Archive for the ‘Fibro Fog’ Category


I have good news! Are you interested?

I went to my pain management and spine specialist last Wednesday after work. During the appointment we went over the X-Ray results for my hips and lumbar spine due to the exacerbated pain I’ve had since the fall my beastly dog caused on a walk. There was a concern that my hip fractured or broke.

I’ve mentioned before that my lumbar spine already has bulging discs. The X-ray was for just the lumbar and hips, and since my MRI during the summer, that’s deteriorated, likely due to the fall.

Neither of my hips, which have arthritis, are broken or fractured. That’s the excellent news. The arthritis, however, has also deteriorated and has done so more significantly in my left hip. That’s likely due to the fall.

I’m relieved that there aren’t any fractures. That means that we can take “putting a pin in it”off the table. That’s a huge relief. I guess now I’m wondering what my treatment options are, because I met with the APRN instead of the doctor. When I have pain that, in the moment, is at least a 10 what do I do? I can’t support my body when I’m standing up because the pain is so severe. I feel as if my skeleton is being ripped apart and shattered with a hammer. It’s scary, and it takes my breath away.

Since I’m 42 and never had a bone density test, I’ve requested one to be ordered. I know that it’s been an issue in my family, and with the arthritis, maybe it can help with therapy. I’m already doing aqua-therapy but anything at all that might help relieve this pain and I’m in. The APRN didn’t indicate that the degeneration is severe enough for surgery to repair the arthritis, so I’m guessing that’s not an option right now. And honestly I think that has to be a last resort.

It’s funny, though… my PT for aquatherapy seems to think that surgery with additional PT is preferable to additional medications. She has Fibromyalgia, too, so I’m assuming that she’s aware that every time someone like us has a surgery it further suppresses our immune system because the body has to fight so much harder than is typical to heal, and to fight off even simple infections and illnesses. We also have to cope with having all of the medications administered during a surgery coursing through us for months which affects the medications we’re already on. Anesthetics stay in the body for up to two years, especially when it’s administered in large doses.

I would rather exhaust all other options before considering surgery. Just like before I agreed to try pain medications, I exhausted every other possibility first. And sure… I kicked myself and wondered why I didn’t go to the pain management specialist years sooner when my PCP first suggested it, but this isn’t the same thing. I have a hard enough time healing from paper cuts. 😉

I know, I’m putting the cart before the horse. It was just a conversation I had with my PT on Friday. I’m just trying to work it out in my head a bit. And maybe the APRN didn’t let on how bad it really is. She’s been known to do that.

Oi. I need chocolate. Good chocolate. Better yet, I want someone to give me good chocolate.

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I woke up with a feeling this morning, attached to a phrase:

Purple Rose Inside Dew Drop; found on Google images, no original credit was found

Purple Rose Inside Dew Drop; found on Google images, no original credit was found

A single dew drop can affect the entire blossom. Such is the effect of Fibromyalgia.

I wish I could remember where I first read that; all I remember is that when I did, I cried. I’ve never forgotten it. For some reason it’s been on my  mind today. I wish I could give that quote proper credit.

While thinking about that single dew drop, it made me think of this poem by Issa, also known as Kobayashi Issa, a Japanese poet known for some beautiful Haiku.

 

 

 

 

 

A world of dew,
and within every dewdrop
a world of struggle
Issa 

 

In the cherry blossom’s shade
there’s no such thing
as a stranger.
Issa

 

I found this one below on a site called HaikuGuy.com where he’s compiled 10,000 out of 21,000 of Issa’s poems. This one makes me think of Leo, my dog:

1806

.草の露先うれしさよ涼しさよ
kusa no tsuyu mazu ureshisa yo suzushisa yo

dewdrops on the grass
at first so happy!
so cool!
Issa

Since I’m sharing quotes I enjoy here’s another one:

“Where flowers bloom so does hope.”
–  Lady Bird Johnson

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I really need to write an entry about managing my spoons per day, because at the moment I’m having trouble leaving myself enough to even get through until 4:00 p.m. during the school week.

I know that I need to recenter myself, refocus, and remember to simplify. I need to use the tools at my disposal.

