I Am An Obsessive Collector

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Part of my toy/collectibles/art room, unfortunately you can’t see all the stuff organized in the closet or in the cabinets behind me.

I collect too many things. I collect tons of toys/action figures/dolls/squishies/stuffed animals/minifigures (Barbie, My Little Pony, Sesame Street, Looney Tunes, Lego, Nickelodeon, Disney, Schleich, Funko Pops, Reborns, Cabbage Patch Dolls, Coraline, etc.) I have an entire room for all my toys and collectibles. I collect books, especially children’s books and books about subjects I am obsessed with, ranging from Michael Jackson, Nirvana, and Dance Moms, to art/artists, writing/writers, poetry, comics/manga, and antique books. The books also have a room of their own, which they share with my husband’s smaller but still sizable book collection (mostly history, true crime, and science fiction grace his shelves).

I have a huge collection of art supplies and stickers (which also get shoved into my extra “toy room”). I have a large collection of cds, especially from my favorite artists (MJ again, Nirvana, Foo Fighters, Enya, Simon & Garfunkel, The Beatles, 60’s 70’s & 90’s hits, Disney soundtracks, etc.)

I have an entire dresser drawer full of bookmarks, a wide selection of cute or nerdy notebooks/journals/stationery and a cabinet full of magickal/pagan themed objects I use for my little ritual altar. I also have a large collection of sentimental items I have saved ranging from photos to cards to letters to objects from loved ones who have passed on.

I am emotionally connected to many of the things I collect and the idea of parting with them is traumatic. I figure this need to collect things is part of the autistic side of me, but sometimes I become overwhelmed by the size of my own collections!

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I Hate Disappointing People

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You ever go to a doctor’s appointment and feel like you somehow disappointed them? That’s how I’m feeling today. I went to see my psychiatrist and while he didn’t say anything overly negative or mean, I just left with the feeling that somehow he was a little disappointed in me.

Perhaps I am projecting here, but I kind of feel like he isn’t quite as supportive as my other doctors about my going on SSDI. Not because he doesn’t think I have real problems and medical conditions, but because he seems to think I have a lot of potential and maybe he thinks if I get disability I’m just going to sit around and do nothing the rest of my life.

This may be partly my fault if he has that impression. After all, I don’t normally talk about all the stuff I do enjoy doing while there. I only see him every couple months for a short visit, so I tend to focus on what is going wrong, not what is going right. I don’t talk about all the art I make and sell or the books I write and sell. I don’t talk about my blogging. I don’t talk about all the people I correspond with on social media. I didn’t mention that I was recently made a board member on the International Board of Sensory Accessibility. I didn’t tell him about the art contest I submitted three artworks to this month. I don’t tell him about the online communities for chronic illness, chronic pain, autism, and other conditions that have given me a chance to support others and receive support myself.

I kind of wish I had mentioned some of those things now. Maybe next time.

My Four Day Migraine – Ouch!

Well, my one-day migraine from Wednesday turned into a four-day migraine that I finally had to go to the emergency room to get rid of this morning. They pumped me full of a bunch of drugs that did take the worst of it away, although I must admit I’m scared it will come back once those wear off. They did give me a steroid shot to help stop rebound migraines, so hopefully that will work.

I’m exhausted and somewhat depressed about the whole situation. I went at least a couple years with barely any migraines and then this just pops up out of nowhere. I can’t help but think part of it might be all the stress about my upcoming SSDI hearing. I try not to consciously think about it, but that doesn’t work so well for obsessive minds like mine.

I’m sure you guys understand that this will be a short post since I’m not feeling too great, but here is a picture of an extremely ugly, grumpy stuffed lion for you to enjoy:

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Rough Week, But Some Good News

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This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:

Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.

Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!

Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.

Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.

 

New Artworks for an Autistic Music-Themed Art Contest!

I made these 3 new mixed media ACEO collages for a new autistic music-themed art contest being sponsored by Mainly Mozart and The Art of Autism, who I have worked with many times in the past for various contests, promotions, and art projects. This particular art contest is called “Finding Your Inner MozArt”. Winners get a cash prize, as well as having their works displayed and put up for sale at Mainly Mozart’s month-long festival in San Diego, California. I hope I win, or at least place!

maranda russell, untitled #1, 2.5 x 3.5

maranda russell, untitled #2, 2.5 x 3.5

maranda russell, untitled #3, 2.5 x 3.5

Out of Anxiety Meds & Body Dysmorphia

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I’ve had a rough few days. I think the main problem is that I’ve been out of my anxiety meds for a while because Buspirone is on national back-order for some reason, and my pharmacy doesn’t know when/if they will get it back in. I contacted my psychiatrist today to ask him to prescribe something else, hopefully he will do so soon. I was going to try to just hang on until my appointment with him at the end of the month, but I am having some real anxiety issues cropping up without my meds.

For one thing, I’ve been having some body dysmorphia issues, which happens now and then. I’ve heard that issues like these are common among high-functioning autistic people. I’m not trans or anything like that. I don’t want to be a man. But, for some reason, ever since I hit puberty, I’ve always felt kind of uncomfortable in my own body. I’m not sure why. I don’t think I’m extremely ugly or anything like that, but it is like there is some kind of disconnect in my brain when I look in the mirror. I feel like my body looks wrong somehow or like it isn’t the body I should have. It is hard to explain.

