Saturday, May 31, 2008

Field Day

My son had been looking forward to Field Day at school for several weeks, but when I came home, he looked disappointed and teary. He said nothing was wrong (maybe because his grandma arrived with me), but my husband later told me that the kids had been matched to partners, and that my son's partner refused to participate in any of the activities and just walked around. My son is a follower rather than a leader (autism issues), so he had no choice but to go along with this all day. Except for with his sister, he will not argue with others at all. Where were all the teachers, what were they doing? I have volunteered in previous years but obviously could not this year.

He has been getting blamed at school for problems in which other students are instigators, but he won't speak up on his own behalf. We hear the whole story at home later. He gets a "mark" for not having supplies when someone else has just stolen his pencils and still has them in his hand. He gets in trouble for not turning over his assignment folder to a kid who demands it, even though that kid isn't the one assigned to check assignment folders. In neither case will my son speak up on his own behalf. It actually does not occur to him to do so. The teachers know he has issues, so refuse to see that other kids are doing the same thing (drawings instead of multiplication), partly because they know how to hide it. I've never known him to draw on his own, to have his own idea for a drawing. I believe one of the evaluators was in his class on the day when that occurred, so I look forward to her perspective.

I'm ready for this school year to be over. I always hope for a better start the next year, and issues have become easier since he's had better teachers this year. I don't know what it's been about this semester, though, other than that all the 2nd grade teachers are absent all of the time (two for reasons that cannot be helped).

I feel like an inadvertent Eeyore lately. The health/family issues are on my mind even as there is a lot to celebrate. A phone call from a cousin whom I'd lost touch with for four years, the looming of summer, increasing ability to get around that everyone around me is noticing (my mom said I almost bounced onto the couch yesterday). Have watched more movies with husband in the past couple of weeks now that I'm able to sit more propped up than we'd watched in the past few years, including:
Lars and the Real Woman
Feast of Love
Cashback
Enchanted
Mr. Woodcock (disclaimer: disability/fitness issues at stake, don't laugh at me, it was way better than the other movie that was on)
Scoop
Becoming Jane
Dan in Real Life
and a few reruns of Friends and Seinfeld

When It Rains, No Pain Medicine

Stomach virus with headache or godawful migraine, can't tell which. Everything impedes intelligent activity. Got home from PT yesterday at 5 very tired and in pain (they had me doing a lot more), went to sleep at 7 and slept for 14 hours, then got sick fast while husband was doing yardwork. Tell me how the same kid who can help me take my blood pressure and find the thermometer, turn down the air conditioning, cover me with a blanket and bring an additional pillow, look for a Coke to try to settle my stomach, warm up leftovers for lunch for herself and make a sandwich with chips for her brother, then want to sit with me to keep me company, cannot stop fighting with her brother over the Wii or television when the noise makes her parent hurl.

Being sick at stomach not so good with neck brace, nor does having a bad headache work very well when pain medicine won't stay down. Friend brought over chicken stew tonight, perfect for protein later.

I hate being so thirsty yet being too sick to drink anything. Liquids!!

Thursday, May 29, 2008

New Achievements, No Yoga

So some people gather awards at work, write new books, reorganize companies. Meh. I have new accomplishments I'd like to brag about too. I can sleep on my side now with a cervical pillow wedged under me (though I'm stuck there all night) on top of the other wedges. I can also dress myself (though I still need some help with some of the routine). I caught up with a lot of correspondence/written work yesterday instead of staring at the computer screen wishing I could type more (though I had greatly increased pain from doing that). It's often two steps forward, one step back, but that's still progress.

I still have problems lying down flat. Won't bend that way, or can't do anything but hold my breath and try not to yell when I do. The PT didn't even try to have me lie down yesterday. It was a relief he recognized that too.

I sleep so much, especially after my pain level declines after a severe high (last night). I'm exasperated with my fatigue, though it's improved a lot. I need to get more done. Just glad to see many signs of improvement and much more independence.

My apologies that my blog reads more like a diary than commentary on significant events these days. The daily changes have been a lot to process, mentally and physically, though I'm glad to be feeling more like myself each day. I have a lot of mental responses to issues such as the kindergarten autism incident, but not enough mental energy to compose something as thoughtful as I should.

