Terrible, horrible, no good, very bad day(s)

I’ve had a really rough couple of days…

It all goes back to Friday’s rheumy appointment, I suppose.  My system isn’t sure what to do with the sudden changes in medications.  I’m no longer on Cymbalta, which might be making a difference, as well as the fact that the new stuff I’m on (Tylenol w/codeine & Skelaxin) is strong and the side effects all warn about drowsiness and all that fun stuff.

(I’m rambling and ranting and I’m sorry.)

Monday was alright.  Long and draining, but alright.

Tuesday was mean and nasty.  I didn’t get enough sleep the night before, which doesn’t help anything.  My first class is in a room with 48 (I think) desks in it.  The prof thinks that there used to be a sign over the door that said the capacity was 30.  The table at which I sit is off to the side by the door, but it’s so crammed that there’s no room for my rollator near me.  And everyone has to trip over me and my stuff on their way in and out.  And I end up running into things– desks, chairs, doors, walls… (which adds to the pain)…

I then had an hour long break, during which I trekked to another building for a club meeting, which went fine, I guess.  (But once again, it’s a Normie world… sigh… I don’t want to get into this right now, but it sufficeth me to say that Normies generally only see things from the Normie perspective.)  Oh, and at this meeting I had to sit in the chairs with which the room was furnished, which caused more pain…

Then off to my second class.  In lots of pain, so it’s time for the new, stronger, brain foggier painkillers.  Which meant that of course, I couldn’t think of the words I wanted to coherently answer the professor’s question, even though I knew the answer.  It’s beyond frustrating to not be able to articulate what I know. 

And then, of course, more tripping over and running into things getting in and out of class.  And nearly falling over when I ran into the door frame.

Yeah, by this time I was in true tears.  (My apologies to my professor, in front of whom I have cried multiple times…)  And of course, I had left my laptop adapter at home, so I had to drive back home to get it (instead of doing the reading for my third class of the day).

Of course, I probably would have had time to do the reading after picking up my charger, but I was so unhappy and upset that I made a detour at my LYS (local yarn store, for all you muggles/non-knitters out there) to buy yarn and a circular needle to make scarves.  (Hogwarts house scarves, mind.  A Hufflepuff for my smallish sister, Ravenclaw for me.  And when those are done, I think I’ll make myself a Slytherin as well…)  This brightened my day considerably.  Nothing like new yarn and the prospective of a new project and new, potential-full yarn.

Then off to my last class, where, although I didn’t do the reading, I was able to keep up and answer the questions.  (Except for the in class assignment, about which even the prof wasn’t sure, so I don’t feel bad about that one.)

After that class I went to Panera to meet with some friends to work on the Mayan dictionary.  This went well–we had a lot of fun and learned the names for the parts of the leg.

But I did leave my computer charger there, which contributed to the chaos of today.

Another long day today.  Worked with my second graders this morning.  (And trust me, second grade is NOT NOT NOT for me.)  Then off to class (boring lecture in the library.  I know how to use Boolean operators, thanks, and how to determine if an article is scholarly or not).  Then off to my other class, where I realized I had no charger (but had NO idea where my charger was…).  Which meant, naturally, that my laptop DIED in class, making me unable to do the quick-write or take notes.

Then there was an arts event–Native American art, ethnobotany, and culture.  I only stayed for the 1st half– too much sitting, and homework waiting.

Got home and could not find my charger anywhere.  Burst into tears again (after crying Tuesday night as well).  Ended up calling around and finding it, but now it is 22:15 and I still have two homework assignments to do for tomorrow…

Blah.  It’s a good thing I love linguistics (both of the assignments are for ling classes) or I’d say forget it.

Tomorrow had better be better than Tuesday.  I don’t think I can handle any more hard days this week… I’m liable to become a turtle– crawl into the shell of my bed and never come out ever again.

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)

Off to see the Wizard...