I need to remind myself of how to do those things and what those tools are.

Before I can even write that blog… I need to take a big breath. In through the nose to the count of five, with the eyes closed. Pause. Out through the mouth until all of the air is gone. Pause. Breathe in through the nose to the count of five. Pause. Breathe out through the mouth until all of the air is gone. When you do this breathing exercise, think of nothing except the breathing. Focus and direct all efforts on your breathing. Do this five times without rushing the process. Keep your eyes closed, and don’t allow outside distractions, such as children or spouses but most especially your phone to interrupt.

This exercise takes as long as it takes. Do it twice if you need, but this exercise will force your brain, body, and anxiety to relax. Bringing in oxygen and forcing out thoughts does wonders.

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You know what I just realized? I write a lot about disability and advocating for disabled individuals. I write a lot about acceptance in disability, whether you’re a parent, friend, coworker, or even someone who has never met someone with a disability (that you know of); and yet I’m not sure that I’ve ever explained in the simplest of terms what a disability is.

I just get so fired up.

Disability is a physical, neurological, or mental condition that limits a person’s movements, senses, or activities. It may cause impairments, infirmities, and disadvantages, to performing activities in society due to the barriers that exist.

What I try to address is this:

Barriers exist not because someone is disabled, but because society as a whole hasn’t figured out how to:

  • Fully accept disabilities as normal and nothing to be ashamed about
  • Fully accommodate all disabilities and invest in the people who have them
  • Incorporate Universal Design so that ALL PEOPLE may participate in ALL ACTIVITIES equally

And those things are important because people who have disabilities are PEOPLE. People who are deserving of being treated with dignity, respect, grace, and equality to be viewed as valued members of society that contribute as equally as anyone else can.

This is a lesson that you’ll learn well when you become disabled through an accident, illness, or age if you’re not presently disabled. 🙂

 

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I don’t write about this often even though I’m sure a lot of you could empathize. Fibromyalgia and weight issues often go hand in hand.

The thing is, it’s usually not for the reasons you might think. There are many who have Fibro that are underweight, and can’t seem to gain no matter how much effort they put in to make sure they get a calorie packed diet. There are many who are overweight and can’t seem to lose no matter how healthful and active they are in spite of the pain.  I don’t know if people realize just how hard it is to have an appetite when you’re in moderate to severe pain 90% of the time. Pain suppresses the appetite. Many medications suppress the appetite as a side effect. With Chronic Fatigue Syndrome as a co-diagnosis, it’s hard to eat if you’re so fatigued you can’t even chew or blink, let alone cook a full meal or go grocery shopping very often.

The fact is that no matter how healthfully we eat and are active in spite of the pain and fatigue, we have to deal with the biology of the disorder and additional health issues and co-diagnoses that are part of the very real chronic disorder that has a mind of its own. We do the best we can when we can as often as we can. We just hope it’s enough.

I’ve been fat, and I’ve been slender. I’ve been in between too. People treated me better when I was in between than when I was fat. People treated me far, far, far better when I was slender than when I was in between or fat. Because due to Fibromyalgia, my weight blew up to 280 lbs on a 5’4″ frame.

Give me a moment to digest the fact that I’m divulging this sort of information.

When I was That Fat, people treated me shamefully in public. People, nurses, treated me shamefully in doctor’s appointments. People feel obligated to say nasty things about food intake and exercise, and apparent lack of willingness to conform to anything healthy yet have the nerve to complain about being heavy. It’s still acceptable to fat shame here in America because A.) people think it’s helpful to point out the fat and ugliness of it and B.) they think it’s motivational to be rude and mean and C.) some people just think it’s funny to shame people due to their size and act like bullies.

Since I started to lose the weight, in the typical Fibro start and stop fashion, I have dropped 85 lbs so far. This number is accurate as of 1 1/2 weeks ago. And let me tell you, I’m thrilled over breaking that 200 lb barrier. It took me six months to do that with tripled efforts, which means for me trying to fit in 2500 calories a day with as much full fat in whole foods as possible. I try listen to my body when the fatigue takes me down. Managing the pain, managing the relief so that I could move more easily has helped. A few months ago we got a wonderful new mattress so being more rested helps.

