bestie, Amber, before leaving because she had something for me; She was tearing up but trying not to cry and so was I, but as soon as I got into the car and opened her gift and read her card, the waterworks started). I don’t remember what time we finally reached the hotel (Haven House) after our flight, it was dark I know that and had to be up at 4:00 a.m. and be at St Louis Children’s hospital around 5:30 a.m. for the halo placement procedure, but of course, anxiety made falling asleep a challenge, but eventually, it happened, and I did not want to get up to dress in the morning, so I went to the hospital in my PJs; I’d have to put on a hospital gown anyway!
By 5:45 a.m., they did all the pre-halo surgery stuff- weight, height, peeing in a cup, taking my temp, having me change into the hospital gown, etc., etc.. At about 7:30 a.m., they took me to the back (operating room) and started prepping me—IVs, etc. By 8:10 a.m., I was out of the halo surgery and recovering well. I was able to drink some 7up and wasn’t nauseated at all, I just had a really bad, throbbing headache; Then again, if someone was drilling into your skull, you’d probably have a headache too! By 11 a.m., I was recovered and out of Children’s Hospital and made it to Shriner’s Hospital to begin my journey with traction. I did eat some lunch because I was starving, but I had gagging and nausea later on, but later that night, I was up and about socializing at “Great Lengths club” (A thing they have at Shriners for Lengthening devices- Halos, Taylor Frames, etc), eating pizza and socializing with some of the others there who had Dr. Lenke as a Dr. also.
Mom stayed with me until the following Sunday and then she had to go home; That was so hard for me because not only was I going to be alone in an unfamiliar place, I’d have to be “my own advocate” and tell the nurses what I need, but I also had some pain and nausea still from the Halo Placement and I had taken a Lortab for pain which made me sleepy, but I had to be in traction and couldn’t sleep all day long which made me irritable and emotional. For 7.5 Months, Mom traveled back and forth 3 weekends out of the month to stay and visit with me, and then after surgery, 2.5 months with me; God bless this woman I call my mother!
Despite being far away from friends and family in Louisiana, I made many memories and new friends in St Louis while experiencing this life journey. Sure, some nurses and I clashed heads; but most of them, I got along with. Some of my new friends include all the nurses/caretakers at the hospitals…Joetta Whorton, Naomi Thompson, Kathy Blanke, Donelle Sherman–the main four women on Dr. Lenke’s team that I spent a lot of time with, along with all the nurses/ recreational therapists/respiratory therapists(especially my “personal Hitler/drill sergeant,” Marcela Spraul, her respiratory team—Wendy, Stephanie (who no longer working there), Jodi, Terry, Ruby(no longer working there); Many of the nurses: Carol and Pauline (my first two nurses), Dottie, Pam, Lisa, there was a nurse Melissa, a nurse Valerie, a nurse Amy, Nurse Nancy(who was like my best friend RIP dear friend), Tina, Denise, Charity(my “sister” because we bicker so much), Rachelle(no longer working there), and many more! Kate(who’s job I don’t exactly remember the title of LOL- sorry Kate!) and Lisa who was with housekeeping but is now working at Barnes or Childrens of St Louis. Leighton who worked in Pharmacy: he liked to tease me about my LSU tigers and when I’d wear my LSU shirts, and he once brought me a whole Red velvet cake when I joked with hi about wanting it: it was the weekend and he was telling me bye-
L: Have a good weekend Jamie, is there anything you need for a great weekend?