I did get an email from a friend yesterday asking if I'd tried yoga, acupuncture, etc, and I just looked at the email with horror. She jokingly referred to it as voodoo, though, so I think she meant as a just in case measure rather than "instead of" Western medicine. Yes, I use multiple modalities. But no yoga!

Wednesday, May 28, 2008

Access and Ability (like Sense and Sensibility, Only Contemporary)

Today my friend and I had to wait for ten minutes in front of a building because a vehicle had parked against the only curb cut and the driver left it unattended. Ironically, it was a wheelchair accessible institutional van, and the lift was left lowered. So I guess the driver thought no one else at the hospital building would use a wheelchair or scooter. Since my friend's brother-in-law rides in a wheelchair, she is familiar with such issues and was equally angry. I am exhausted from going to PT and the other office, though my left shoulder is beginning to unwind. That's good.

I'm still showing Hoffman's sign. The PT said it can take the nerves a while to "realize" they're not compressed (or to actually decompress, I guess), or it could be the disc below, herniated. One friend has me repeating the "I did not rupture the disc below" mantra, which may be another way of saying, "denial." The bladder issues have been substantially better, and I'm not running to the bathroom all the time or leaking, with a few exceptions when I was extremely exhausted and in very terrible pain. I guess maybe the PT's explanation applies here too, that it takes the nerves a while to decompress or recognize that decompression. I'm glad for that explanation, because I was worried that the problem hadn't been addressed or things hadn't worked after all. Anyone who knows me would be amazed how little I can suddenly do. The PT and I decided on a new category of "weenie" for my quantified hand strength (weakness?, anyway, it was my term, he just thought it was funny). So I have to do exercises pushing my shoulder blades back and resistance exercises with a rope thing (since I'm allergic to latex therabands), gently pulling my arms back at the sides. I can't believe how difficult this easy exercise is right now. It's unbelievable! And I mean this in a fascinated way since this is strength that will return quickly with use. That's not something that concerns me.

Since my husband's lost a lot of work time to help out and has impending deadlines, I am scheduling my friends who have volunteered to help me out with some chauffering. With PT 3 times a week for now, a doctor's appointment or two a week, and some work meetings, my husband can't do it all, especially given that he's doing most of the shopping, cooking, cleaning, increased laundry, childcare tasks, and helping me.

I feel like a moocher, but my friends seem genuinely glad to help. So I went to PT today and my friend drove me down the street to the cardiologist's office to make an appointment in person. My husband joked they probably only take appointments by phone, and I said that I'd call from the cell phone in front of them. Fortunately someone was there since it was lunchtime. The front office person/usual receptionist apparently isn't the grouchy one. She seems to be a very gentle person with a kind demeanor. But while we were talking, my friend heard the other office person snarling at a patient about having to deal with two other patients already and some other issues. I hope I get the care I need there and will find out the front office person's name and try to just deal with her.

My internist added today that the cardiologist's office is now run by the same group that was running his the last couple of years. He says the "front office staff there was often so rude it became legendary, and there was nothing I could do about it. Most docs are stuck in that situation, unfortunately." I wish more doctors would be this brutally honest. I love him for that. He just works with his nurse and his wife now, and outsources some billing and other responsibilities, thus lowering overhead and costs to patients.

My friends are impressed with how my husband can now twirl my hair and pin it to the back of my head in a few seconds.

And I've got to, in turn, go show him quickly how weirdly difficult these easy exercises are! And finish the movie I fell asleep during last night.

Tuesday, May 27, 2008

In the Inbox

Thanks Frida,

I'm sorry you had a bad experience! As a rule, most doctors have rude staff. I would be persistent. There are other docs, but I've found that many of them can try to subject you to unnecessary cardiac procedures.

Regards,
[Internist]

I love it when he calls it like it is. I think I'm also going to tell my PT tomorrow that it angers me when the other PT in the office whips my medical file out of my hands and starts bossing me around (when my PT is with other people) because he doesn't like me reading it. My PT isn't that controlling, but I've decided I don't want Patriarchal PT near me.

I miss Retired Cardiologist, who didn't subject me to unnecessary procedures but did monitor me and worried badly about my low ejection fraction like a mother worries over a child. We talked about books we had both read. He would pounce on whatever book I brought into the office and would want to know more, even if I didn't know more yet. We talked about my obscure medical condition, a condition which he wrote about as one of his first independent projects in medical school. His daughter worked for him as his nurse. When I was 9 years old, he ran my cardiac stress test when I first started having problems. He saved my mother's life from an illness that could have killed her immediately, taking her on as a new patient the same day my father called. He got my father back in shape after a virus attacked his heart (he was once on a transplant list). He listened. Why, oh Retired Cardiologist, did you have to retire? Now he's going to sit around and read books all the time, which his wife hates.

