Tag Archives: disabilities

Back Doctor and Pain Management Clinic Rant – Why So Insensitive?

Posted in Asperger's & Autism, Mental & Physical Health, Personal by

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This is going to be a bit of a rant. Yesterday I received a letter from the orthopedic doctor and pain management clinic I was seeing for my upper back/neck pain. That letter turned my mood sour quickly. It said that I had been non-compliant with physical therapy and the spinal injections they had ordered, so they were kicking me out of the practice.

Why did it tick me off? Because the way they expressed it is totally not what we had discussed in person. First of all, I was not “non-compliant” with physical therapy. I tried it for several weeks and it WORSENED the pain rather than helping. It also caused widespread fibromyalgia and chronic fatigue syndrome flares throughout my body. This wasn’t the first time I had tried physical therapy, so I had been worried from the start, but they had promised they would accommodate my conditions, which they didn’t actually seem to do.

When I called the physical therapy office to explain that it was worsening my back pain and my fibromyalgia/cfs symptoms, they seemed understanding at the time. I was also having issues driving myself to therapy because when my back pain flares up, I can barely turn my head because of the neck pain. I asked the physical therapy office if I should perhaps try again in the summer when my husband could drive me, but the lady said that if the sessions were causing me that many problems, trying it again in the summer didn’t make much sense.

As for the spinal shots, the main reason I was fearful about going through with them is because they would not offer any kind of sedation. You see, I had been told how important it is for spinal injections that you be absolutely still during the process or you could cause damage to the spine. As an autistic person with severe sensory issues and intense over-sensitivity to any kind of sensory input (including pain), this worried me. I also have severe anxiety and that can sometimes make me shake and tremble involuntarily.

I had researched the shots and noticed that many other places offer sedation. I even talked to a few other people who had undergone the shots and had been sedated. I was not trying to be a pain or a drama queen, I was simply being cautious. Affording the shots was also a major issue at the time (since they required full payment up front), which I had explained to them.

In the end, I’m not upset that they were unable to further help me, I had already kind of figured that out. However, I am upset at the accusatory tone of the letter they sent me and the obvious insensitivity and lack of understanding for people who suffer from chronic pain/chronic illness and people who happen to have autism or other sensory processing difficulties. By the way, I will be sending them a letter back stating much of what I just said here. Hopefully they will learn something.

 

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Anger, Mania, and Standing Up for Myself

Posted in Asperger's & Autism, Mental & Physical Health, Personal by

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Last night I had a definite episode of mania. Wanting to stay up all night again, feeling like doing a million things at once, wanting to jump out of my skin, tempted to spend way more money than I should, barely able to sleep. If you read my rant yesterday, then you know that I was already dealing with a lot of anger, so I can’t help but wonder if anger can bring on a manic episode? I honestly don’t know whether that is possible or not, I should probably ask my psychiatrist, but it does seem interesting that after being upset and angry I became so manic.

Something else happened last night that made me even angrier than I had been when I wrote the rant post yesterday. Someone else in that Facebook group commented on the post I had written that only 1 or 2 of my mental or physical conditions could be disabling. They said that the Asperger’s and Bipolar might be disabling, but the PTSD, Social Anxiety Disorder, Fibromyalgia, CFS, Plantar Fasciitis, IBS, chronic infections, Degenerative Disc Disease, and bulging discs are NOT disabling. That really set me off.

At first I just told the girl that she should research the conditions and learn more about them if she thought that. However, she went on to say that I was the one who was ignorant and that I would probably “argue with a brick wall”. That really made me mad. I even asked her why she was being such a bitch because I hadn’t done anything to her. For me, saying something like that is EXTREMELY CONFRONTATIVE, but I also felt so proud of myself for standing up for myself for once in my life. Standing up for myself has always been a real challenge for me, so much so, that many people have told me over the course of my life that I needed to stop being a doormat and quit letting people walk all over me.

In person, I would still likely have a really hard time standing up for myself, mostly because when things become confrontative or stressful, I tend to struggle with selective mutism, which is a common thing for people with autism to deal with. Throughout my life, whenever I was bullied or abused, I almost always found myself temporarily struck dumb, unable to formulate a response or rebuttal. It generally only happens when I feel threatened in some way, but it is very frustrating. I figure standing up for myself online is at least a start though!

A Few Words About Applying for Government Disability Benefits

Posted in Mental & Physical Health, My Writing & Books, Personal by

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(The below was written out of simple outrage from what I have seen happen to fellow human beings who are genuinely too sick and weak to work, but are expected to wait years for any help from the government programs they have paid into all their lives. I am fortunate to have other resources to survive on while unable to work, but not everyone is so lucky. Many homeless you see on the streets are actually disabled veterans and citizens who deserve so much better…)

Applying for government benefits, even those you have worked for and earned yourself, can be a ridiculously long, complicated, and humiliating process BECAUSE they design it to be so. They want to break you down, make you give up, make you give in. They expect the sickest and weakest among us to jump through hurdles on command, knowing it is almost an impossibility unless there are others propping us up.

