I’m feeling a bit like this weird-looking guy I sketched the other day. Dazed, confused, and like I’ve been through the wringer. I am so very happy I won my SSDI case, but I’m almost a little in shock and kind of feeling like “what do I do now”? After fighting for something for so long, it is kind of weird to actually get it and have the fight over. I’m not complaining at all, I am SO very thankful, but my brain just needs some time to adjust and move from the mentality of scarcity and fear to one of feeling more secure.
(Find my art for sale on my Ebay store.)
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!
I love the tv show House. This medical drama, based around the character of a doctor with Sherlock Holmes mystery solving abilities is often smart, informational, and amusingly ridiculous. The main character (House) is often a total asshole, but he is so lovably grumpy, enormously flawed, and irresistibly outrageous that I can’t help but like him.
Last night I finally caught their episode that features an Ehlers Danlos patient, an episode I had been looking forward to seeing for a while. Unfortunately, I was really disappointed with the portrayal. First off, very little of the episode actually had anything to do with the woman with Ehlers Danlos. It focused more upon her husband for the first half at least.
When she was finally introduced into the storyline, she was presented as someone with a horrible mental illness (hoarding), which a casual viewer could easily think was due to her forthcoming Ehlers Danlos diagnosis. The last thing those of us with EDS need is to be confused with mental illness conditions even more.
Also, the only symptoms that are even discussed to be related to EDS in the show (and thus lead to the official diagnosis) are the fact that the woman’s heart responded badly to some medication and she had suffered several miscarriages. That was it. Yes, EDS can contribute to miscarriages, but it is far from one of the hallmark symptoms of many EDS sufferers. Nothing was mentioned about hypermobility, chronic pain, dislocations, joint issues, gastrointestinal issues, autoimmune issues, bruising/scarring, loose skin, etc.
Overall, a very disappointing experience as a viewer and EDS patient.
Sometimes I worry about fluoride…specifically ingesting too much of it. Too much fluoride can cause a condition called skeletal fluorosis, which is often mistaken for arthritis or fibromyalgia. Most people know our toothpastes and other dental products often contain fluoride, but many don’t realize all the other sources of fluoride we ingest every day.
There is fluoridated water of course, which has been a point of contention for years. Should the government put fluoride in the drinking water? Is it necessary? Especially when most Americans use toothpaste with fluoride anyhow? Did you know that both green and black tea (two of my favorite drinks) are a high source of fluoride? It often has way more fluoride in it than the water, often over the “safe limits” established by the government (which are still debatable).
Because our water is fluoridated, almost everything made with water stands a chance of being fluoridated too – all our drinks, alcohol, soups, fruits, grains, vegetables…even our meat! (Often our food becomes contaminated with fluoride more due to pesticides rather than our water, and our meat gets contaminated because animals eat food with these pesticides in them.)
Some people claim antidepressants like Prozac can contribute to fluoride poisoning, although this is definitely debatable. I’ve heard scientists argue that because of the way the chemicals bind together in the drug that the fluoride should all get washed out, but who knows for sure?
Maybe I am just an anxious, sometimes paranoid person (all true), but maybe this really is a problem that is often ignored or overlooked. After all, fluoride is still a poison.
I’ve been feeling rather sad and isolated the last few days. I think a lot of it comes from the stress of dealing with chronic illness and chronic pain. Anyone who has chronic illness is probably familiar with spoon theory, an illustrative way to describe why you have to choose carefully how to use your energy to do things when you have very limited physical ability.
In other words, sometimes you have to choose whether you would like to go out and socialize for a short period of time, spend that energy getting some much-needed housework done, work on a hobby or personal interest, or even simply take a shower…because you just don’t have the energy and the physical ability to do them all within the same day like a healthy person could.
Most of the time I end up choosing to spend my “energy” and limited abilities to either spend time with my husband, work on my art/writing/blogging, or take care of personal hygiene or light housework. Prioritizing these things leaves no extra energy or time to socialize on a wider scale or do much outside of the house, other than maybe occasionally going out for dinner or doing a little necessary shopping. Even the thought of going to a movie is often too exhausting to contemplate.
All of this makes me sad, especially when I remember how I used to enjoy so many other things I can’t do any longer. I used to love hiking, playing tennis, roller skating, bowling, dancing, working, swimming, being a foster parent, and going out to various activities with people I know or share interests with. I’ve pretty much lost all of that for good. And that is depressing.
I wish you could see
the spectre of depression
haunting my days…
dragging his knuckles
through the miry muck
and leaving a trail
of icy numbness behind.
(Poetry by Maranda Russell, marandarussell.com)
A couple days ago, I was watching Kanye West’s “interview” in the White House Oval Office with Donald Trump. I must admit I mostly wanted to watch it just to see what kind of crazy stuff Kanye would come up with. To be frank, he has always seemed a little like a loose cannon, even back in the days when he announced that George W. Bush didn’t care about black people, or when he interrupted Taylor Swift during her award speech to say that Beyonce should have won.