Me: Well, It’d be a fantastic weekend if I’d get some red velvet cake
needless to say, that monday, he walked into my room with a whole red velvet cake and told me “This is just for you, you cannot share with anyone.” However, with the small stomach I have, I had to disobey his orders of not sharing. LOL
I also made friends with the Physical therapists-too many to name, but the main ones—Becky (Shriners), Patti (Shriners), Tim and Rachel (Children’s). All of the staff in Recreation department: Jen, Barb, Kerry, Laura, and the others that weren’t as frequent; they made Shriners stay more enjoyable, entertaining, and tolerable. All of the Xray team, but especially Melissa because we pick, fight, and bicker like sisters. Lol. All of the cafeteria workers but especially Sylvia, Andy, Marsha, Mrs. Ann (dietary specialist) who always went out of her way to get me snacks that the hospital normally didn’t carry. And of course, Dr. Weatherford the psychologist who was often my sounding board for all my emotions 🙂
As I said, lots of new friends and not even done, sadly due to all the meds and time that’s passed, I have forgotten some names of the ones I didn’t have as frequently and feel so guilty for that! 😦
I also made many of new friends in fellow patients: Sechaba Kershner, Blake Zaunbrecher, Nicole Rodman, Kamille (can’t remember her last name, sorry ‘Mille), Heather Langley, McKenzie Burke, McKenzie Miller, Jeanette Salinas, Elora Pasley, Ali McManus, Courtney Mashburn, and some other fellow patients and all their families. I also made special friends with my dentist back home’s brother and sister- in- law, Mr. Steve Chachere, and Mrs. Denise Chachere; they took great care of me when Mom wasn’t able to come up to St. Louis to be with me, they took me out on out passes, and just made me feel part of the family. A few other new friends I made were from the group Cabela’s that came to the hospital once a month to do crafts with the kids; Mr. Mike James(RIP), his wife Nancy, and Beverly-Barney-Duvall (and I later made friends with her husband, “Doobie”.) Mr. Mike and Mrs. Nancy came a few times to see me after my surgeries at Children’s Hospital too. Beverly and “Doobie” hosted me in April 2014, when I went to St Louis for a visit and not a medical appointment. They also hosted Mom and me in August 2014 for a medical appointment/ as well as a “reunion” at Shriners Hospital for their 90th anniversary/birthday thing. I love you all and I don’t know what I’d do without every one of you all in my life! ❤
During my long seven-and-a-half- month stay at Shriner’s Hospital of St Louis, there was some staff I clashed with, but for the most part, I got along with most of them. I would give each of them a personal shout out, but that would take a book in itself; so many wonderful staff and precious memories, so I will just name a few so you can get the idea of how awesome the hospital is.
One staff member that I loved to give a hard time was the respiratory therapist director, Marcela Spraul. She had a specific way she wanted my respiratory therapy done and I didn’t like her way; I found it more difficult and I was proud of my way because I got higher numbers. One day I told one of the respiratory therapists that worked under her, “Thank goodness, it’s not Marcela; she is like the Hitler of respiratory therapy!” Well, let’s just say word got back to Marcela of what I said; guess who was not only my wake up call but also my respiratory therapist for the rest of the week; Karma is so funny….not! *rolls eyes*
Marcela may have been tough, but she was fair and she also cared a lot for all of her patients. She would tell the parents, “When they are here, they are my children also.” She visited me like two or three times after my surgery at Children’s Hospital of St Louis, which was a different hospital than where she worked and almost a 15-minute drive away from each location. (My only regret is that I was too drugged up on pain medicine to know if I even interacted with my visitors after surgery.)
I loved to give a hard time to a nurse named Charity; she was like a big sister. She (Charity) always would greet me, “hey trouble,” to which I would reply, “why are you talking to yourself, Charity?” We loved to bicker; it was like having an older sister.
Another staff member that was a major influence on my journey, was my Care Coordinator, Joetta Whorton. Joetta loved to mess with me, but I would give it right back to her. I would sneak downstairs to Outpatient Clinic (where her office was), and sneak up behind her. She, like Charity, loved to give me the nickname “trouble;” Hey I accept it; I am trouble…..sometimes. Despite her calling me “Trouble,” I know she loved and cared for me because when I had my broviac central line procedure, she was going to stay with me since my mom wasn’t up there with me. To Joetta, You are an important asset to the hospital all the years you have been there. You’ve changed millions of children’s lives just by being a care coordinator; you are like a second momma to thousands of children. When you had retired for that short little time, I felt that the future Shriners’ patients were losing out on not knowing a terrifying (just kidding…terrific), warm-hearted, funny, fun, and caring woman; that you would be greatly missed by those at Shriners, and I was worried about miss seeing you in the clinic when I go by Shriners to visit. But, that wasn’t the case; I kind of had a hunch that you would go bat-s**t crazy in that house with nothing to do! LOL. I always hold the memories of Shriners in my heart. Especially sneaking off the second floor to go harass you in the clinic. I remember I had gone to lunch with Dr. Weatherford one time and Joetta had been looking upstairs for me. She comes in the lunchroom and said: “I’ve been looking all over for you, trouble.” To which I replied, “And I’ve been avoiding you!” LOL 🙂 That was during one of the first few weeks I was there.