Dear Doctor

My internist says that Americans are too accustomed to putting up with bad medicine. When he said this, he referred to my inability to get test results from another office, not to actual medical skill. The staff at some doctor's offices I've been to are paternalistic, condescending, and rude to patients, often getting away with it because patients desire or require care from a particular physician. However, I've been known to change practices based solely on poor office management and bad manners. I wrote the following letter today and faxed it. If the doctor wishes not to see me because of such a complaint, then that's not a doctor I would want to see in the long term anyway. Compare and contrast to the spine doctor's office, which accommodated me even when I made a mistake--they didn't have to do so.

May 27, 2008

Dear [Cardiologist]:

I contacted your office mid-morning today to try to set up a new patient appointment. I have tachycardia and have been passing out post-surgery; my cardiologist has now retired. Because of my multiple medical conditions, I am selective in choosing new physicians. Dr. Internist, my physician for the past seven years, highly recommended you, and I trust his recommendation.

However, the office assistant was snappy on the phone this morning, and though she promised to call me back, never did so. She also tried to schedule me for an echocardiogram, although I’m not sure that I need one, especially without an initial consult. Although I left one email last week for an appointment, I phoned this morning since I have to plan phone calls carefully—my neck brace blocks the mouthpiece to the phone and my arm has been giving me too much pain to hold it (and often, to eat or type or read), and I need help positioning myself to use the phone. I am also trying to plan around 12 PT appointments, various meetings I must attend at work in the coming weeks, and events for my children’s school. I must also schedule transportation for each of these since I cannot drive, which leaves others waiting on my schedule as well.

Although certainly I don’t need an urgent appointment, I was putting some of my other scheduling on hold to prioritize the cardiology appointment. I am aware that some offices (such as the specialists at [hospital]) only make new patient appointments every two weeks, but I was not informed if this was your office’s policy; if it is, informing me would have allowed me to proceed with my other scheduling. Honestly, I feel hesitant to call back because of the unwarranted rudeness in tone to me.

I’ve found office staff make a great difference to whether I feel empowered and optimistic about my health care or whether I feel at the mercy of medical institutions and my physical disability. Because you were Dr. Internist's student, and because he (and presumably his students) is concerned about the empathic treatment of people, I wanted to let you know about this situation. However excellent your skills are, I can’t see you if this is typical office practice, and you could also lose other patients. Thanks for your attention to this matter.

[Closing and signature]



Faxed; follow-up by mail

Monday, May 26, 2008

My Elizabeth Weekend

This weekend Elizabeth of Screw Bronze! challenged readers to do something fun and out of the ordinary.

Today I went swimming with the kids at my in-laws. Given my current level of disability, quite an accomplishment. I couldn't wade in more than chest high because of the neck brace, but was able to do some gentle movements in water that helped my muscles unwind. It was also good to be outdoors with family (including my sister-in-law's cute, new round baby and her 2-year old) and the new family of doves nesting in the holly tree nearby.

This weekend we also took the kids to see Prince Caspian, the new Narnia movie, and since we brought my footrest and pillow, I was reclined enough to have energy to get new shoes for our son afterward and a few items my daughter needs for camp. I slept 12-13 hours after, though, and didn't have enough energy to get out until mid-afternoon, but slowly, slowly getting better. Lots of arm pain and couldn't feed myself dessert tonight, though I'm sure I didn't need to. It's good to be out even though people laugh at me and are mean (hey, it's not all sunshine here, though better) and I almost got backed over by someone again when my husband had to back the car out for me (no disabled parking).

Even better, I've been able to handle much of my shower and much more of getting dressed myself, though hubby hovers. Not a bad idea given the continued very low BP. It goes much faster when I can do more myself, though it uses a fair amount of my energy. I love being independent! If only I could do my hair completely myself. I hope that's soon.

Saturday, May 24, 2008

Weekend YouTube

Last weekend my sister and I exchanged favorite YouTube videos. You'd think we could do this long distance rather than in person, but no.

