The past few days have been rough. My back went out again, so my upper back and neck have been causing extreme pain again. I think the gluten free diet isn’t really helping much, as all the things I thought it was helping have suddenly flared up the last couple weeks. My GERD has been awful to the point I’ve had trouble swallowing again, the night sweats are back, and I seem to be having a widespread inflammation flare-up again.
I know I shouldn’t have put so much hope on the diet to solve all these issues, but I feel like I’m so desperate for something to make me better that I often put high expectations on each new treatment idea, hoping it will be “the one”. Of course, I probably need to accept that since I have Ehlers Danlos (a genetic connective tissue disorder), that nothing is probably going to be that cure-all I have been hoping to find.
How I wish that there was a cure to whatever is going on inside me. I often long for one of those scanners like they have on Star Trek that could easily pinpoint exactly what is going on and what the treatment should be without being invasive. I guess I was born too early for that. We might be headed that way technologically, but it is probably well off on the horizon.
For years now, I have considered writing a book about my teen years, when I got swept up in a fundamentalist, almost cult-like religious environment for several years. Boy, was I a mixed up kid back then! I’m using my actual diary entries from that time to illustrate what I went through psychologically trying to be this perfect “Christian” that the church I was going to at the time said I had to be. Here is a sneak peak at the introduction to the book:
“This book is one I’ve thought about writing for a while now and finally decided to just do it. As the title suggests, this is indeed one of my own diaries from when I was a teenager and was being influenced by a fundamentalist Christian mentality that sought to isolate me from everyone around me, put fear and anxiety into my heart concerning every choice I had to make, and weighed down my conscience with constant guilt over every little real or imagined transgression.
I am using the first journal I happen to have, started when I was 14 and about to enter high school. The journal covers the time I was most influenced by fundamentalist, almost cult-like ideas.
This religion told me it was wrong to wear pants as a woman. They told me it was wrong to cut my hair or wear jewelry and makeup. They told me it was wrong to listen to secular music, go to the movies, or watch tv. The internet was evil as well. They told me it was wrong to have friends that weren’t “holy” believers. They tried to make me feel like women were simply made to be complements to men, not to have dreams, goals, or lives of their own.
This religion had me constantly fearing the presence and “possession” of demons and thinking that my future didn’t matter because Jesus was coming back soon anyway, so I wouldn’t live long enough to have much of an earthly life. They even discouraged use of “man-made” medicine because it supposedly showed a lack of faith in God’s healing powers.
I have lightly edited the journal entries to make them easier to read, but have otherwise left the content as is. I have inserted italic comments in parentheses when I felt I needed to clarify something. I did leave out parts I felt were uninteresting or just don’t matter overall. I hope you enjoy reading it and can see how fundamentalist religious environments can be extremely damaging to children and teens.”
This hasn’t been a great week for me. I’ve been struggling with headaches, earaches, fatigue, and stomach issues physically, and then on top of that I’ve been rather depressed and lethargic. Last weekend we were supposed to go to a baby animals festival I always love, but I didn’t feel up to it either day. Tomorrow is my 16th wedding anniversary, but I don’t feel much like celebrating, even though I am very thankful for my wonderful husband.
We also found out that my husband’s health insurance through his work is going up $100 a month and that I might actually be dropped from the plan now that I have SSDI and can get Medicare. I’m not sure how that might affect my current healthcare and doctors. I really hate our healthcare system here in America.
I guess a couple of good things I can concentrate on are that I just hit over 2,000 Instagram followers, and am only 5 subscribers away from 1,000 followers here on WordPress! If you don’t follow me already, please help me reach that goal!!! I would be most grateful and it would make me smile.
Mother’s Day always creates such a barrage of mixed emotions for me. There was a lot of trauma, abuse, mental illness, and foolish decisions that marked my childhood. My mother was far from a perfect parent. Luckily, she does admit to that and seems to be really trying to be a better person now, but being around her always triggers so many memories, thoughts, and feelings – some good, some bad, some funny, and some tragic.