As much as they gave me heck, tried to “push my buttons,” I gave it right back to them! Can’t keep this girl down; She is hell on wheels! HAHA! Now, years later, Shriners Hospital is no longer on Lindbergh where it was when I was there: They have moved locations and the move cost some their jobs, and a smaller facility. I am not happy about their location move, but if it helps more children and keeps up the mission that Shriners was founded on, then I can’t complain; Plus the new facility is nice looking, but it’s just not the “Shriners home” I had for 7.5 months and visiting my Shriners people who are still employed there, it makes me a little heartbroken because some of my people have left and I have no way of contact with them. (Cue the sad music and tears, LOL.)
Surgery and more: On August 16th, 2012, my life took a turn and changed forever. “Why?” You may ask; well that was the date of the first phase of my surgery and the beginning of a long journey. The surgery was a long 12 hours under anesthetic; there was a problem with the Broviac central line: one of the lines had been cut, days before, and the anesthesiologist was worried about the clamped/cut port, so they had to remove it and put in a pic line before starting the surgery. The first two and a half weeks post-Op were difficult; I pulled out my breathing tube, got a bad respiratory infection, got pneumonia, and ended up having to have a trachea inserted; which was still inserted when I returned home on October 15th, 2012 and was removed on February 21st, 2013. The second phase of surgery was commenced on September 20th, 2012. This surgery was shorter and I was only under anesthetic for six hours. Fewer troubles for this surgery (PRAISE GOD!)
Despite the pains and struggles, I had to get up out of the hospital bed and do therapy. No matter if I was crying and hurting; I had to do my therapy, walking with the walker, and using a ther-a-band to build up leg/foot and arm muscles. Some people might say: “How heartless are those people?!”; “That girl was in pain!” but my mind thanks them. That pushing has been the fiber of my being throughout my entire life; it is what has made me become the successful, independent person I am. Without that pushing, I might not have graduated high school or gone to college or even had the urge to do this surgery.
During the recovery time after my surgery in 2012, I had a lot of issues: I had pneumonia right after the first surgery and ended having to get a trache, I pulled out my breathing tube, I had a terrifying nightmare while I was sedated for 2 weeks straight(Due to pneumonia,trache, etc), I had a seizure due to a mucus plug, They thought I had C-Diff (a type of infection), and then after the second surgery I had developed a pressure sore. You probably read all that and think, “Damn, this chick has been through hell and back,” but there are other memories that I’d like to go more in-depth with at this time.
During my time in the hospital between surgeries, I had very odd dreams probably due to the heavy narcotics I was on.
The scariest dream was after my first surgery, mom says some parts of it are probably things I overheard during those first two weeks; it’s a dark living room setting, nurses and student nurses are surrounding me. I was strapped to a recliner and it’s in the bent back position. A funnel is in my mouth and I’m being force-fed narcotics after narcotics. When Mom comes into the room, the nurses lie to her saying “she has become addicted to the drugs, that’s why she is crying and shaking; we are detoxing her,” but as soon as she’d leave the room, they’d turn back to forcing more meds into my system. The last thing I remember from that is watching the monitor beeping and thinking in my head “I’m dying.” Parts of this dream are true, from what mom tells me; the part where I looked at the monitor and said: “I’m dying, “apparently I had done that in real-time too; turns out the nurses had unplugged my pulsox machine and my o2 (oxygen) had a huge question mark on the monitor. Another true part of the dream was when they said I was detoxing, mom claims she said my actions were that of someone who was detoxing, and she said I probably overheard that while I was still in “dream mode.”