One of her choices was a film we used to watch sometimes while waiting for the schoolbus after school. I didn't realize the cartoon was that short, but I guess since it took us a week to get through that mongoose movie, it couldn't have been that long. Presenting Johnny Fedora and Alice Bluebonnet, a love story:

[Alice and Johnny, two department store hats, get separated. Johnny continues to pine for Alice, and goes through difficult times and near-death hat experiences, only to be reunited with Alice as they both are placed on the heads of two horses.]

And my choice, Rob Paravonian's Pachelbel rant:

Friday, May 23, 2008

More appointments

Flowchart-->go to new cardiologist. My internist recommended one who was one of his best students for part of his training, so I know he'll be good and will be someone who listens and pays attention.

I had my first real follow-up visit today, but felt disoriented because we went to the wrong office. This appointment was supposed to be in the Edward Scissorhands-land office, not Big City. They still let us come in, though, and said they had a few open appointments, though they seemed more busy than I'd ever seen Big City office. Everything seems fine except my recovery is slower than most people's. I think the fall and the lack of muscle relaxers account for that (I have way less flexibilty when trying to turn my head to the left because the muscles are rigid), as well as my other medical problems.

Humorous conversation
Wunderkind: Swallow. You seem to have trouble with swallowing?
Me: Yes. I can't eat hard foods like chips or breads. [I choke.]
Wunderkind: Here, let me write a prescription for a steroid...
Me: No! I have osteoporosis. I don't need to swallow. [Steroids weaken bones, and mine are very weak.]

I feel like the Bride of Frankenstein. Wunderkind took out the stitches. My head didn't fall off or anything. I teased Wunderkind by asking the PA if Wunderkind was able to do that okay, since he doesn't have so much experience in that regard (he's only cut stitches off two patients before). He cut at each end of the row and pulled out 2 rows of about a foot of thread. It didn't look like that much stitches at all. My hair adds to the monster effect--it's all frizzy today and the purple color looks terrible today rather than the cool splash of curl down the side of my face I had before, with another swash further back. The more I wear the brace, the weaker my neck feels.

For once, I can't wait to go to PT to get my shoulder and neck to unwind some. I had to sleep on the couch last night because I was yelling from pain every time I got close to lying down (even though I use these high foam back wedges).

Thursday, May 22, 2008

Thanks for the memories

Quiz
To celebrate being able to get to the bathroom without help and to celebrate repositioning herself from lying down to standing and from standing to lying down (head heavy!), all by herself, and similar small tasks, do you think Frida would:
a. take a short drive with the family so as not to overtax herself
b. go to a family member’s nearby home so as to get some social contact and relieve that housebound feeling
c. completely exhaust self to the point of passing out

Answer below.
--------------------------------------------------------------
Answer to Quiz
c. completely exhaust self to the point of passing out (Elizabeth would be proud!)

What can I say? We had 4 great tickets to a really great event we purchased months ago, and it was well worth it--once in a lifetime for the kids. But at the end, I came within (I estimate) a few seconds of passing out again. All the numbness/tingling returned, and I felt like I’d sucked down a bunch of nitrous oxide or helium. I was tired and shaky even from using the scooter; we were there about 3 hours and out of the house about 4 ½.

Excluding factors: was well hydrated, had eaten enough (enough protein as well), not overheated, not overcrowded in our section (only a few other people in disability section). No muscle relaxers this time, halfway through my typical moderate dose of hydrocodone (which I’ve taken since last fall when needed). Not given to hysterics, have not passed out or nearly passed out before. Maybe the brace is cutting off my blood flow? Oh, wasn’t wearing it in the bathroom. Hmm.

Imagine flowchart here
My internist says to:
-Ask at the follow up appointment tomorrow whether it could be related to the surgery.
-If not related to surgery, go to a cardiologist.
-If it recurs, go to the ER.

I told the internist that my perception of the ER is that I'd go and sit in the waiting room for 5 or 6 hours, the symptoms wouldn't have recurred in that time, so they'd blow me off or run a bunch of labwork/EKG that would show nothing and send me home with a referral to a cardiologist and I'd have to deal with billing discrepencies for huge amounts of money for months afterward. He said that’s true 95% of the time, but it’s that 5% that they can possibly find something and fix it which makes him recommend it. Not sure I’m convinced to go. As Elizabeth (and one of my doctors) would say, I hear horses, not zebras.

