Tag Archives: fibro

Long Overdue Update

Things have been rough on my end over the past several weeks.  I had the worse flare-up I’ve ever had since I’ve been diagnosed with fibro, and that made my mental health go down the toilet.  I used to kick myself whenever I shared anything that was less than positive, but then I decided that if sharing the truth will help even one person feel a little less alone in their own suffering, then it’s worth it.

The reason things got so bad was because the temperatures have been all over the place.  There was a 45-degree drop in temperature awhile ago, I don’t even remember when.  Up till that point, I was doing alright and seldom needed my narcotics.  I had managed to stretch out the bottle and it had lasted me over a year.  Then I ran out right before the 45-degree drop, which was so stressful on my body that I passed out and had non-epileptic seizures from the pain several times.  I finally got a new prescription and the drug bust commenced.  (As in, busting open the bottle and popping the much-needed drugs!)

I was extremely hesitant to share this with anyone, partly because of the stigma against narcotics and also partly because I am still recovering from being in a church community where some people were extremely opposed to all forms of western medicine.  When I have a flare-up, I still wrack my brain trying to figure out what I could have possibly done to bring it on, which does wonders for my mental health as you might imagine.  I’m learning the hard way that that kind of mental and spiritual damage does not go away overnight.

As for happier news, some of you may already know that I had been in the process of applying for a mobility service dog since last fall.  Well, I finally got it finished and my application has been accepted!  The next step is a home interview with a trainer in the next couple months.  I will share more about all this when there is more to share!

Okay, the brain fog is kicking my butt so I’m going to stop here.  Hope you’re all doing well!

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The Stigma Against Physical Illness and Traditional Medicine

As I’ve mentioned before, health and I have been having a bumpy ride the past several months. My endometriosis came out of remission last year. Along with that came free gifts of fibromyalgia, irritable bowel syndrome, and asthma.

Last fall, I made the difficult decision to do a 6-month stint of Lupron injections, and then I saw firsthand just how stigmatized physical illness and traditional medicine have become. In the age of natural remedies and anti-doctor sentiment, people who choose traditional treatments are harshly judged and verbally attacked. The rheumatologist who diagnosed my fibro gave me an earful about how I never should have finished the Lupron course, and why did I even left them inject me in the first place? (Dr. F, if you’re reading this and wonder why you’re not my doc anymore, your lovely attitude may have something to do with it! Just saying!)

It’s one thing to have legitimate concern about side effects. Lupron came with plenty of them, and that was part of the reason I put off going on the shots as long as I did. But berating people for making informed decisions about a condition you don’t know crap about is WRONG. If you haven’t felt like you’ve been socked in the stomach or like you’ve been impaled with shards of broken glass, then you have no business telling someone they shouldn’t see a specialist or use narcotic painkillers as needed. (Yes, there are appropriate ways to use narcotic painkillers, and most people don’t lose the judgy pants long enough to find that out either.) If you haven’t been dependent on inhalers to jumpstart your lungs when they’re threatening to take a vacation, you have no business telling someone they shouldn’t put steroids in their body. Yes, that comes with a certain degree of risk, but letting asthma go untreated is much riskier. People don’t understand that choosing health treatments, whether traditional or alternative, is taking a calculated risk. You take a calculated risk every time you get in your car and drive somewhere. You could die in a car crash. That doesn’t erase the benefit to be gained from driving to work or to a social event or wherever.

It isn’t just traditional medicine that’s stigmatized. Illness itself is stigmatized as well. People often say that mental illness is no more shameful than physical illness, but honestly, I get more flak about my physical health issues than my mental health issues. Statements like, “You’re too young to be that sick” or “You must have done something stupid” or “G-d hates you” are signs that our society is not as understanding about physical illness as we’d like to think. The natural remedy fad is partly to blame for this problem, in my humble opinion.

I’m all for natural remedies that are safe and effective. I have a handful of natural remedies that can sometimes reduce or eliminate my need for heavier pain medication. But sometimes the natural stuff just doesn’t cut it, and it’s not always safe. Carbon monoxide is natural. It’s also deadly. It’s also possible to be severely allergic to natural ingredients. For instance, California Baby is a popular organic lotion brand. I have nothing against them, but I can’t use their stuff because it contains a plant called calendula, which is an effective eczema remedy for some people. Well, it turns out I am highly allergic to calendula, which I learned the hard way. So that natural remedy is out of the question for me, and people have had the gall to tell me I’m just being stubborn and I should try the calendula again. (I’m as stubborn as all get-out, no point in denying it, but I most certainly should not try the calendula again. I’m a fan of breathing and not breaking out in hives, thank you very much.)

So what do I want people to take away from all this? I guess I want people to listen more and talk less when it comes to other people’s health issues. (That’s the nice way of saying you all need to shut the frack up.)