I think part of it has to do with always feeling unfeminine. Like I said, I don’t want to be a man, but I’ve always felt like I’m not very good at being a woman either lol. I feel like a tomboy, I always have, yet sometimes when I look in the mirror I look more like a woman than I feel. It is weird. I also have always wished I was thinner, more flat-chested, and athletic-looking overall, but my genes just don’t cooperate with me. It is funny to me when I hear women saying they want bigger boobs. I’m always like “why would anyone want that?”, but I know everyone has their own insecurities, and some people obviously have different ones than I do.

I’m a High-Strung Mess

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I am currently a high-strung mess. As my SSDI hearing looms nearer and nearer, I find myself obsessing way too much over it and almost panicking about the fact that I feel powerless over what will happen in the end. I am trying to do absolutely everything I can think of to prepare for it and make sure we have good medical documentation especially, but that in itself is stressing me out because it means having to be assertive and ask for things from my physicians which I despise having to do. I HATE having to ask ANYONE for ANYTHING. It is just the way I am, but sometimes you have to do the things you hate…

I do not do well when I feel like I am not in control of a situation. My anxiety can’t handle the uncertainty and the endless waiting. I would almost rather deal with the worst case scenario immediately rather than be in limbo for months waiting for someone else to decide my fate. On top of that, I feel like I am annoying those around me (lawyer office employees, doctors, my poor husband) because of my intense anxiety state. I talked to a paralegal today and she told me to take a deep breath and relax lol. If only I could! I can do the deep breath, but the relaxing part just ain’t kicking in.

The heightened stress is taking a physical toll too, as it always does. My upper back/shoulder/neck area is flaring again to the point that I am regularly rolling on Lidocaine and had to take some Tramadol. The pain is so bad I can’t do any household tasks, which makes me feel bad too. Even typing this is painful and requires frequent breaks.

Now I feel like my whining is probably annoying all of you too lol. Sorry if that is the case, but I just needed to vent!

Spiral of Anxiety and Fear

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I am feeling so incredibly stressed about my upcoming SSDI hearing and everything related to it. It has become an obsessive thought pattern that I can’t get out of. This always happens when something I am super nervous or scared about is looming on the horizon. My mind is a circular track of “what ifs”, incessant thoughts about things I need to do, fears that I will make a mistake and blow my last chance for SSDI benefits, and fear that if I fail and am denied again, it will once again send me into a suicidal spiral of feeling worthless, disbelieved, and like I will forever be a burden to society and those I love.

Tomorrow I have to ask my psychologist to fill out a RFC (Residual Functional Capacity) form for the hearing. I think she will be open to it and want to help, but I am still anxious about asking and scared of rejection. I have to ask my primary care physician to fill out a similar form when I see her next week, and am even more nervous about that because I know she is often rushed and I don’t want to be an inconvenience or annoy anyone by making demands.

As you can see, I struggle greatly with asking anyone to do anything for me. I’m not sure if it is just my lousy self-esteem or what, but I always feel like anything I need is an imposition on someone else. Maybe the result of being raised by a narcissistic parent? Growing up, I often was made to feel like anything I needed (emotionally or physically) was selfish and inconvenient to those around me. To this day, I struggle with feeling like I am actually entitled to anything – even basic human respect.

I think my fear of being disbelieved about my disabilities also stems from the fact that when I first started getting really sick, even my own husband and family didn’t believe me. My husband came around first, when he saw how much I truly was suffering every day and how even the things I loved most were being ripped away from me. He has even apologized for his initial doubts. Some of my family (including in-laws) still make me feel invalidated, but I’ve come to the conclusion I can’t do much about that.

Feeling Low After Lawyer Visit

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Today has been a rough day 😦 I had to get up early to go to an appointment with my lawyer to talk about my upcoming SSDI hearing in February. I woke up feeling exhausted, achy, and sick to begin with, my stomach and digestive system freaking out from the anxiety of the change in routine as they always do.

The meeting went ok, I suppose. The lawyer seems really nice and genuine, but the whole thing depressed me. For one thing, it isn’t easy to have everything that is wrong with you physically and mentally just laid out on the table for everyone to see. It isn’t fun facing the reality of my own limitations and self-perceived flaws. I know I can’t help having mental and physical issues, but it SUCKS to have to dwell on them and think about them more than I already do normally.

The lawyer wants me to try to get my doctors to fill out some forms to take to the hearing and that gives me high anxiety. I hate having to ask anyone to do anything, it is just the way I am. I have a deep fear of rejection. What if they say “no” when I ask them to fill out the forms? Then I will feel even lower than I already do. I know my doctors are caring people who try to help me and they will probably be more than willing to help, but my brain just can’t shut off the “what ifs”.

I came home from the lawyer visit, cried for a little bit, then crashed for a few hours in bed. I still feel like absolute crud, but am trying to get back into my normal routine. I am desperately in need of some self-love and comfort right now, but that isn’t easy for me to do.