I also had trouble with distinguishing dreams from real life; poor mom never knew what to expect to come out of my mouth when she came to my bedside: From Dr. Lenke is a spider, but a good spider, to “I saved Atlantis from drowning;” TV and good drugs just don’t mix, or they do, depending on how you look at it. Some happier dreams I remember having while in the hospital included: Me helping save Atlantis from drowning under the sea, I helped Puss in Boots and Humpty Dumpty, and I even dreamed that Dr. Lenke, my orthopedic surgeon, was a spider, but he was a good spider; not a bad spider that bites people or lays eggs in people’s brains when they are sleeping … Hey! Maybe that’s how I helped Humpty Dumpty, maybe I took him to see Dr. Lenke the spider to put him back together again; I guess the world will never know, what “Spidey” powers Dr. Lenke could have! HAHA!
Another memory that mom loves to laugh about was the “I want to lay in the bed like a normal person,” meltdown. I had PT twice a day, but due to all the equipment, one day, they had to move my bed, to get me out of my room. When we’d return, they’d put me back in bed, make sure my body was aligned and straight, asking “are you straight?” Well, I was high on pain meds, so the only way I could tell was by looking at the ceiling, and if the tiles were straight, then I was straight, but due to my bed being crooked that day, the tiles were crooked despite my body being straight. I told them “no,” so they kept trying to adjust me, and asked me again and again, “are you straight now?” By the third time, I’m getting frustrated and emotional, I snapped. “I JUST WANNA LAY IN THE BED LIKE A NORMAL PERSON!” Tears streaming down my face, and I’m starting to hyperventilate. Mom tries to calm me down, “Jamie, we are working on it, calm down…it’s okay.” She notices that I’m looking up at the ceiling and once again she laughs as she tells PT why I am not straight.
Another memory was closer to discharge time when I had that pressure sore. Dr. Lenke would come in at the early hours of the morning to do his rounds. He’d come in, roll me onto my side to look at the pressure sore, then take notes, then leave. One morning he was running late, rushed in, and practically flipped me by grabbing the sheet to roll me, quick. When he walked out, I told mom, “I feel like a fish or a hamburger, he just flipped me!” She just laughed cause I was so funny on my pain meds; no filter, but that’s me in real life too! HAHA!
During the hospital stay, something was going on in the park across the street called the “Forest Park Balloon glow,” and we had a perfect spot to see it: 10th floor of children’s hospital of St Louis; Too bad I was “high as a kite,” on pain meds and had no interest in it, but mom enjoyed it (Finally something Mom could enjoy for herself and not be “all about Jamie” LOL). We had some friends that we made while in St Louis, who came and brought food to watch with us, the nurses had turned my bed to the window and even raised me almost as high as the ceiling to watch it; but no, I had to be passed out sleeping from pain meds! At least, Mom got something enjoyable out of my hospital stay, the poor woman some days looked like she hadn’t slept a wink! I even told her one day, “Mom I feel sorry for you,” she was like “why?”, and I said while touching her face, “you got bags under your eyes, you look tired!” What can I say, I love my momma.
Also in St Louis Children’s’ hospital, I didn’t have much appetite but they wanted me to eat, so one of the nurses or rec people knew the chef, and asked him to come up and ask me if I was hungry for anything specific that wasn’t on the menu. The joke was he was my “personal chef,” his name was Chef Rob and he went out of his way to help me eat even when I normally wasn’t hungry. He made attempts at Louisiana cajun food and it was pretty good for being out state, had the right amount of seasonings, however, his “rice and gravy” was very skimpy on the gravy, and his “gumbo” was about how we do our “rice and gravies” back home; however, his fried okra was amazingly good. He also made me lobster stuffed mushrooms, YUM! He always went out of his way to make me feel happy and want to eat. Thanks, Chef Rob!
Another funny memory was with Tim, the Physical therapist. We did my walking but also went walk downstairs near the gift shop for some “retail therapy,” as mom calls it. Near the gift shop, there is a fish tank, and let’s just say pain meds and a girl with no filter, watching fish in the fish tank chasing each other, not a good idea for a children’s hospital publicly:
J: that fish is chasing the other one. I bet he’s a female and he’s trying to rape the female.
