peeks into my life dealing with everyday life and obstacles as well as obstacles of dealing with disabilities and accessibility obstacles, Chronic Pain due to broken spinal rods, living on pain medications, dealing with anxiety/depression, experiencing the newness of love, and fighting for my right to live and love my life in an ableist society.
I have always had a habit of biting my fingernails ever since I was a small child, and when it came to scabs I would also pick my scabs (a lovely habit I picked up from my dad), but as of late (the last few years) I started pulling skin that cracks and peels around my fingernails, my fingernails when they crack/chip, and as of late I had a scab on my forehead that I picked at to the point that it is becoming a deep open wound. I had to put Bacitracin on it to keep it from getting infected, but when I am “bored” or my anxiety acts up or just my OCD saying “hey you have a wound on your head, pick at it,” there goes my fingers starting to pull at it again. I really wish I could stop this. I need psychiatric help. The only thing that helps distract me is my wonderful dog, Beignet.
It’s officially December and I am not in the Christmas spirit like usual. Usually, I would be going all out with decorations and such, but not this year- maybe lights and that’s it. Due to moving in Jan. We don’t want to have to haul extra stuff than what is needed. Plus, it will be the first Christmas without Mommie, Mr. Mike James, my cousin Racheal Mary Meche, Ms. Nancy Moticka
It has been too much death in one year; not to mention all the other I care about who isn’t around anymore either- My other grandmother (maw), and then one of the most influential women in my life, Mrs. Evelyn Zehner, “Mrs. Z” from Camp we can do. It’s just so hard… I know there are worse people off, but for some reason I just cannot get into the spirit yet this year. Is it because of not decorating much this year, the financial stresses and having to ask mom to loan money for us to buy Christmas gifts until David can find a job? I don’t know. Just tired of always being miserable. I can’t remember the last time I was sincerely happy for more than a few hours.
😥 I don’t know, I just been depressed all day today. Hopefully, I can get out of this funk. Prayers appreciated. I hate it when I get depression.
Warning: I am about to be really emotional and sappy. Mrs. Z, The director of Camp We Can Do until 2010, has been on my mind a lot lately. RIP. I miss her so much and she was a major influence in my life…
Imagine: Being an 11 year old girl with severe physical limitations due to Severe Kyphosis/Scoliosis and Ehlers Danlos Syndrome. Imagine feelings like you don’t fit in anywhere and that even though you have friends, you constantly question whether your existence is just a burden on your loved ones.
Imagine: Starting a new scary adventure; a summer camp, Something I had never done before aside from daily VBS for a week at Church. Even though, I knew that it was for Special Needs individuals like me, I still was stressing. I remember going shopping with mom for summer clothes; constantly coming out of the dressing room in each article of clothing, asking the same repetitive question “Does this hide my curve? Does my stomach in this? Do I look ‘Normal,” and God forbid if something I liked didn’t look good; Talk about “Dressing room Meltdown!” of locking myself in the dressing room, beating myself up by hitting myself in the face, on the arms, crying my eyes out because I just wanted to be “normal.” The first day of Camp finally arrived and I was so nervous and scared, I didn’t socialize with anyone, I kept to myself, and didn’t want to participate in any of the activities except kitchen and arts and crafts. When the camp group activity (where the whole camp got together to participate), Mrs. Z Noticed I was not participating and when she tried to get me to participate, I cried like a little baby brat about “I don’t wanna,” and “What if they laugh at me?” It’s like come on, they have special needs too. Why was I so self-absorbed? So ignorant? I am so embarrassed was back then. Mrs. Z let me skip that first day group activity, but we had a “come to ” talk where she explained that I would eventually have to participate and try to make friends, that no one would make fun of me and if they did, they would deal with her. Thanks to her and camp we can do, I came so much out of my shell (at least there) and did things, I never would’ve done anywhere. I did the talent shows, the girl makeovers; I made wonderful friendships, and even volunteered as a counselor after I turned 18. Had I not met Mrs. Z who pushed me to realize I was not limited by my disability, that I just had to find an alternate route and the statement/Motto of Camp We can do, “Yes We Can!” Had I not met Mrs. Z and the wonderful staff who were encouraging and supportive of the campers, I don’t know how I would’ve turned out. Yes, my mom always encouraged me, but I always figured “She’s my mom. She has to say that.” Coming from others, it’s a confidence builder? I 100% confident and in who I am? No. I still have some work to do, but without Camp We Can Do, (and Shriners in St Louis later on), I don’t know what my life would’ve been? I don’t think I would’ve flourished the way I have since starting Camp We Can Do and meeting Mrs. Z. She pushed me out of my comfort zones to explore other aspects life. I wish she was still around to witness my life and accomplishments, but I know she is watching over me, and hopefully I am making her proud. God bless you Mrs. Z, (and I am tearing up writing this), I miss you so much! There is so much I wish I could just talk with you about. I love you and hopefully, I can make you so proud of me. ❤ ❤