My typical pattern is an often very high heart resting rate (100-120) for several weeks, with occasional bothersome but benign arrhythmias. Now I alternate between very high rates and under 60, which I’ve not had before, and occasional very low blood pressure. I will have to find a new cardiologist since mine retired and I don’t want to go to someone by default (the replacement). I worry about a new cardiologist believing me. The former one did, especially since he had treated other family members. I liked him. We got along well. He got upset that my former internist didn't treat some issues that showed up on labwork (she couldn't believe it since I was very young and healthy then, and therefore ignored test results confirming what she was looking for). I dread filling out new paperwork, because who will believe all the medical issues? No doctor does until they see them in effect. They can't see all the horses for the zebras (they're thinking I'm hearing imaginary zebras, when there's a forest full of horses--this metaphor is getting really messed up).

No Yoga!
My husband joked with the hospital PT about me doing yoga. Not realizing he was joking, she said, "NO! She cannot do yoga!" We clarified, but her strong response was amusing and heartwarming given the number of people who think they can cure my spine with yoga in particular, or swimming or acupuncture or sitting up straighter or metal detox or allergy treatments or psychiatry or willpower or whatever. I have to say I know a number of yoga practitioners who are not yoga pushers; I can see people I know reading and thinking, "Did I push yoga on her?" No, you'd know if you did, because the people who do are very forceful about it. A few people preach to me about why I should be doing it and how it will specifically help me, despite all the contraindications against it for me. You'd also be amazed at the number of doctors who tell me to bend in ways I shouldn't and that can cause vertebral fractures for osteoporotic people (not my current doctors), even at my protests. I did so, because if you don't, think you're considered a noncompliant patient/malingerer. You can't win with some people.

Postsurgery Blogging
The doctors promptly wheeled me off as soon as they injected Versed (I’ve remembered a 10-minute wait with my daughter’s tonsillectomy and my mom’s and others’ surgeries). I have to wonder if word of my Versed disinhibitions had traveled upstairs from the pain management procedure area.

I don’t remember being wheeled off, but I remember some odd snippets in the OR (surgical prep took an hour; the actual surgery started an hour later—they paged my husband). My husband told me postsurgery once that he couldn’t understand what I was saying on anesthesia, so I hope this was the case last week with the doctors, and I hope that some of what I was thinking was not actually being said or was hallucinated, because I’m kind of disturbed by one thing I think I said early on. Why don’t doctors address this concern? At least they didn’t treat me any differently afterward.

I remember being moved sans clothing, which I didn’t like, trying to tell the surgeon about my husband’s upcoming camping trip. I also remember telling the PA about 3 emails I needed to send out and getting no response from him, which frustrated me (I'm sure he had other concerns!). I remember telling the surgeon or a nurse (don’t remember before or after) that I made up something or people think I make up something about illness, then saying I lie when I’m under anesthesia, and that I was normally more…(paused while I searched for word)…sedate (great double meaning, punning while near unconscious). When I was very woozy/in and out, I saying something like that I’d never let Dr. S stick me with needles (insensitive doctor whom I went to years ago for some of these issues), and I remember (or hallucinated?) someone saying something about what I said during a pain management procedure about something I liked and couldn’t figure out why they’d bring that up then. Later I realized I was saying something while crying rather than thinking it (not something I want to share with others; postsurgery, I think). I couldn’t have talked too long since they intubated me (early, I hope).

As with the passing out issues, I’m not fond of the time lapse/incomplete and out-of-order memory phenomenon. It makes me feel like I’ve lost my mind. I’m glad the anesthesiologist told me as much detail as he did since some small part of me remembered that as I was waking up and could make the connections. I’m upset that I was given a morphine pump since the anesthesiologist and I agreed presurgery that he’d do something different, and predictably, I got very ill post-procedure (staying in the recovery area much longer and spending most of the day throwing up). I’m used to throwing up in privacy and got throwing-up constipated (sorry!, needed to throw up and was holding back as much as possible) because the nurses were still standing there, or later, the nurses and my husband. It took me a while to realize they didn’t want to leave me while ill, but how awful, to have to attend an adult being sick like that! I was trying to be quiet in recovery because I heard a man’s voice to my left and realized there must be another patient near me in the recovery area. It would have made me more ill to listen to someone retching. I remember not wanting to be left, though the recovery nurse was in and out a lot, she wasn’t solidly there enough when I was first waking up, at least that was my perception. I felt really afraid then. But mostly people were around and helping. I can't say how much it means just to hold someone's hand when I am feeling that ill and in pain. I'm sure the human connection helps healing.