Honestly, I think they hope that you will die on your own before they have to do a damn thing. I can picture Uncle Sam with fingers crossed, hoping you buckle under the stress and poverty, or even end up taking your own life from the hopelessness and despair of feeling useless, discounted, and vilified by a media that touts how “easy” it is to fool the system and labels those who are disabled as leeches or lazy.

Apparently discrimination laws don’t apply to the government either, since they clearly indulge in age discrimination, something every lawyer will blatantly tell you up front. Even publicly, you can find legal representatives in the field explaining why you are simply fucked if you dare get too sick before age 35, 40, or even 50. So if you are a young adult or middle aged person struggling with a chronic illness or severe pain condition, you had better tell it to get lost and come back in 10 or 20 years. Yeah, that works. After all, young people aren’t allowed to be sick or disabled.

You know, it is really funny, that many of the same people who are so public about being pro-life are also always trying to cut social safety net programs like disability or make them harder to access. If they could, I think sometimes that the government would perform adult abortions on those too weak or sick to continue to prop up their sick, twisted system. Getting rid of us all would be so much easier, wouldn’t it?

Life Update: Jobs, Kids, Writing & Bernie Sanders!

Posted in Art, My Vlog, My Writing & Books, Personal, Uncategorized by

 

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“YOLO” collage on paper by Maranda Russell

Hello everyone! I’m sorry that I’ve been neglecting my blog lately. I hope to start remedying that now. Here is a short list of some of the things that have been going on in my life recently, as well as some of the projects I am looking forward to beginning:

  • For the last 8 months I have been working part-time in an emergency room. During that time I have met some fascinating people, but I have also been witness to a great deal of human suffering. I have always been a sensitive, rather empathic person who feels things deeply and in that way, I feel that this job has affected me greatly. I will be leaving the position soon to pursue other opportunities, but I am grateful for the experience.
  • Recently I have begun to take on more freelance writing gigs, particularly in the field of children’s writing. I have found that one of my true passions is taking the visions of other authors and helping them create great stories for kids. I especially enjoy editing picture books or other types of literature for young readers. Mostly I have been getting clients through online sites, but I am open to offers from other clients, so if you have a children’s book that you would like help editing, feel free to contact me!
  • My husband and I are hoping to start doing respite for kids and young adults with disabilities soon. Ever since we stopped fostering kids, I have missed having children around to play with and care for. I can’t wait to get a chance to have a full house again, even if it is just for short periods of time.
  • My YouTube vlog, Maranda’s Toys & Books, has been growing quickly! Ever since I decided to focus the channel mostly on my nerdy love of toys, books and collectibles, it seems to have found its niche and an audience that is a lot of fun to interact with! For that reason, I will probably be sharing my more serious or personal posts here on my blog from now on.
  • Lastly, this is kind of random…but I’m really rooting for Bernie Sanders! Feel the Bern! Even if he doesn’t end up winning the presidential nomination, I am thankful to see so many younger people step up and show they care deeply about the fate of our country. I think what I love most about Bernie is that he is such a humble, down-to-earth politician. It is truly refreshing to see.

“The Big Bang Theory” Debate – is Sheldon Cooper autistic?

Posted in Asperger's & Autism, Personal by

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(Please note I am just giving my opinion. I do not speak for the entire autistic community.)

Recently I’ve really gotten into watching the tv show “The Big Bang Theory”. I’ve been told for a long time that I should watch it since I love nerdy humor, but I am the kind of person that doesn’t get into things just because people tell me I should. In fact, I am often unlikely to get into something until the popularity of it has died down a bit.

Anyhow, as I watched an episode of the series for the very first time, I could understand right away why many people say Sheldon Cooper is autistic. If he is autistic, it is obviously a high-functioning autism since his IQ is so high and he is able to live a somewhat “normal” life. It is easy to see many Asperger’s or high-functioning autistic traits in Sheldon’s character (although they are obviously exaggerated for comedic affect). He has definite social issues (especially in understanding sarcasm, carrying on a conversation that isn’t within his personal interests, understanding rudeness, showing appropriate emotion, etc.). He has overtly OCD issues where he has to have things the same all the time and struggles to handle even small changes or errors. He is definitely uncomfortable with physical touch or physical intimacy and not entirely due to a germ phobia, although that obviously contributes to the problems.