…wherein the Wizard is my rheumetologist.  If I only had working joints…  Anyway.  I went down to see my rheumy today.  He is pleased at my current state in comparison to where I was last year.  I suppose that is true–I have less pain in the everything, but I’m still in significant amounts of pain in my back, and pain in my hips, knees, and hands.  He’s also pleased that I’m still very active, or basically that I haven’t gone into hiding because of the pain.  (Yeah, no, that’s not an option for me.  I’m taking 19 units, working with my 2nd graders 2-3 half days a week, working on the Mayan dictionary project, and will soon be my professor’s research assistant.)  What I do need is pain management so that I can keep doing all of these things!

So we have totally switched up my medications.

Still on:
Lidoderm patches
Ambien
Voltaren Gel

Now on:
Tylenol with Codeine
Skelaxin
Savella

No longer on:
Flexeril
Tramadol
Cymbalta

I still don’t think my rheumy understands that even though I am still doing all the things I’m doing, I’m still in pain.  But I don’t want to go on and on with this.

So after my appointment I raced over to the elementary school for an afternoon with my second graders.  A long, draining afternoon with my second graders.  Second grade isn’t for me.  Fourth grade and fifth grade, yes.  Second, no thank you.

And now I’m sitting on my couch, blogging, reading blogs, watching Disney channel, and knitting my mitts.  NOT reading Guns, Germs, and Steel, not sending out mass emails I ought to, not painting the shirt I promised to have done early summer, etc., etc.

I’m going out to visit my mother tomorrow (my laundry needs to be done) and really ought to get caught up on reading.  Blah.  (Confession: I don’t do assigned reading from textbooks.  I will read all the articles and websites you want.  But I don’t read out of textbooks.  I haven’t.  Since fifth grade, I have not read textbooks.  I remember it well…)  And get some assignments started…

Well this blog is chaotic, fragmented, and practically incoherent.  I’m going to log off now.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

A difficult topic to breach…

Today is World Suicide Awareness Day.  Now I don’t know about you, but I’ve generally found that the topic of suicide is one that is danced around, and talked about more in hushed voices than normal ones.  But it’s the topic of my post today.  And here’s why:

The leading cause of death from fibromyalgia is suicide.

This is not because fibromyalgia patients are depressed (even though chronic pain does frequently cause depression), but because their symptoms are inadequately managed.  The pain is so bad and so constant that death is preferable.

NOW, while I have never really considered suicide myself, I do have a confession to make.  A few days ago I was in a lot of pain and had been lying awake for hours.  I had gone to bed at eleven thirty and was still awake at four in the morning.  I seriously considered getting up to take more painkillers.  “If two make me drowsy, how many will it take for me to fall asleep?”  Please don’t lecture me; I know how dangerous that is, and what a slippery slope it can be.  Immediately after that thought, I stopped myself firmly.  I don’t want to start abusing painkillers, or using them to escape my problems.  I don’t want to be the victim of an accidental overdose, or even make some mental connection that taking painkillers to fall asleep is an acceptable thing.

It may also be said here, though, that I come from a family history of depression.  My grandmother attempted suicide, and, when I was around three or four, my mother seriously began considering and planning a suicide attempt.  I don’t know what I would have done without these two wonderful women.  I am constantly amazed by their strength, to keep living even when they felt so strongly that they didn’t want to.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is:
Arthritis, chronic tendinitis caused by hypermobility, and fibromyalgia

2. I was diagnosed with it in the year:
2009

3. But I had symptoms since:
2001

4. The biggest adjustment I’ve had to make is:
Asking for help.

5. Most people assume:
I wouldn’t presume to know what others assume.

6. The hardest part about mornings are:
Waking up and getting out of bed.

7. My favorite medical TV show is:
House, not that it’s accurate, but it’s amusing.

8. A gadget I couldn’t live without is:
My laptop.

9. The hardest part about nights are:
The insomnia…  The lying awake begging to fall asleep.

10. Each day I take __ pills & vitamins.
Somewhere between 1 and 12 or so.

11. Regarding alternative treatments I:
Love my chiropractor, but wish he was covered by my insurance.

12. If I had to choose between an invisible illness or visible I would choose:
I don’t have to choose.  Some days I am visible (crutches/rollator) and some days I am invisible.

