Archive for personal
Is it really fibromyalgia?
As I sit here, sick for the third time since November, I wonder if it’s really fibromyalgia I have. Could it be something else? This time it’s strep. I didn’t know that adults really got that, but I guess I have. It has been less than three weeks since I was sick with a pretty severe sinus infection. I woke yesterday alone in my apartment with a fever of 104. I was delirious. Luckily I was coherent enough to send a text out asking for help, which arrived. It’s such a strange feeling, having a fever that high. Everything feels like it’s in slow motion, and my hearing and speech were much different. I just don’t understand… I never used to get sick, and now it seems like I constantly have something. No fun. Anyone else with fibromyalgia get sick this often?
Life in the Fast Lane
I can’t believe it’s been almost two weeks since I’ve posted. Thanks so much for everyone who has been supportive in this journey. I spoke with my insurance, and I was denied for Lyrica, so I am trying something new called gabapentin (Neurontin). It’s actually a seizure medication, but the upside is if it does end up working, I will be able to afford it for the few month where there will be a lapse between old- and new- insurance coverage. Cool. I just hope it works.
The pain has been pretty bad with the lapse in medication. I had forgotten just how bad it could get. I think it is the worst sitting all day at my desk, staring at the computer screen. I am very grateful to have a job where I don’t have to be on my feet, but my neck really bothers me most days at work.
I got to have a little time off from kids this week, thanks to the kindness of some very wonderful people. Lynn, who allowed the kids to do an art class for free at her shop; Ryan and Jamie, who let them come hang out at their house so I could get some things done; and Karen, who let the kids stay over last night. I have been spoiled with kindness ths week. These people are truly awesome.
It won’t be too long before it’s back to school time, though. I am a little worried about the costs associated with that–school fees, clothes, supplies, lunch money… we’ll see. To those of you with kids, how do you do it?
The Amazing Fibro Aunt
Yesterday, if you hadn’t heard, I finished my first week at a new job. Hopefully that will mean no more privileged, insensitive, ableist comments from bosses, at least for a little while. I’m really enjoying the new job thus far. I’m not just doing data entry all day and I’m gaining trust from my colleagues to undertake projects on the basis of my competence, not my age or the fact that I have not completed my degree.
One of the most difficult things I’m dealing with right now though is trying to raise my partner’s nieces and nephews that I mentioned previously. Don’t get me wrong, it’s immensely rewarding, but at the same time some times I feel like I’m crashing and burning. We had negotiated a bed time of 11:00 for the kids because it is summer, but my new job starts earlier and I have to be up by 6:30. My partner isn’t home in the evening, and I can never get them in bed with the lights out before 11:30. That puts me at 7 hours if I’m lucky. Usually though I don’t get to bed before midnight. Those of you with fibromyalgia or chronic fatigue probably know that that amount of sleep is not enough. In fact, it’s nowhere near enough. I’m subsisting on Redline energy drinks to keep me conscious until 11:30, which is making me incredibly nauseous all the time. Thursday, my partner’s day off, instead of keeping with my usual Thursday plans I was so beat that I just lay down in bed when I got home and slept.
Did I mention I’m out of Lyrica again and the insurance has decided that they’re not going to cover it? Because it’s not a “necessity”, so I probably will not be taking it anymore. It’s far too expensive without insurance. I hate insurance companies.
Trying to relate to the kids has been a trip, too. When they get angry, they lash out in ways that I haven’t figured out how to deal with. They say things they don’t mean and react violently (hitting each other, etc). Sometimes I just don’t know how to respond. I know it has a lot to do with things they’ve observed from others, but it’s just so hard sometimes. I have to say, for those of you who have kids, I have a much greater admiration. Raising kids is no easy feat.
Hope everyone is having a great summer.
Anniversaries and Racecar Beds
Well, Tuesday officially marked the four month anniversary of this blog. If you want to buy me something nice to celebrate, I accept all major credit cards, good red wines (bonus points for sparkling wines), and deep tissue massages. All jokes aside, I’m glad to be writing this and want to thank those of you who read this blog.
This week has been hectic. I wanted to have written Tuesday, but I have been so busy. To make a long story short, I now have four children ages 5 through 14 living in my house, my partner’s nieces and nephews. I got a call on Wednesday saying that we (my partner and I) were going to go pick up the kids because their mother was about to be evicted from her apartment and she couldn’t afford to feed the kids anymore–my partner and I had bought groceries and brought them over several times in the preceding weeks.