There once was a lady who was sweet and kind, She worked at Camp We Can Do, For quite some time. Her name was Evelyn Zehner,But to the campers at Camp we can do, Her name was “Mrs. Z” And she was loved by every camper, Including me. She never saw a handicap or Disability, She only saw children, who wanted to have fun, But could also be held accountable for every misdeed. She treated us all “normal”, Never made excuses for us.But loved us so much, that was evident. We were all her babies, Like a parent, Even when we were misbehaving, she still loved us. Every Morning we were given “good morning hugs,” Right as we got in the door, running into her open arms,We loved our “Mrs. Z,” Sometimes, we’d get in trouble just to go sit in the office with her; Or others, like me,Would just sneak away from group and peek into her office, Until she would catch me, I can still hear her saying,“Okay Jamie, I need you to go back with your group.”It was said so often, it should’ve been stamped on my forehead. The days always ended the same,As children’s rides would arrive, the kids would hug Mrs. Z tightly, She’d squeeze them with lots of love, And tell them “Rest well for more fun tomorrow.” Or “Have a good weekend,” Whatever the case would be. She knew what the kids were capable of, What they knew, how they knew how to play “sympathy card,” She was tough, but she was loving; Firm but Fair. She was big on teaching life skills. She knew these kids, That others counted out,Could learn these life skills, And prove something to the world;That they could be something with the right dedication and discipline. Sure some times, her methods seemed extreme and harsh, Maybe “too hard,” on kids who already “had such a tough life,”But I cannot recount a single kid who ever held a grudge;They always would hug her, and still knew her love for them. We learned how to cook in the kitchen, There would be people who came in to read stories to us, People who came to teach us healthy eating, nutrition, hand-washing, etc.We’d go to library, museums, They would teach us how to do grocery shopping,She knew that special needs couldn’t always learn just from textbook and memorization, We also had to go out and experience it, And of course, try and fail over and over till we got it. But she never gave up on us; she never counted us out, Ever! Sure, she is gone, And we are all sad, But her legacy will live on, In the memories and love,The impact she had, On thousands of lives. Fly High, Mrs. Z, You took care of everyone here on Earth,Now it’s your turn to enjoy some pampering,Up in heaven; you have definitely earned your angel wings, Sweet woman. Long Live, The advocate, the disciplinarian, and second mama, To everyone, especially children and parents from Camp We Can Do.
It was in 2008, when we went to Kemah boardwalk for the Camp’s big field trip. I wasn’t riding any of the rides; just watching all the other campers having fun. Mrs. Evelyn ZehnerEvelyn P. Zehner was the one who told me “your parents didn’t pay all the money for the big field trip just for you to be a spectator.” So She encouraged me to try a ride. I got on a tower drop (not realizing that I was terrified of heights), and I never been so terrified in my life, but I also am glad I did it. (isn’t it funny how something can scare you, but you are proud of accomplishing it anyway) Mrs. Z was always encouraging us to step outside of our comfort zones, and really thats what should be encouraged, because if we don’t, then how will we ever find out what we like or are good at …if we are counting ourselves out before trying, or scared to fail, then what kind of life is that? Mrs. Z had that tough love, but sometimes, that is the formula for success…not always the case, but sometimes. I think the lessons she taught us, and what many influential people in my life taught me, has influenced me into the person I am today. Yes, I still have some “kinks” to work out and smooth out, but for the most part, I am proud of who I am and I have Mrs. Z as one person to thank for that.
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.
so the latest on my back: I saw dr. Kelly today. He is very optimistic. His plan is if my rods aren’t infected (we did labs), he says he will just open the incision scar where my rods are broken at, clean up my wound, and add in some “dominoes” and add in some extender rods.” It will be “Simple and sweet,” as he put it.
:p The date is the same, August 14, but I need to be here by the 12th because I need to go to get my central line valve put in on the 13th. If he does what he wants, “simple and sweet,” he doesn’t think I will have as many complications like I did last time bc last time I had broken ribs and pneumonia from that which led to trach, blah blah blah…the framework already there, this is just some maintenance repair! LMAO. But whatever God’s will, will be done.
I woke up with a minor migraine, but no level 10 pain today in my back- could’ve been that I knew Mom was bringing my sweet Beignet (my mixed-breed rescue dog) for a visit; ever since finding out about my broken rods, she’s been living with Mom due to my not being able to hold her leash for walks. Mom dropped her off around 10:30 a.m. (Mom went to Mass).
Mom came back from Mass at about Noon and asked what David and I were doing for lunch. I said, “we have leftovers, but it didn’t sit well on my stomach.” Mom asked “what do you want to do,” to which I replied, “I know I always say it’s blasphemy to have Deano’s pizza without Dad, but…” Mom laughed and replied, “but you want it?” To which I nodded my head. She got a giant 3-type pizza like we normally do and it was delicious! She then left to go get things from my Uncle and Aunt’s house and was going to come back afterward to pick Beignet up to go home (She came back at around 4ish.)
I got to spend about half the day with my sweet Beignet 🙂 We snuggled, practiced some commands, played with her toys, all 3 of us took a walk (David, Beignet, and I- David held the leash). Was a great visit with her, and I was ready to see her off at 4ish because I wanted a nap (didn’t want her to leave, but I knew she was gonna leave anyway- so I wanted to treasure the time I had with her).
While Beignet was here, I had very minimal pain, but it must’ve been a distraction or something because a half hour after she left, I had to take my pain medication because it hurt really bad again. *Sigh*
At least half of my day was good and sunshiny, that is better than nothing at all 🙂
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.
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.