Gravity Wars
I lost a battle with gravity yesterday. Big loss. Gravity wiped the floor with me. Literally.
I was walking from my car to my apartment. Between said car and apartment is a curb, a down-hill and angled piece of sidewalk, and then a large area of concrete. While going down the angled little sidewalk, my rollator went off the sidewalk, got its wheel wedged in the angle between the sidewalk and concrete, and over it went. We went. I actually ended up falling over the rollator.
I have a giant bruise on the back of my right thigh (from the handle of the rollator, I think), a sizable bruise on my left shin (from the top bar of the rollator, I think), unhappy wrists and elbows from breaking my fall, and general pain everywhere.
Ow… ow… ow…
Last night, as my body was realizing just what had happened to it, I decided that going to school was probably not the best idea. I’m having a hard(er time than normal) walking because of the mega bruise on my thigh and the extra pain from the fall, and with the joints in my arms being unhappy, it’s hard to use my rollator and crutches. So I sent my professor an email letting her know that it was highly likely that I wasn’t going to be in class today (I mentioned that I had fallen, left out the part about going rump over rollator). I’m glad I made that decision because then I didn’t have to wake up early to take my husband to work, especially since I got an email from that professor this morning saying that class was canceled (a word I always want to spell with two L’s)! So I’m happy that I didn’t missing anything.
Well, that’s my latest adventure…
Since then…
Hmmm… well, it’s certainly been a while, hasn’t it? That’s an understatement… my last post was in September!!! Sigh… It’s not that I haven’t been blogging. To the contrary. I’ve just been blogging elsewhere. That is a link to my other blog, where I’ve been posting about once a week/every two weeks since November.
But I don’t talk about my health there. Why? Mmmm… my mother and sisters read that blog. And I keep a lot of stuff from them. A lot of stuff. Stuff that I haven’t even mentioned here or on BYDLS… or anywhere else. But that I really ought to, in part just to confess about it to myself. And my mother and sisters aren’t the only ones–my Facebook friends all have access to that blog, and a lot of them just don’t know what’s going on, since most of them are high school or community college friends that I knew before I got sick. And I don’t want to deal with those questions. Not on such an open forum. It’s awkward, and I do it often enough in real life that I don’t want to have to do it in cyberspace as well. And I hate all the pity.
But it’s time for an update. Since my last post I have:
- finished the semester that I had just started. Decent grades- 5 A’s and 1 B. And I managed to successfully complete my student teaching (ish) assignment.
- started a new semester 18 units of almost total happiness. Geography is dumb, but I’m also taking Borders & Regions (which has a fantastic reading list), and Survey of Native American Languages. Plus three independent study classes: Cognitive Ling (with my favourite professor ever), TA-ing (for my favourite professor ever), and finally getting credit for the dictionary project on which I have been working for over a year now. I will be graduating at the end of this semester! How EXCITING IS THAT!?!?!
- been encouraged to submit a proposal to speak at a conference. I’m elated that my professor thinks so highly of me, totally intimidated by the fact that I would be presenting in front of people who have been studying linguistics longer than I’ve been alive, and apprehensive because I never know how I’m going to feel from one day to the next.
- changed my meds again- I’m no longer on Savella. I was sick of being nauseous. I’ve been nauseous since October, and I’m done. I’ve lost a noticeable amount of weight because of it, and I wasn’t noticing any benefit.
- continued working/fighting with my rheumy. Why is it that I can never seem to articulate/remember everything I want to say when I go in for an appointment?
- finished knitting that scarf for my little sister and decided not to make one for myself. It was a lot of work!!! But I have started socks! I love knitting socks! Now, if I could just manage to finish a pair… And I have frogged the mitts I was knitting.
- landed in a dismal financial situation, but I’d rather not get into that right now. But we may end up moving in with my sister-in-law and her family; it would help us all out financially, but is liable to be a huge spoon drain.
But I think that makes for a sufficiently long posting for now. I will be back–sooner rather than later–to give a more comprehensive update, and perhaps, if I’m feeling brave, make some of those confessions I mentioned.
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.
Can you see me now?
This week is very important–it’s National Invisible Chronic Illness Awareness Week. Nearly half of all Americans have a chronic condition. And I am among them. I live my life with chronic pain that no one can see, except on days when I use crutches or my rollator. But people still look at me, wondering why I need these devices. Many people assume I’ve been in a car accident or had some other injury, but I haven’t. Something else is going on with my body. Right now they call it fibromyalgia, but I’m not sold on that diagnosis. And right now, none of my treatments are helping.