However, when I heard Kanye say during his recent interview that he had been diagnosed bipolar, suddenly, a lot of things clicked into place. I hadn’t really thought of it before, but Kanye does come across as highly manic in his speech sometimes, especially when he is all worked up about things and causes a scene. He definitely seems to have pressured speech (his words just flow out everywhere and in every direction), and I recognize flight of ideas as well (his train of thought is often hard to follow, he shares his thoughts in a way that definitely isn’t always linear or seemingly coherent). Kanye often appears paranoid during these times as well.
I heard that after the interview, Kanye was asked about the bipolar diagnosis and said something along the lines that he thought he was misdiagnosed or he had somehow been cured (contradictory thoughts together). Even this reminds me of manic episodes, after all, what is more predictable than someone with bipolar denying their disease or refusing treatment when in the throes of mania?
Anyhow, my main point is that as someone who has bipolar type 2 myself, I do have empathy for whatever Kanye is dealing with mentally, even if I don’t agree with some of his bizarre or outlandish statements.
Hello everyone! I don’t want to bore you all with the continuing mini-drama of my wisdom tooth surgery aftermath, but I know many of you genuinely want to know how I’m doing, so I decided to do another update, this time I’ll just bullet-list what has been going on the past few days:
- Wednesday I went to the dentist in the morning, where he did indeed diagnose me with dry socket. He cleaned out the area and then put a clove oil soaked material in there. It didn’t hurt much when he did that, but the incredibly strong taste of the cloves made me horribly nauseated the rest of the day and made everything taste disgusting. It was so strong, my husband could smell the cloves across the room when I had my mouth shut!
- The clove stuff did eliminate most of the pain for a couple days, but this morning (Friday), that awful deep, throbbing ache has returned off and on. I do have more clove oil I bought, but the scent alone of it makes me so sick, I honestly don’t want to use it. Right now I am trying to get by taking the maximum amount of Ibuprofen and Tylenol, while occasionally using Ambesol to numb the area.
- I do still have opioids left, and it is extremely tempting to use them, but I took them so much the first few days after the surgery that my bowels have become clogged pipes 😦 I hope that isn’t TMI, but it is a common side effect of opioids, and when you already have IBS like I do, I think you are even more prone to stuff like that. I have been taking stool softeners like crazy, eating mushy prunes, and even broke out a little Exlax, but nothing yet.
- By the way, I forgot to mention that after I got home from the dentist on Wednesday, the blood clot on my other lower socket became dislodged and lost, so now I technically have TWO dry sockets. That was SO frustrating! If it was going to come out that day, why couldn’t it do so BEFORE I visited the dentist? Luckily, that side does seem to be a bit further along in healing, so it isn’t as painful overall as the other side, but it is still annoying.
- I have also been running a fever off and on, which seems a bit concerning considering the amount of Ibuprofen and Tylenol I am taking. You would think that would knock out any fever. I can tell right away when I am running a fever because I will get these intense sweats, and become even more nauseated and dizzy than I am already. Most of the last few days I have had to spend flat on my back most of the time due to that dizziness and nausea.
Well, that pretty much covers the last few days. I hope this is over soon. I appreciate all the concern and comments you guys have been leaving. It means a lot to me when I am feeling so poorly, even if I don’t feel well enough to write long comments back.
Not long ago I had an infected wisdom tooth, so unfortunately, the surgery I have been putting off to get my wisdom teeth out is now more of a necessity. I am scared shitless, and I’m not even sure why.
I keep telling myself it is a minor surgery. Outpatient even. I’ll go, get them out, come home, and likely crash for a few days. Then hopefully it will all be behind me. The teeth are impacted, which makes the surgery more complex, but I will be put out for the operation, so I’m not sure why I am so panic-stricken at the idea of having to do this.
To make matters worse, the first appointment I could make to get it done isn’t until the end of August, so I have an entire month to keep freaking myself out. I keep trying to distract myself or think positive thoughts, but I feel such a sense of dread that I just can’t shake, and it is making me spiral into a depression as well.
I did the typical Aspie thing, and tried to make myself feel better by finding as much information as I could about the procedure to lessen the anxiety, but it hasn’t helped much. I could quote you stats of all the risk factors (and ways to prevent them), draw you a diagram of the procedure, or explain step by step what will be done, but it isn’t helping me to let it go.
Maybe this is my OCD coming out in full force (an inability to NOT fixate on something I wish I wasn’t thinking about at all), or maybe it is just the anxiety of the unknown, since I have never had surgery of any kind before or been put out for any kind of operation…but I wish my brain would just shut the hell up about it! I’m sure my poor husband would find that a relief too since he has to deal with his basket case wife for the next month 😦