People kept asking me about my work, which I realize was to test alertness, but really, I did not want to talk about my work. The job is fine, the lack of disability accommodation isn't. There are new tables and chairs not only in an open area, but the adjoining pathways, including in front of the elevator. I hope these aren't permanent, but probably are. They make getting on and off the elevator extraordinarily difficult. And the path isn't going to be clear if someone leaves a chair pulled out. And I can't even turn my head to check for traffic, yet they expect me to park far away in disability inaccessible parking?

I don’t know why the Versed/memory issue bothers me so much, but it does. Glad life seems to be returning back to normal, by degrees. Which do they think is the real Frida, the one who they see on a regular basis, or the one who reveals odd thoughts under anesthesia? I’ve been wanting to blog more but have been short on energy, inexplicably. I’ve had some of the word-finding issues again, which I now think is pain-related since that seems to be the common connection.

Today I was thinking, I really wish for someone to make a meal or two for us since my husband’s getting worn to a frazzle and that means we take shortcuts, eat less healthily. My mom called not 15 minutes later offering to bring over a few meals this weekend! An answer to a prayer not voiced.

Points of gratitude:
-Cards and kind emails from several people, and some goodies from one dear friend (yes, you)
-My sister, rubbing my hair and shoulder when I couldn’t even open my eyes from pain.
-My sister, playing games with my kids to give them something to do, letting my daughter take her last dragon in the Dragonology game.
-My husband washing my hair every day so my psoriasis doesn’t get out of hand, and shaving my legs, and fixing the toes on my compression socks and repositioning me over and over. My sister said she didn't see him sit down hardly at all the entire weekend. When she was helping me or the kids, he was trying to get caught up on laundry (we're going through more towels).
-Being able to take myself to the bathroom now and sometimes reposition myself from sitting to lying down. That’s difficult to do—head heavy!, neck hurts.
-Able to get some work done at home now.
-That I didn’t seriously injure myself last week. My wrist is still green and my hip black and blue.
-My son's teacher read him my father-in-law's email to friends and family right after my surgery was over and that I was doing fine and also an email the next day that I was going home. She must have been checking, because she never reads or responds mid-day. And someone also gave my daughter a note.

Points of irritation:
-My direct supervisor does not like it if I mention a health issue at all; if we pretend that accommodation is needed for other reasons, then he’s okay with it. So I really didn’t know how to tell him I’d be out of commission for a while, even though I had to, since not showing up or doing any work would obviously be a problem. And then he couldn't even say, "Good luck" or "Hope everything goes fine" or anything.
-People expecting an immediate recovery, such as the diagnostician at my son’s school, who wouldn’t get off the phone when we were on the way back to the surgery center (my husband let her know the situation) and who is very terse and nonunderstanding with me. And I quote: “But her surgery was two days ago! I thought she’d be fine by now.”
-That the ADD questionnaire has a lot of overlap with autism (my son’s definitely not hyperactive), so I feel the school will go toward that diagnosis rather than affirming autism. That means we can request an independent evaluation, so I don’t know why I am so worried. Actually, I was recently told they can turn down an independent evaluation request—I thought we were allowed to have one.
-People thinking that the surgery will cure me completely and forever and asking when I'll be completely well and normal. I want to say, "What makes you think I promised that?" Yes, the signs of cord compression are gone, and I hope that as my neck heals I can sit up longer with less pain. But my low back and arthritis issues have been causing me most of the pain! That said, I am going to try one more procedure this summer that I hope will increase my ability to walk and stamina for walking and standing (piriformis injection to paralyze that muscle, since it squeezes tight because of the hip and sacroiliitis and arthritis issues). More money versus more ability, what a decision.

In Other News
The paramedics have asked my mother-in-law how I am. Their memories appear to be intact. Blush.

Monday, May 19, 2008

Brace (Yourself)

Immediately after surgery and for the first few days, the neck brace felt supportive and comfortable/comforting. Now I feel like shredding it to pieces with my bare nails like an angry cat. ("Tell us how you really feel, Frida..."). It reminds me too much of being bodycasted. I feel trapped. I can't breathe. My chin hurts. My skin hurts. I'm feeling a little better, but this contraption is annoying the cursewords out of me.

