illness

After the Battle is Over…

| marandarussell

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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.)

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I Won My SSDI Case!!!

| marandarussell

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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!

Bad TV Show Depiction of Ehlers Danlos

| marandarussell

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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.

Fluoride Fears

| marandarussell

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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.

Isolation and Loss from Chronic Illness

| marandarussell

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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.

My Four Day Migraine – Ouch!

| marandarussell

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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Another Fun Visit to the ER

| marandarussell

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I spent yesterday in the ER. Always lots of fun. I was rather freaked out because I literally couldn’t swallow at times and felt like I was going to choke to death or something. I also was having chest pains, trouble breathing, and feeling like I was going to pass out. Now I get to go back to the GI doctor because they think there are probably issues with damage to my esophagus.

Still not feeling much better today. They put me on some meds that are supposed to protect and hopefully help repair damage done to the esophagus, but no relief yet. I still struggle to swallow, keep coughing, and feel like there is something permanently stuck in my throat. Eating and drinking is no fun, even the smoothie I tried to drink earlier struggled to go down. My chest, especially around my breastbone feels like there is an elephant sitting on it. Man, this sucks.

Spiral of Anxiety and Fear

| marandarussell

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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.