Tim: Jamie! this is a children’s hospital
J: Oops! Sorry, Timmy!
We get back to my room, and I had this gel pillow thing for my pressure sore.
Tim: Looks kinda like a breast implant doesn’t it?
J: You just fussed me for talking about sex and rape, and you over here talking about breast implants? What the heck, Tim!
Tim: the difference is we are not out in the public where the whole hospital full of children can hear. Just you, me, and your mom
we all laughed. 🙂
Once back home, I still had some pain, but each day I was getting stronger. Even back home, I still have to do my therapy, as well as be careful with how I turn; I can’t twist or turn at certain angles, along with other restrictions. When winter came, the weather changed, and my post-surgery pains got a little worse than I can handle without pain meds … let’s just say, ”Mr. Valium” and I had become pretty good friends.
That long journey that consisted of nine months in St. Louis has given me a lot: It taught me patience, it has given me many new friends to go back and visit with, it has given me a new back and a new body(until I broke those rods and had to have a revision surgery August 2019)–which gives me a good excuse for a whole new look! (Any excuse to shop is good HAHA!) :)
It was on a trip to New Orleans Children’s Hospital for an orthopedic doctor appointment we were stopped by state police for speeding. Never before in dad’s life has he ever gotten off with just a warning. The officer was a Shriner. He gave his business card to my parents and told them about the wonderful work of the Shrine Club, which is free to families. After a few more visits to New Orleans doctor, they decided to get a 2nd opinion. My parents wanted a 2nd opinion because the private physician kept changing his mind about when surgery should be performed. I was starting to pull up. He bounced back & forth as to waiting until after I started to walk or before. They didn’t feel he was confident about what would be best for me. Mom called the local Shrine club; 2 very nice gentlemen came out the following day with paperwork and took pictures of me. Shortly thereafter I became a Shriners Hospital for Children-Shreveport patient. Shrine doctor decided it would be better before I started walking. Why wait? It had to be done anyway. Mom and I went to Shriner’s Hospital in Shreveport, LA a few days before surgery. Surgery was done at Christus Shumpert. I had to stay on my back in ICU for a few days. My parents had a room in the hospital with the freedom to come into ICU anytime to see me. The 1st night after surgery, I rolled onto my stomach and got up in crawl position just as mom walked into the room to check on me. I was being monitored in the nurse station. My nurse came running into the room to put me on my back; Even back then, I was such a little rascal and terrifying the nurses! LOL. After a brief time in the hospital, I was discharged with a cast around the torso area. The cast had a hole in the stomach area around the belly button. I complained about itching inside the cast. Dad would vacuum inside the cast using the long nozzle.
Shreveport is about a 3-hour drive from my home. I remember those trips to Shriners Dr. appointments so well because they were so memorable. During these trips, we had a tradition of going to the mall down the road afterward for Lunch at Piccadilly and then shopping; I especially loved going near Christmas time or Valentine, because I could get holiday shopping done.
Since it was a 3-hour drive, we often left my house extremely early; sometimes when I was much smaller: I’d pack a bag the night before and my parents would just load me up while I was still asleep in the morning. I was so small, I could slink down out of sight and change in the backseat of the vehicle. We’d often stop at McDonald’s to get breakfast; which mom and I often split the “Big Breakfast” and if there was time, she’d let me play in the playground for a tiny bit. Upon getting to Shriners Hospital, Mom and I would go sign in, and then I’d run off to go play in the waiting area and, of course, make new friends with other children. As I got into the preteen years, I no longer wanted to play with the pretend kitchen set, and would watch the movie they had on or go on the computer to get on Myspace or whatever; sometimes while waiting, I’d go to the cafeteria area and get popcorn or a cookie or a soda.
Once they called me to the back, we’d go straight to “weighing” and then to X-ray. I remember when I’d get weighed, they would often tease/joke with me because I hadn’t gained much in 6 months and they’d jokingly ask “does your mother feed you?!” To which I would laugh and say “yes, I eat like a horse; it just doesn’t stick to these boney hips!” (I also had really bad stomach problems so everything would pretty much go right through me.) In X-ray, I knew the routine of how they wanted me to stand: Back facing them, arms wrapped around something a metal box thing, feet slightly apart. I always got stickers and a stuffed animal/toy if I behaved in X-ray right away, instead of sometimes being mischievous and acting like I didn’t know the routine. After X-ray, it was to go bring my X-rays to the nurse/doctor meeting lounge area and then go sit up front and wait to be called back to be put in a clinic exam room to see my Dr.; Dr. Richard McCall.