13. Regarding working and career:
I’m a full time and then some student also doing part-time student teaching and have recently been offered two student research assistant positions!  I’m accepting both and will make it through because school is a physically passive venture, as is being a research assistant.  The student teaching is hard, though, and I wonder how I’ll ever manage to become a full time teacher.

14. People would be surprised to know:
How little I can actually do for myself and my home.

15. The hardest thing to accept about my new reality has been:
All of the changes that I have to make in my life.  That this me is not the same me I was.

16. Something I never thought I could do with my illness that I did was:
Fly to Florida over the summer for a conference.

17. The commercials about my illness:
Are dumb.  A person with true fibromyalgia, even on meds, could not stand all day at a bakery.  Meds do not suddenly make you a typical person.  They just help you (hopefully) manage most of the symptoms most of the time.

18. Something I really miss doing since I was diagnosed is:
Going to any social event, really.  And ballroom dancing…  and sleeping.   I miss sleeping…

19. It was really hard to have to give up:
My hobbies of dancing and playing the piano, as well as cross-stitch…

20. A hobby I have taken up since my diagnosis is:
Knitting.  It keeps my hands busy, and is easier on them than cross-stitch.

21. If I could have one day of feeling normal again I would:
I don’t know, and I don’t really want to think about it, because it would just remind me more of how much I’ve lost.

22. My illness has taught me:
How to ask for help.  that I’m not perfect and don’t have to be.

23. Want to know a secret? One thing people say that gets under my skin is:
When they compare what I’m going through to their badly sprained ankle, etc.  Please don’t think you know what I’m going through.  You don’t.

24. But I love it when people:
Offer to help and do simple things like hold open a door.

25. My favorite motto, scripture, quote that gets me through tough times is:
“The Son of God suffered unto death, not that men might not suffer, but that their sufferings might be like His.”  –George MacDonald.
“And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infimities.”– Alma 7:12 (from the Book of Mormon)
Christ has felt my pain and my sorrow and knows what I am going through, and he is there for me, to comfort me and lift me up.

26. When someone is diagnosed I’d like to tell them:
You’re not alone.  There is a whole community of individuals with invisible illnesses out there, as well as people who truly love you and care for you.  Even on the days when you feel alone, you’re not, because Christ is still there for you.

27. Something that has surprised me about living with an illness is:
How many other people live with chronic illnesses.  It wasn’t something I was really aware of until I became a person with a chronic illness.

28. The nicest thing someone did for me when I wasn’t feeling well was:
I am so thankful for the women from my church who have brought in meals and cleaned my house for me.

29. I’m involved with Invisible Illness Week because:
The world needs to be aware of how many people suffer in silence.  They need help and understanding.

30. The fact that you read this list makes me feel:
Thankful.  Because maybe now you’re a little more aware, and can be more understanding of others you meet with invisible illnesses.

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)

A long, painful, and tearful day

Today was just “one of those days.”

I stayed over at my parent’s house last night.  My little sis was teaching the kindergarten age Sunday school class, and I was going to go and lend a hand.  But I didn’t sleep well or much last night.  I was totally worn out and hurting from playing with my niece and attending a worship service, but I didn’t sleep more than five or so hours.  Woke up very stiff and hurting.  Helped my sis with squirmy little five-year-olds.  Then went to the worship service.  Then to the woman’s meeting, and the topic made me cry. (Service.  Doing for those who can’t do for themselves.  Like me.)  Oh, and having to tell my diagnoses a dozen more times.  And all the sitting, both for church and the drive from my parents took me up a few more notches on the pain scale.