While this week is about invisible illnesses, I would like to focus this post on having a visible illness (because of mobility aids) and yet being invisible.
I was at a meeting for the student chapter of my local teachers’ association, and we had been moving around doing a get-to-know-you activity and on my way back to my chair, I fell. Completely. Me, hands and knees, on the ground, because gravity decided to affect me extra strongly at that moment.
And the only person who asked (eventually) if I was ok was the boy I had walked in with who shares a class with me. No one else. No one offered a hand up, asked if I was alright, nothing. What’s more, when they noticed that I had fallen, they looked away. Maybe they didn’t want to be the first one to offer help. Maybe they didn’t want to call attention to my disability and my fall. Maybe they were embarrassed by me. But I was there, on the floor, invisible to the two dozen other people in the small room. (Two dozen future teachers, which concerns me.)
So, in a way, every person with a disability is invisible, whether their disability is completely invisible and they are discriminated because they don’t look sick, or because their disability is visible, and the world doesn’t know to react to such a difference.
So, can you see me now?
I’d rather be knitting…
I don’t know which is worse– the fact that I’d rather be knitting than doing my homework, or the fact that I’m blogging about how I’d rather be knitting than doing my homework. (Hmmm… definitely the blogging…)
Let’s think, though. A hundred fifty pages of Guns, Germs, and Steel and The Ebonics Nation or happily knit-purl-ing away to a happy movie. This doesn’t seem like a complicated question in terms of what would make me happy now, but as for how happy I will be at 11:30 as I’m skimming the books trying to invent something for my mandatory online posting… not so much. Sigh…
But I’m very happy with my Hedgerow Mitts at the moment. I’ve finished the cuff and have started on the arm and you can see the subtle pattern coming through. My hands aren’t too happy, though. I knitted for two hours today while in church, and I think I may have reached their limit. (Insert more sighing.)
May I mention how frustrating it is to have my life controlled by Pain? I’m tired of “being told what to do” with no way to disobey orders. It seems like a loss of liberty. I am a prisoner in this body.
Knitting makes the world go round…
And when you drop a stitch, the whole world comes to a screeching halt.
I was working on my Hedgerow Mitts today and dropped a stitch. Sigh… ok… no biggie. I pause the movie I’m watching so that I can concentrate. I’m still a knovice knitter, so I do need to concentrate when I drop a stitch. Well, I get it almost fixed, and then I realize that it has actually dropped stitches several rows down and next to that stitch. AAAAHHH! Of course, at that very moment, my hubby gets home and comes in to greet me enthusiastically and tickle my toes. NOT HELPFUL! (Sweet, but not helpful.)
It took me and my crochet hook several minutes to get all the stitches the way they needed to be, but they did come out the right way. I think. We’ll see if I goofed up the pattern.
My husband then came up to see what I was doing and asked why I was making fingerless gloves. I explained to him that in class, my hands get cold, but I still need to have my fingers free to use the touch mouse pad. His response “so why don’t you just cut the fingers off a pair of gloves?” “Because the ends would fray.” “You can buy gloves without fingers.” “It’s more fun to knit them, Muggle.” (Muggle: some one who doesn’t understand the magic of knitting.) He laughed, rolled his eyes, and went to go play video games. That’s fine. I don’t understand why he would want to play video games; he doesn’t understand why I would want to knit. S’all good.
9-11: Remembering Sean Booker
Eight years ago, tragedy struck the United States, and two thousand, nine hundred ninety-six souls were lost. Two thousand, nine hundred ninety-six fathers and mothers, sons and daughters, brothers and sisters, husbands and wives, friends and neighbours.
Among those two thousand, nine hundred ninety-six was thirty-five-year-old Sean Booker. Sean worked on the 93rd floor of WTC tower one for Xerox, and was also an ordained minister with a congregation in Newark.
When Sean’s life was stolen, he left behind his wife, Sharon, then five-year-old Sean, Jr., and three-year-old twins Denzel and Danielle. His children, now twelve, ten, and ten, never had their daddy take them to their first day of school. He was not there for his son’s first game. He won’t be there to give Danielle’s first boyfriend a lecture on how special his daughter is, or years later to walk her down the aisle and give her away. He won’t be the one to teach his children how to drive. He won’t be there to watch his children graduate from high school or drop them off at their first college. He won’t be there to see his grandchildren born.
Sean is one among the two thousand, nine hundred ninety-six whose lives were cut so short by acts of hatred and terrorism. Because of the lives Sean and the other two thousand, nine hundred and ninety-five left behind, we must always remember and never forget.
May God Bless America
and the families of the victims of 9-11
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.
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.
Me Versus the Pain 