On the plus side, he has many positive Asperger’s traits as well. An exceptionally high IQ, an amazing gift for his special interests (especially physics), an incredible memory, a unique sense of humor, loyalty to those he cares about and a sweet kind of innocence that is endearing. He is also undoubtedly honest (perhaps brutally so) and dependable. If he does in fact have Asperger’s Syndrome or some other form of high-functioning autism, he is a character that others with the condition may relate to. He may even seem inspirational since he is successful in his career, does have some close relationships and has found a way to not only survive in the real world but thrive to an extent. I find myself wondering if Amy (Sheldon’s girlfriend in the show) may have Asperger’s as well. In many ways she fits the characteristics of high-functioning autism in females (which tend to be a little different than male autism symptoms, typically with higher social abilities).

Interestingly, I noticed that in interviews, Jim Parsons (the actor who plays Sheldon) has said that Sheldon does not officially have Asperger’s Syndrome. The writers and producers of the show say the same thing, although they did explain that the reason they didn’t want to “label” the character was because then they may face accusations that they are making fun of those with the same condition or not staying true to the condition as the character changes and grows over time. I can understand that, although to me personally it would be nice to be told for sure what Sheldon’s issues stem from.

I think it would be helpful in some ways for high-functioning autism to be represented more in media/entertainment in general (as long as it was done respectfully). I personally don’t find it offensive that Sheldon is thought to be funny because of some of his unique personality quirks. Sometimes those of us with autism can be unintentionally funny (even we see that in ourselves at times), but that doesn’t bother me so long as the humor towards us doesn’t turn cruel or mocking.

Either way, I will continue to watch and enjoy the tv show, feeling in my heart and mind that Sheldon is indeed one of us on the spectrum.

New children’s ebook published! “Petar: An inspiring story about an unexpected friendship”

Posted in My Writing & Books, Personal by

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I just wanted to write a short blog post to let all my readers know that I just released a new children’s short story ebook! This ebook, Petar: An inspiring story about an unexpected friendship, is a heartwarming story about seeing past outward differences into the true heart of a person. The main character, Petar, is actually based on a real-life child that I met when I used to work as a teacher’s aide in our public school system. The courage and sweet personality of this child I knew made me want to tell his story. I also wanted to show how kind and compassionate many of the other children in his classroom were when it came to dealing with their classmate’s special needs.

Petar: An inspiring story about an unexpected friendship is geared for ages 7-11 (can be read independently or aloud). You can purchase the short story from Amazon for only $.99 per Kindle download. I hope you will check out my new ebook! If you do read it and enjoy it, please consider letting me know by leaving a review on Amazon!

Why I consider myself an outsider artist…and am proud to be one!

Posted in Art, Asperger's & Autism, Personal by
One of my most recent artworks, "Blood Relations" in pen and ink.

One of my most recent artworks, “Blood Relations” in pen and ink.

For a while, I really struggled to find a place in the art world. I wasn’t sure where I fit in. I have no formal training (other than the art classes I had in elementary and middle school), so I am almost entirely self-taught. I have read some artistic “how to” books, but always tend to kind of do my own thing and follow my own style. Even when it comes to picking art tools and supplies, I don’t necessarily go for the “high art” stuff that costs an arm and a leg. For pen and ink work, I tend to use Sharpie markers and pens and for painting, I use moderately priced acrylic and watercolor paints and usually paint on art board (a sturdy kind of cardboard). I do indulge a bit and get good quality sketching pencils, but they don’t cost all that much anyhow. For colored pencil/crayon work I have used high-priced “artistic” brands, but still kind of prefer the old fashioned Crayola honestly.

So when I heard about the genre of outsider art and that it generally refers to self-taught artists, I was immediately interested. I found out that outsider art is also often linked to artists who suffer from mental illnesses or disabilities, which fits me great since I have high-functioning autism and due to that, may tend to look at the world a bit differently than neurotypicals. Of course, I also have troubles with anxiety and depression, so I may qualify on both counts!

Lastly, I have read that outsider artists generally don’t create for the sake of “selling” their art or obtaining commercial work, but instead make art that is meaningful and appealing to them personally, even if it means not selling much work. In no way do I look down on artists who take on commercial projects or create with an eye to selling (everyone has to eat after all), but I myself struggle to do a good job on any artwork that doesn’t cooperate with my passionate Aspie obsessive interests. I am thrilled when I do sell artwork because it means I have kindred souls out there…and that excites me even more than any financial payoff.

So there you have it, my take on outsider art and why I feel I fit in that category. I know there are many art experts who sit around and debate what true outsider art is and if it even exists, but for me, the outsider art community has made me feel at home…and maybe that matters most of all.