My shoulder's been hurting a lot, thus not much typing or reading. I've had a lot of great blog ideas spinning around in my head. I feel like I can't get any support for for one shoulder/neck muscle and like it's stretched like a thin wire. Wish I could take a muscle relaxer.

Saturday, May 17, 2008

"What Did You Do To Your Sister?!"

Today my sister colored my hair with one peacock blue streak and one bright purple/blue streak. My mom's reaction when she saw: a dropped mouth, and a pointed "What did you do to her!?" to my sister. My mother's rather conservative in manner. My sister confessed she's been wanting to color hers (her own, not my mom's) in bright streaks, too, which could be amusing among her very, very conservative friends. As differently as we think sometimes, she and I are still on the same wavelength!

When I feel this out of the ordinary, might as well do something fun. Haven't even been able to watch television until today because I couldn't sit up high enough or long enough, can't read either, can't type a lot. That fall didn't do me any good, so we take our entertainment where we can get it.

Thursday, May 15, 2008

Naked in the Shower with the Paramedics

I'm having a lot more pain because I passed out while sitting on the shower bench for the 5 minutes a day my head isn't braced, falling forward on my face and wrenching my neck sideways. I was too out of it as I came to to realize I shouldn't move and why. I feel very lucky that I didn't fracture anything since my bones break easily--my forearm and hip are very bruised, as is my shoulder, and I have a lump on my head and a cut on my knee. Now my shoulder and arm hurt worse than my neck, which is not a good sign. But I didn't pull the hardware out of place in my neck, thank God, but I may have ruptured the disc below it. Whimper. I'd have been more embarrassed if I hadn't been in such pain and fear at the same time.

My mother-in-law works at the fire department, so she heard the call come through. So at least I'm not likely to ever see these paramedics again (not!--there are regular family and holiday parties, and she volunteers at all kinds of events we go to, as do they). Fortunately the kids go to these more than we do, but she's hosted a lot at her own house.

I had to tell my husband:
-when I say I'm about to pass out, I mean now. Don't leave to get my brace.
-it's not a good idea to tell my mother, who had just arrived for the morning, "everything's okay, but the paramedics are on the way." Soften it a little.

My husband covered me up with towels, but still not enough covering for my taste. I've never see him freaked out like that. I was quickly telling him to put the dog out of the way, call the kids' school, call our kids' doctor (morning appt for one kid), get my medicines together with the hospital form in case of transport, etc. He said he's calm except when it comes to me getting hurt or injured, that it scared him badly, poor guy, especially when I wrenched my neck. I was still feeling really dizzy/faint at that point, though I felt better after a few minutes. The paramedics had us call the doctor's office for further instructions. Fortunately they were in the office today since almost always they're in surgery in a different city on Thursdays. A trip to the ER would have taken 6 x longer.

The paramedics think I passed out from pain level, which I wouldn't argue with. I was mentally thinking, "I can make it through a few more minutes. Just a few more minutes. This is really difficult...I feel really dizzy..." I've been taken off muscle relaxers to be on the safe side, which is making getting up and down near impossible. My heart rate's been too high, even for me (resting 90-120, most often at the higher end), so trying to watch that. The whole right side of my body went numb before I passed out. Was strange since it's always the left side.

Achievements today: got dressed. Trip back to surgery center, re-x-rayed. Frequent trips to restroom.

I have to say the staff and doctors at the office are all really, really nice. It helps when you're not feeling like yourself. I couldn't imagine dealing with some of this stuff with the crabby office staff I've had to deal with in other places.

My parents and in-laws need some kind of special thank you for everything from potato soup to dropping everything for the kids multiple times to picking up a different kind of pillow to relieve pain (and intuiting that two would be better than one).

Wednesday, May 14, 2008

Back home

Back home and doing fine, just difficulty typing for long b/c of shoulder pain/muscle fatigue (not overwhelming, it's fine). More later! Miami collar is much softer than I thought it would be.

Sunday, May 11, 2008

Phobias

I have this phobia that something will happen to me and then my kids will be traumatized for life, though the material conditions of having a parent with a disability and health problems can be traumatizing anyway.