I came home and took a few minutes and just sobbed.  Sobbed for the things I can no longer do for myself.  Sobbed because I don’t like asking for help, or even needing help.  Sobbed because I’m losing my independence.  Sobbed because I can’t even look after my niece for a few hours, let alone having children of my own.  Sobbed because I purchased a rollator online today, a step I’m not sure I’m emotionally ready for, but desperately need physically for school.  Sobbed because I don’t know if I’ll even be able to finish school, let alone have a career.  Sobbed because my doggie may have to be put down soon.  (I’m even crying as I type this.)  Sobbed because my husband doesn’t attend worship service with me any more.  Sobbed because of the pain I’m in and the lack of relief from painkillers that just make my brain fuzzy.  Sobbed for friends lost.  Sobbed because other friends are going to an amusement park tomorrow and my body won’t let me.  Sobbed because this is not the life I thought I would be living.  Sobbed because of the burden I place on my husband and family.

Now it probably didn’t help that it’s “that time of the month,” that I hadn’t really eaten in hours, that I was exhausted, that I was in pain, that I was medicated, or that I was withdrawing from another medication that I forgot to take with me to my parent’s house last night.

But I’m really ready to curl up in bed, turn on a brainless feelgood movie, and fall asleep.  I’ll face the world tomorrow, but for tonight I’m done.

(P.S.  I would just like to say how dear and kind my husband was to me today.  Not that he isn’t every day, but I needed it even more than usual today.  He supported me getting a rollator even though our finances aren’t fantastic.  He let me cry on his shoulder about my doggie.  And he told me he loved me.  And held me.  I really don’t know what I would do without him.)

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

Mornings

Originally written for and posted on WeAreFibro.org

“Mornings”

Roll over in bed and look at the clock.
Dang it, I’m late!  Yeah, again, not a shock.

Didn’t sleep well last night.  How many days is this now?
I’m too tired to think, but I’ve got to get up somehow.

Try to get out of bed, tripping on homework as I go.
Of course, it’s not finished, but what else is new, you know?

Get ready for the day, cursing the pain.
Can’t find my shoes; my apartment’s a shame.

Hobble to the car, forgetting half of my stuff.
Off to another day with a brain full of fluff.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

It’s a Normie World (pt. 1 of many)

We shan’t debate here how the world was created, but the Normie built it.  (Normie– a person who isn’t a Spoonie.  Simple enough, yes?)  And when the Normie built the world, they did not think about the Spoonie.  Sure, the lovely Americans with Disabilities Act and other such legislation has brought the Spoonie’s needs to THE Normie’s attention, but  A Normie can never understand what it is really like to be a Spoonie until he has been a Spoonie himself.

Are you a Normie who has graced my blog with your presence?  Next time you’re out somewhere, stop thinking about yourself for a moment (everyone does, it’s ok) and think about the place you’re in.  Imagine you rely on a wheelchair.  Or crutches.  That makes you a Spoonie who’s at least lucky enough to get out of the house.  Now–how does your new imaginary mobility aid impact your life?

Let’s look at my outing today, shall we?

Today we (hubby & I) went to the bookstore at my university to buy textbooks.  I praise my university because there are power switches on the majority of the doors, at least the ones to enter buildings.  It doesn’t have them on all the classroom doors, though.  Time to turn on your imagination again.  Let’s pretend that there weren’t power doors.  I am a forearm crutch user.  Doors on college campuses are, in general, heavy.  Now, pushing on a door is easier.  I unlatch it so it’s cracked open, then turn around and back through it, so that my whole body weight is used  to open the door.

Pull doors are much more difficult.  I have to get the door open, wedge it open with my crutch, and then try to keep the door open while both my hands are trying to use my crutches to help me walk through the door.  Not easy.  Not really even possible.  I praise the inventor of the power door.