During all of time, with each 15 lb mark of weight loss, I see and feel a difference.

Oh, not a difference in how I feel physically. My pain is still there in full force and in fact I’m in far more pain than before I started to lose the weight I gained. That weight that never belonged there.

There’s a difference in how people are treating me and looking at me. People are offering me their places in line again. They’re smiling at me again, more smiles with each pound I lose. More doors being held open for me, where when I was fat, people made it a point of looking me in the face and letting the doors close.

There are people asking me if I need help. People are complimenting me out of nowhere lately on my clothes when I run errands after work. Strangers.

People are noticing my pain now. They are actually seeing my face. They see the pain in my face AND my body, and then they see my cane, and they’re kinder.

I’m not behaving any differently. I’m still me. The only real difference is my weight. This all feels good because I never realized before how kindly people treated me when I was slender. I sure did notice while at my fattest how poorly people treated me. I was invisible to many, less important. Even certain family members. Slimming out somehow is legitimizing.

That angers me a bit, but saddens me more. I think maybe I don’t need to explain why. You guys are pretty intelligent.

But guys… I’ve lost 85 lbs. I know I’m poopooing it, but I am happy about it. Maybe my pain isn’t better, but I know that my risk of Diabetes is down; my risk of Heart Disease is down; and even though I have very low cholesterol intake, my body was producing more bad cholesterol on its own while heavier. I was also drinking more coffee, though, which raises the bad cholesterol readings. Yes…. yes…. while still a coffee fiend I did reduce my coffee intake to two cups tops a day.

My next goal is 25 more. I know it’ll be slow, and that’s okay. If I never lost another pound but suddenly magically had Disney Princess hair, I’d die happy in old age (somewhere in the far future, I hope).

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There’s such a great not-knowing because there’s the privilege of not *needing* to know until one *must* know in the so-called abled world. I hate that word, abled, as if having disabilities means someone isn’t abled or, in the common vernacular, capable of performing tasks of worth for the self, family, or society. There’s also an unawareness about intersectionality regarding multiple disabilities, as if it’s not possible to have more than one disability. But wait, there’s more… intersectionality with disability also includes gender, culture, ethnicity, abuse history, poverty, and other marginalized groups overlapping with each other.

It’s a privilege, but it’s also insensitive and inconsiderate. I’ve written about disablism before, ie. the attitude people have against disabled people and the discrimination. The article I’m sharing talks about how so much of it isn’t blatant and in your face cruel, and may seem like it’s not a big deal to those who don’t have (or don’t accept they have) disabilities. Very often, the person that’s engaging in disablism (ableist behavior) may even think that they’re showing compassion and being kind and not realizing that they’re being condescending, rude, or even harmful to the individual and disabled community.

I can give an example or two.

I drop my cane often, sometimes in public. Yes, I keep it with me always even if I don’t need it at that second because at some point in the near future I’ll likely need it. I can’t really leave behind what’s usually my third leg. 😉 Anyway, I drop that thing frequently and there are times when I do it in public, strangers will pick it up for me.

That seems so kind and considerate, right? In that immediate moment their instinct was to pick up the cane so I wouldn’t topple over into the egg display. The problem is that they didn’t ask first. It’s a little presumptive that I can’t pick it myself, even if I may actually be in so much pain I can’t pick it up myself. Most people who haven’t been around others who use canes (or haven’t used canes themselves) don’t know where to touch the cane when picking it up, and instead pick it up by the handle… and I don’t know if they wash their hands after using the bathroom or sneezing or coughing. I simply need someone to ask,

“Hi, do you need help reaching that?”

 

People do that so-sorry head tilt with a pout and sorrowful expression when they hear that one of my daughters is autistic.

“Oh my god, how do you live with pain like that? I couldn’t live that way. Plus three girls? And one with Autism? I really don’t know how you can handle all of that. I couldn’t do it. But I ADMIRE YOU. You’re SUCH AN INSPIRATION.”

Not enough of an inspiration that you’d imagine yourself living with a disability or living with a child that’s disabled, apparently.

