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.

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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.

 

Even My Dream Self is Depressed

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I’m still struggling quite a bit. Feeling lethargic, numb, and exhausted all the time. Still not wanting to get out of bed, even though I’m not finding much refuge in sleep either, since my dreams the last couple nights have been overrun by nightmares. Quite an assortment of bad dreams too: A dream about my husband not loving me anymore, a dream about giant ants, a dream about trying to get kicked out of high school. Even in my dreams I’m miserable. During the high school dream the reason I wanted to get kicked out was because I was so depressed I just couldn’t function and wanted to go home and crash.

I’m hoping this depressive episode passes soon. I’m not sure if it is maybe exacerbated by seasonal affective disorder since I haven’t seen the sun in a while, or if this is just a shitty coincidence, but I wish I felt better.

Depression Slump

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I’m going through a depression slump right now. I can tell because I am sleeping half the day away and not wanting to get out of bed even when I do finally wake up. I don’t feel like writing, creating art, talking to anyone, or simply functioning. I want to stay in bed and either sleep my life away or curl up under all my heavy blankets and leave reality behind.

I have some important appointments coming up soon (my Ehlers Danlos testing and my SSDI hearing top the list), but right now I don’t even care about those things. I don’t feel like doing them and the thought of dealing with them is overwhelming. I hope this slump passes soon.

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.

Hemp Seed Oil Side Effects? Medical Marijuana Scam?

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I didn’t post the last couple days because I’ve been sick. At first I thought I was having an adverse reaction to hemp seed oil, which I decided to try for the first time Friday. I was hoping it would help my chronic pain issues, but within a few hours of taking it, I developed a horrible headache (almost migraine level) and then became really nauseated and felt like throwing up all night.

However, yesterday I made sure not to take the oil again and I still had a rough day with nausea and other stomach issues, so I’m not sure if an adverse reaction could last that long or if maybe I just had a stomach bug or something. I hope it wasn’t the hemp seed oil, because if that makes me sick, I would worry that medical marijuana might do the same, which I am still hoping to try if I can get my Ohio prescription card.

The really sucky thing about Ohio’s medical marijuana program is that they only approve certain doctors to prescribe it and it sounds like you have to go through certain organizations to get approved….organizations that do NOT take any kind of insurance and charge a couple hundred bucks just for your first visit. Almost seems like a scam in some ways. I’m doubting you can use insurance on the prescriptions themselves with a system like that, but I’m not sure. So honestly, I don’t know if I can afford medical marijuana 😦

As for my possible adverse reaction, I think it worries me even more because my mom always told me that she could never smoke weed because it gave her migraines and made her physically ill. I was hoping I didn’t inherit whatever it is that caused that reaction in her, but now I’m worried maybe I did. It would suck to spend all that money on a medical marijuana card and then find out it made me feel worse.

I Froze My Butt Off at a Christmas Theme Park!

I’m feeling rough tonight, maybe because last night I went to a little Christmas-themed park and got really cold, which often tends to aggravate my CFS, Fibromyalgia, and Ehlers Danlos joint issues. I had a great time though and wanted to share a few fun pics of the night.

Here is me getting cozy with the Gingerbread Man:

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Who doesn’t love a big fire pit when it’s cold out?

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Here is some crazy guy climbing the giant Christmas tree (I’m guessing he wasn’t supposed to be doing that):

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Is it just me, or are these trees a bit spooky?

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Pretty lights on the water:

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Christmas and Family Forgiveness

Yesterday my husband and I traveled over to Indiana to meet my mom and her husband for Christmas dinner. We all decided to meet at a truckstop that is about halfway between us, so that neither of us would have to cook, clean up, or drive too far:

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I genuinely had a good time and am glad I’ve been able to spend more time with them recently. Those of you who have followed my blog for a while, may remember that there has been a lot of water under the bridge between my mother and myself over things that happened when I was growing up. She made some huge mistakes, and as is often the case, my sister and I had to pay for many of those choices just as much as she did…maybe more in some cases.

She genuinely seems to be regretful and is trying to make things better between us, so although I am always going to be cautious and protective of myself, it feels good to be able to embrace forgiveness for my own peace of mind and well-being. Forgiveness doesn’t mean that what we went through was ok, or that the damage wasn’t done, but it does mean that it doesn’t have control of my life, my mind, or my heart anymore. I can move on.

I am somewhat a believer in the saying “When we know better, we do better”. Some of us take a long, long time to “know better”, but healing and wisdom are ours once we finally do face the truth.