I think part of the issue is that my brain has a tough time seeing how she acts towards me now and reconciling it with memories of how my sister and I were treated while growing up. I do believe in forgiveness (within reason), and I do love my mother, but I doubt there will ever be a day in her company that doesn’t create confusion for me internally.
I write this post today to recognize those of us who struggle on Mother’s Day to even know how to feel…
It is strange how negative words can stay with us for a lifetime and hurt long after they are spoken. Today, I was reminded of a conversation I had way back in middle school. My friends and I were having a conversation about birth order statistics and how the oldest is often the smartest and most responsible in the family – which apparently was the case in all their families.
I mentioned how that hadn’t really happened in my family as I was the youngest and yet I was the one in the gifted program, the one who got straight A’s, and the one who was least likely to break the rules. My sister was very smart in her own ways, but not overly academic or intellectual.
One of my friends (or more likely a frenemy) replied, “Well, maybe your sister is the pretty one then.”
Before I could digest this insult or respond, one of my other friends chimed in assuring the group that my sister was no looker either, which made everyone laugh. I didn’t let on that I felt anything, but inside I was crushed. I felt ugly and I also felt bad that my friends had insulted and made fun of my sister.
To this day, remembering this conversation makes me feel ugly, plain, and rejected. I wish my friends had been more careful with their words.
I meant to share this poem around Easter, but forgot. Guess I had too much going on. This poem just sort of wrote itself, with the images of both the commercial and sacred aspects of the holiday mixing together in my mind. It is not meant to be offensive to religion, but instead, to compare and contrast the cheerful, innocent brightness of welcoming spring with the actual gruesome reality of a crucifixion and resurrection:
poor Jewish carpenter
whipped, beaten, and scrambled
Today my husband and I went to go see one of his students dance in a special recital:
Seeing all the cute little kids dressed up in their costumes and dancing made me really miss having kids around. I used to be almost constantly surrounded by kids between foster parenting, volunteering with the kids at our old church, and working in the school system as a teacher’s assistant/aide. My favorite age of kids to work with were always the younger ones, 3-4 years old to around 6 or 7, although I bonded well with kids of almost any age.
At this point, I don’t know if my physical/mental health will ever consistently improve to the point that I can do those things again, but I miss them. I am thankful for the experiences and memories though.
Had my EEG yesterday morning. It wasn’t too bad. The flashing strobe light part was almost kind of like what I imagine doing psychedelic drugs would be like – all the swirling lights and patterns…it was kind of crazy. I was supposed to nap for like 15 minutes or so, but just couldn’t fall asleep. I’m hoping I won’t have to do the home sleep study, but I guess we’ll see what the doctor thinks. The gel they put on my hair to keep the electrodes connected drove me crazy, so I had to come right home and wash it out.
Other than that, not much exciting is going on. I am attempting to embrace a mostly gluten-free diet in hopes that it helps my digestive and chronic inflammatory issues, but it is hard because many of my favorite foods (pasta, pizza, bread, cereal, cookies, etc.) have to be eliminated or replaced with gluten-free substitutes which don’t always taste as good or have the same texture. As an autistic gal, food texture matters A LOT to me and it takes a good long while for me to get used to changes. Thank goodness a few mainstream cereals are already gluten free (like Cheerios, Lucky Charms, most Chex varieties, Fruity/Cocoa Pebbles, and a few more).
My mood today is rather blah. Just not feeling much of anything, except tired.
Here is what I wrote on my Facebook page today, I think it pretty much sums it all up:
Six long years, and I finally won my SSDI case! Fully favorable! Feel like crying and screaming. Been sick and in pain so long, sometimes I wanted to give up hope and die, but glad I hung in there.
All those people who doubted me or thought I was just being “lazy” or “dramatic” can kiss my ass. To all those who have showed love, empathy, and encouragement, thank you so much for helping to keep me alive and fighting.
My fellow bloggers here on WordPress definitely fall into the second category of supportive, encouraging people, so thank you all so much!!!
By the way, the decision was just made yesterday and my lawyer was the one who called and told me, so it will still be a little while before I get the back pay or monthly payments started, but I’m on my way!