People send me tons and tons and tons and tons of advice from anti-modern medicine and anti-doctors and anti-education and anti-science propaganda web sites that they think will “cure” my pain and depression as well as my daughter’s Autism, and my other daughter’s ADHD. If I take the time to respond and actually refute the trash with proof and science, the response is usually,

“Yeah, but what if? So and so said that they used it and after six months they felt better, and their cousin’s friend was actually cured!”

Mmm hmm. What if. What if the snake oil salesmen are right, and all of those hundreds and all of those thousands of dollars of tainted “essential” oils I’m supposed to use for the rest of my life are a great “cure.” Along with the food supplemental companies that are so much better than actually eating real food, that really want you to join and sell their food-like products that are packed fully of allergens. Not to mention the insistence on avoiding real medicine for special filtered waters you can only buy from wherever. All of this instead of eating real good whole foods and exercise that’s tolerable with good medical care. Everyone else has the cures. Everyone else knows The Cause and who to blame.

My favorite is,

“Exercise helps. That Lyrica commercial says a body in motion stays in motion. How active are you, like REALLY? You ought to join a gym and try Lyrica.”

 

Yeah-no. All my nope. That commercial is irresponsible, and I could throw a tantrum about it right now, but that’s not the point of this particular post. It’s the disablism in the meaning well, the knowing better, the feeling so sorry, forgetting to ask permission, and so much more.

And here, now, is the post that inspired me from The Caffeinated Autistic. Much more eloquent than I managed to be.

Blogging Against Disablism: Sometimes it’s subtle…. – The Caffeinated Autistic

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I’m going to start right out of the gate admitting that I realize there are probably hundreds of blogs addressing displeasure, calamities, and reasons for and against DST.

I’m not those blogs. 🙂

I know it’s a struggle for households that don’t have children, and households that don’t have children or adults with any sort of disabilities or neuro-diversities.

We’re not those households. 🙂

I could talk about the fact that during the week after Daylight Savings Time kicks back in and we’re forced to move our clocks ahead an hour on that predetermined agreed upon day, are the most car accidents and fatalities. People are late to work that entire week. It takes a week or two for most people to get their sleep cycles adjusted because it may seem like a simple one hour change, but we’re actually shifting our entire day to accommodate this change. We’re losing more than an hour of sleep.

I could do more than mention them and go into lots of detail, but I won’t. I’m too tired.

In a household where there’s someone with physical disabilities (me) and someone with neurological diversity (two teens) there’s far more involved. As small children and through elementary school we would try to prepare by adjusting bedtimes two weeks prior to DST. We’d try to adjust meals as well. Slowly, but surely we’d try to adjust the routine and schedule.

It didn’t matter. We end up dealing with a minimum of two weeks of tragic drama, and with Sweet Girl it’s gone as long as six weeks. With Dear Girl she usually adjusts within the two weeks, but it’s a tough two weeks. Youngest, Darling Girl goes with the punches.

This year, it’s only been five days in and I’m wrecked. My five hour work day should feel like it’s over earlier in the day, but it feels longer, and so I hit my wall earlier than usual. I’m up earlier than usual this week, that’s what my body is saying. I get home and if I don’t prepare supper early to heat up later, I know I won’t be able to from the pain or chronic fatigue. Already this week I’ve had days where I had to go straight upstairs to have a good lay-down.

Sweet Girl’s already-difficult time due to needing a break from school (our town skipped February vacation and they have to wait for April this year) has just been exacerbated. Mornings are already difficult, so ultra-creative motivations and soothings are in order. I just feel terrible because some days I have to simply get Completely Parental and use my I’m Serious Because I’m Your Mom Voice. 😦  Prior to coffee sometimes. Sometimes I’m so tired and grumpy right along with her that I actually forget to make my coffee.

Dear Girl informed me on Monday or Tuesday that I need to get to The Guy Responsible For DST prior to having my early-morning coffee while still in my prior-to-early-morning-coffee-mood and Have A Talk with him. I wouldn’t be making any friends. But he WOULD stop fucking around with time changes.

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