Upon getting placed in a room, there wasn’t much to do in the room and sometimes he would take forever, so I’d go in the hallway and peek into the nurse/doctor lounge and giggle, spying on them while they looked at patients’ x rays, playing peek-a-boo: hiding when they’d look my way; Sometimes, I got caught by the nurses/doctors eyesight, but half the time, they’d just play along. I could always tell which X-ray was mine and I would sometimes go right up behind Dr. McCall while he was looking mine over and I’d point out “that’s mine!” and would trace the curve outline with my finger: He was so patient with me and my fascination; he’d sometimes sit me on his computer chair, and show me where the Scoliosis started and his ideas for future surgery “Once you go through puberty, “ yadda yadda yadda, a plan that never went to full fruition during my Shreveport checkups because my body had waited so long to “go through puberty” and the risk of paralyzing me was too great according to him when they discharged me at 17.5 years of age.
I remember one time, I think it was coming back from a checkup appointment, I for some reason stuck my head under mom’s driver seat of our Ford truck; she had to pull over because I got my head stuck. Why was I such an odd child?
I had to wear a body brace due to my Scoliosis. For those who do not know, bracing is sometimes a treatment for Scoliosis patients. I had to wear my brace from 2 years of age, until 8 years of age, when the doctors decided the bracing wasn’t helping; it might’ve been because I’d “pull a Houdini” and escape out of it. I despised that brace: it was hot, itchy, and so uncomfortable; when I’d take it off, I would scratch my itchy body for like 15 minutes straight. The undershirts for the brace, that were supposed to help, didn’t help that much. The only reason I liked my brace was that I had protection if someone hit me in the stomach area and because I had a place to put all my stickers. The worst part of the brace beside the itchy hotness of it was being molded for a new one. Being molded for a new brace was the worst because they use plaster of Paris or something like that to make them, and when they mold your spine, it gets hot and burns: I only remember being molded for a new one, once; I cried and screamed, throwing a tantrum, saying I hated them, until afterward when I got a toy to cheer me up; I named the doll “Cynthia,” because I was obsessed with Rugrats at the time, and it looked like Angelica’s Cynthia doll.
It didn’t do much good for me, so I was able to discontinue the brace after age 8. I had lots of memories of my brace.
There was a “game” I liked to play with my mom. I called it “Suitcase game” where mom would hold me by the straps of my brace and swing me in the air like I was a suitcase. How anyone never called child protective services, I will never know. Another memory was one of my mom’s favorite memories of me in my brace. They had Velcro straps on the back of it and Mom thought it was out of my reach. This memory shows another factor in my determination. We happened to be going somewhere and I was asleep in my car seat. Mom says I sat up in my car seat, eyes still closed. She says I reached behind myself, undid the Velcro straps, then proceeded to stick my arms into the brace, and push it away from my body; Escaping out of it. She says, before that happened, she would not know how I’d escape out of it because I would be put to bed in it, and when she’d come in the next morning to wake me up, I was out of it. Now she knew; somehow she always discovered any of my secret tricks! I eventually always got busted! HAHA!
I didn’t like my brace because when it was very hot outside, I would sweat and it’d start to itch, but other than that it didn’t bug me that much, except after eating because I always had stomach aches after eating. I did however like it whenever my body would get put in dangerous situations: my brace would’ve protect me: When I fell and knocked out my front teeth, I didn’t hurt my back because I was in my brace; When I had a girl that thought I was a baby doll and would carry me around, she dropped me one day, the only thing that got hurt, was my butt because my back was protected by my brace. Even though I hated it as a child if I had it on maybe I wouldn’t be so achy all the time now. I don’t know, just kind of wish I didn’t have the aches I am having now—Old Age Sucks!