…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.
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 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.
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.
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
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.
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.
I’m back to school today, and while this will probably not be the only post for today, this is still something I want to discuss.
How many times in your day do you hear the following conversation, almost word for word:
Hi.
Hi. How are you?
Fine. You?
Fine.
You rarely ever hear one that goes:
Hi.
Hi. How are you?
Oh, totally miserable. I’m in so much pain today, and I forgot my lunch, which means I can’t take my medication, which means that I’m going to start going through withdrawal…
Too much information, right? No one wants to hear it. “How are you” is merely an extended greeting. It’s not really intended to inquire after your well-being. In fact, if it actually is used to ask about how you’re feeling, the conversation generally goes thusly:
Hi.
Hi.
How are you?
Fine.
No, really. How are you?
Yup. It has to be clarified that the asker actually wants you to reply honestly.
So why did I bring this up? As previously stated, it’s my first day back at school. At least five times, I have had people pass me saying, “Hey, how are you?” as they keep walking. They don’t even stick around long enough to hear “fine,” much less a truthful response.
So, dear reader, let this be a bug in your brain. Think about how often in your day you ask “how are you” or “what’s up” or “how’ve you been” or other such questions. Are you following custom, or are you truly asking? Does the answer respond with “fine,” “good,” “well,” or some other programed retort, or does he actually articulate his state of existence?
To close, the following XKCD webcomic was published a while ago, but is exceedingly appropriate:
- “But surely I owe you an accurate answer!”
BAH! So we’ve recently (like, last two weeks) paid for textbooks, and my new rollator, and more textbooks… and now I have to buy a laptop battery.
Today my laptop says that it is plugged in but not charging. Of course, my warranty has expired. I called Dell and they ran me through some things, and they have thus decreed that the battery is dead.
After several screams in frustration and some creative cursing, I called my folks. My dad and I looked online and found batteries cheaper then Dell wants to sell me, by more than half. My darling husband didn’t freak about needing a new battery, especially since it’s less than $100.
It’s just not something we need right now.