My head was spinning as I got off the phone, wondering where we were going to put all these kids. We had one “bed” in the house–ours, a mattress on the floor, and that certainly wasn’t going to hold six people. My mind was reeling when I got home, so I went on a search for bedding. By some miracle, we found enough. I found a mattress and box springs in my attic for one, my father brought over another, an extra from his house, we found a toddler size racecar bed in the garage, and an inflatable mattress to suffice until another actual bed can be brought over. We found three sets of sheets (we had to buy a set for the racecar bed), four comforters (including two that I had made myself!) and four pillows.
Setting it all up proved to be difficult though. Stairs, as you probably know if you read this blog, are my arch nemesis. I climbed the flight in our house way more than I wanted to that day, trying to get everything set up and ready. The room looks really cute though… my Ultram and I are just going to be BFF for a couple days while I recover from too much strain.
Thanks for your patience with me while I try to get settled into all of this. I appreciate your continued reading. By the way, I added a cool little widget so that if you don’t use an RSS reader that you can be e-mailed when I update this blog. It’s up at the top, sort of on the right side, so be sure to fill in your e-mail so you can know when I write a new blog. Otherwise, add me to your RSS reader and I promise I’ll start writing interesting things again soon. TGIF!
Some Spoken Word…
“What’s wrong with you?” she says smirking
stoic staring
watching my broken body
slowly climbing eight cement steps
my own personal mountain
letting the heavy wooden door
slam in my face–
at my refusal to answer
“You’re too young to use a cane” he says
unfamiliar, uninvited
looking me up and down
as if assessing the damage
And I’m tired
of inaccessible buildings
nonworking elevators
and walking to
the furthest side of the building
to find the ramp.
But mostly I am tired
of you.
Of your adolescent curiosity
as you try to place me into categories
that don’t fit
Of not using the tools I need
because I can’t deal with
one more rude question
one more rude question
one more fucking rude question
posed by
you, southern sticky sweet
nice girl
concerned girl
cultured girl
charity-lovin’ débutante
but hey, your father’s brother’s mother’s
second cousin twice removed has a neighbor
who has one of those “cripple” kids
so you must really get it
But before you give me one more
tokenizing, stigmatizing
self-satisfying query
please
mind your own
mind your own
mind your own
fucking
business.
__
We did a spoken word workshop for my college poetry class. Spoken word is certainly not my forte in the world of poetry. For me, this was the result. Just thought I would share for those who are tired of explaining. Happy Monday.
Last thoughts on a school year
As I am finishing up my second year of college and preparing to transfer, I am left with a lot of mixed feelings. This last year and a half has been the most difficult for me health-wise as I’ve observed the deteriorating of muscles and tendons, of my mental clarity, and of my general sense of wellbeing. People ask me frequently what it’s like to be in pain all the time, and honestly it still baffles me. It baffles me that though I have gotten used to feeling this way, physically, I’m still not used to all the repercussions.
I have virtually lost my ability to do some of the things I was once able to do, such as climbing stairs by myself. In the event that I have to climb up or down more than two or three, I have to have someone to lean on, to balance most of my weight on, because the muscles in my legs get tight and spasm. As many who are disabled probably know by now, having to rely on others puts a person in a very vulnerable position. For me, a former significant other would hold this over my head, would shame me, would complain about how much of a burden my disability was on her.
This idea of the burdensome disabled person is not unique to relationships I’ve had, however. It’s something I have, if you’ve read my posted e-mail from disability services, felt from my school as well. It seems to be a common trend among students to be othered by their schools’ disability services offices, to be treated as if the students’ needs for accommodations are unreasonable or unwarranted or untrue or giving some sort of unfair advantage to the disabled student. Indeed my school’s inability to accommodate me, or to listen to my grievances when I’m not being accommodated, is one of the main reasons why I’m leaving–well, and then there’s the blatant classism, but that’s a story for a different post perhaps.
Any school, however, that that has demonstrated to me that it is going to allow their administrative officials say things that are insensitive and disrespectful to ability, class, race, sexual orientation, gender identity, belief, country of origin, or any other way a person identifies or is marked without repercussions is surely not getting my money next year. I’ll take my butt somewhere else, thanks!
On a personal note…
I have taken a total of almost five hours worth of naps today. I don’t know how I’m going to make it through this week to spring break. There is so much to do and I have so little energy. I slept all weekend on top of this. I have two major papers due in two days. I’ve started one. I just can’t pull all-nighters like I used to be able to.