Now we’re in the bookstore.  I have a lean build, but then add crutches and I need three feet of space to walk through.  Piles of books and boxes in aisles do not help me.  I’m likely enough to fall on my own as it is.  Fork, that’s part of the reason I use the crutches!  Getting my crutches tangled up is frustrating and painful.  And it takes even more effort walking around trying to find a more accessible route.  And a wheelchair would not have fit down the aisle.  Many walkers and rollators would have the same issue.

And with crutches, your hands are occupied.  You can’t carry things, like, say, a stack of textbooks, or a basket, etc.  Crutch users wear backpacks.  They stay out of the way of the crutch and keep the weight balanced.  But stores generally frown upon shoppers putting unpaid merchandise in their backpack.  Yes, I had my husband with me.  In fact,that’s the reason I took my husband with me.

The bookstore list came out this morning.  I raced to the bookstore today partially to get as many books used as possible, and partially to avoid lines.  Part of the reason for using a mobility aid is because I can’t stand for long periods of time.  Standing causes pain and muscle fatigue… standing in line for an hour to pay for books could well mean bed-rest for the rest of the week.

Fellow Spoonies, I’m sure you commiserate, and even have your own horror stories to tell.
Normies, I challenge you to try once in a while to look at the world from a Spoonie point of view.

As you may have noticed, this post says “part 1 of many.”  I plan on writing several other posts to this effect, about grocery shopping, school, the park, the doctor’s office, my apartment complex…

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)

Good Day vs. Bad Day

The following are poems (of a sort) that I originally wrote for and posted on wearefibro.org.  The challenge was to create one piece that described a good day with fibromyalgia and one that described a bad day.

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GOOD DAY
Some days I hear the poetry of the flowers.
I see rainbows no one else can see.
Some days I dance with the children.
I sing with the bird’s melodies.
On days when I see the sunshine
breaking through clouds of pain…
These are the days that I cherish,
The days that help me remain.
Some days I laugh with the echoes.
I climb trees and talk with the leaves.
Some days I taste the sweetness of spring.
I let my soul drift along with the breeze.
On days when instead of the thunder,
Music resounds in my ears…
These are the days that I cherish,
The days that I hold through the years.
Some days I dust off my wishes.
I pull down my dreams from the shelf.
Some days I dare to be hopeful
That I will have more days of health.
On days when there’s peace in my spirit
Where turmoil so often resides…
These are the days that I cherish,
The days that I carry inside.

Ƹ̵̡Ӝ̵̨̄Ʒ

BAD DAY

I am a shadow.  A ghost.  Hardly a wisp of who I was.  Alone in the darkness of my mind I ponder the past.  My dreams.  My passions.  Slaughtered by a monster.  The Unseen.  This beast that has hold of my life.  The one who fills my days with torture.  With pain.  Each one a struggle to survive.  As tears roll down my cheeks I wonder.  I question.  I beg.  But no one listens.  No one comes.  No one rescues.  Each day I battle.  I struggle.  I fight.  But I’m only farther from winning than where I started.  And I slip farther.  Deeper.  Faster.  Into the darkness of my mind.  Into the clutches of the monster.

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

What happened to you?!

I’m getting rather tired of this question, having answered it over a dozen times in the past two days.  People are just now noticing that something’s wrong with me because of my crutches.  I’m thinking of making cards that say, “I have taken a vow of silence.  Please visit my blog at http://ruminarispoonie.wordpress.com.”

The short answer that most people get is “arthritis, chronic tendinitis, and fibromyalgia” but I’m thinking of mixing it up with things from this list. If you have other creative ideas, please leave them as comments below.  Or creative responses to “how are you?” or “how are you feeling today?”  Those would be graciously accepted as well.

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On another note, I’m really not satisfied with my current level of pain management.  Halfway through the worship service today, I stepped out to take the max dose of painkillers (tramadol, in case you’re curious).  I was then counting down for four hours to pass so that I could take another dose.  Three hours after that second dose, I was wishing I could take more painkillers, but I only get two doses a day.

