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.
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.
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.