I’m also not satisfied with how they bring pain from, oh, say a 7 or 8 to a 5 or 6.  I’d really like it to come down to a 3 or less… is that asking too much?

(Originally posted on another of my blogs: http://ruminarispoonie.wordpress.com)

A look into the past...

Greetings.

This website is a new one because, at present, my feelings about my life as a person with a disability are spread across a number of message boards (see the links on the right) and I needed one central location to keep my thoughts.  And here it is!

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I look like a fairly typical individual.  Female, on the tallish side, curly brown hair, hazel eyes…    Get to know me and you’ll find out that my mind is my best feature.  Not to brag (much), but I’m intelligent, witty, and creative.  I’m married to a wonderful man.  I love to sing, read, and daydream.

And I have an invisible physical disability.  The invisible part means that you can’t see it.  Maybe you can see my cane or crutches, but I have no broken limbs, no bandaged wounds.  The physical disability part means that I am in pain, somewhere, almost all the time.

It started back in high school.  I was fifteen years old and had recently gone through a massive growth spurt which changed me from looking like an eleven year old into a curvy young woman.  That growth spurt wreaked havoc on my knees, which didn’t know what to do about getting tall so fast and suddenly having hips.  The doctors diagnosed it as patellofemoral syndrome, gave me knee braces, and sent me to physical therapy.  Now, most people who get patellofemoral syndrome “grow out of it” so to speak and never have problems with it again.  In this instance, I do not like being the exception to the rule.  My knee pain is still present and bothersome.

Then I graduated from high school and started college, and hip pain became my new companion.  I blamed the hip pain on the way I walked, etc., trying to be nice to my knees.  It wasn’t fun, but I dealt with and never went to the doctor about it.

In July of 2008 (about a year ago from this posting), I started having hand pain and back pain in addition to the knee and hip pain.  I would wake up every morning very stiff, and then couldn’t do things I used to because of the pain: Make a peanut butter and jelly sandwich.  Go grocery shopping.  Play the piano.  Vacuum.  Write.  and many, many more.

I went to my GP and was put through a whole set of tests with poking and bending and blood work and was told that I didn’t have rheumatoid arthritis, and I didn’t have lupus, and I wasn’t anemic, etc., etc., and they suspected that I had fibromyalgia and sent me to a rheumatologist.

Well, dozens of x-rays, many vials of blood, and two hours in an MRI machine later, the rheumatologist suspects that I have general hypermobility syndrome that causes tendonitis in my joints, degenerative disc disease/arthritis in the lumbar region of my spine, and fibromyalgia.  (I’m not completely convinced about these diagnoses… but that’s another post and shall be written another time.)

I have now tried the following pain killers: Vicodin.  Massive doses of Advil.  Mobic.  Ultram/Tramadol.  Lidocaine.  Other NSAIDs.

Plus muscle relaxers, antibiotics, sleeping pills, and Cymbalta.

Tramadol takes the edge off the pain.  Sometimes.  But it’s really not working as well as I want it to.

Cymbalta has just been a mess of side effects.  Weight loss.  Insomnia.

I’m tired of being in pain.  I use crutches most days to get around.  I feel unsteady on my feet.  I have massive spasms in my back that feel like lightning traveling on my spine.  Other muscles spasm randomly.  Or twitch.  I have stiffness in all my joints, and pain in my hips, knees, hands, and back, and occasionally other joints.  I’m not sure I want to know what the medications I’m on are doing to my body.  I’m tired, but the insomnia keeps me from falling asleep and sleeping well.  I’m having to adapt my whole life, including how I do grocery shopping, the way I take classes at school, how I sleep,… all of it.

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Well, now you have heard the very condensed version of my life… or at least the past year.  If I haven’t bored you to tears already, I invite you to join me on my journey as I seek to discover who I am now and how to live the life of a person with a disability.

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)