One of my friends stresses staying in the meditative state as much as possible, esp. approaching surgery. I think I need to do that. I have trust issues, though, and am not sure I even trust the spiritual to keep everything in divine order. My friend is so much more centered than me.

Saturday, May 10, 2008

#1 on google! #1 on google!

Under "Hallmark stores" and "disability."
http://www.google.com/search?q=hallmark+stores+disability&hl=en

Maybe they'll sue me. No, wait, they're not accessible, at least not the one near me.

I have so got to get a life.

Frida's mind spirals around

Now that I've said something on Hallmark stores and disability and googling Hallmark stores and disability, my blog already appears when I google Hallmark stores and disability again. So now what will happen if I google Hallmark and disability?

Obviously I don't know what to do with spare time. I'm not accustomed to it.

Can We Give You an Award, Linda Van Deusen?

When I googled Hallmark store and disability, I came across the story of Linda Van Deusen, who has filed 31 lawsuits against inaccessible businesses, unbeknownst to those who know her. It brings tears to my eyes that she says: “I’m not a bad person. . . . I’m trying to help all of us.” Linda, you're not only a good person, but you're a hero. You show a lot more strength than I do.

Such actions not only help at those individual businesses, but help nationwide when there's a chain business and citywide or statewide with government entities. As people discuss the cases with others, others will recognize that they need to make their businesses more accessible as well.

A brother of our friends had to sue a small city court because the building was surrounded by stairs and he could not get in to pay his ticket, leading to increased penalities!

I'd say 1 out of 3 businesses where I live are inaccessible (no curb cut from the disabled parking??, steps to the door?), and that most have some accessibility issues. What about you?

Mother's Day Shopping

Has anyone in a wheelchair or scooter ever tried to venture into a Hallmark store? I could tell pre-scooter that it obviously wouldn't work. Glass shelves too close together with no way to turn around. I've wondered before what my liability is when the clearance requirements (and I mean for wheels users, not prices) are obviously not met. I'm not sure I'd want to test it.

So we went into a giant Christian card and gifts store today. They had an automatic door opener for people with disabilities, which was great, and the aisles were nice and wide for maneuvering. I was afraid I'd get prayed over, but the worst someone did was pat my arm, and most people seemed antsy about which way I'd move. Most gifts I order long in advance and I keep lots of greeting cards of most types on hand, but I had not had time recently to get some specific for Mother's Day. I had a number of ideas for my mother-in-law and mom, but they get jealous of each other if they don't get the same item, even if it's the same cost. And I had trouble thinking of something that was the same that they would both like. I also purchased something for my grandmother and for my aunt, whose son won't be seeing her that day, and I'm not sure if she'll receive anything. I found some angels my aunt mentioned that I know at least 3 of them like, and some African violets for each that we're putting in colorful pots.

We tried to go to another store, but one door was partially blocked with a shelf so that only walking people could enter, and the other door was locked. It was also impossible to try to get over the door mat anyway. Why don't they just post a sign, "Abled Only"? An employee (actually another employee, too) saw us try to get in, and my daughter and husband try to get the other door open, but wouldn't come open it. When I said a sarcastic "thanks," and let the door close, she came and unlocked it. She claimed not to see, but she had made eye contact with me and saw the problem, which I pointed out. No answer.

My recent policy has been not to do any business with a place that is not disability friendly and to make it clear to the business owners why. Few places are really accessible, but people can at least try.

Oh--and someone parked their car on the access ramp next to our car as I pulled my scooter right in front of it to leave! And wouldn't back up right away, though it was the only way to leave the building! He acted confused about why I didn't just jump the curb or something, even though the scooter won't fit between cars. People do this all the time. They act so damn confused about why I need the ramp/access aisle. Scooters and wheelchairs don't have wings. Tired of disablists.

Rest

I slept nine hours last night but am still tired. Have been dropped back at home by family because of back pain so they can still follow their plans. Lying down is so good, nerve pain is so bad.

Thursday, May 8, 2008

From the mouths of babes

My son earned 100 on his Utah project. On his self-evaluation form, he wrote these answers:
Why did you choose this state?
Because people can be polygamists.
I haven't talked to him about this issue, I swear!! Except he brought it up after he started the project and had read some books, but when we asked him what it was, he had it confused with homosexuality, which he does know about (since we have friends who are same-sex couples), and I clarified what polygamy is. Not the same thing. No comment from the teacher, no surprise. She's got to wonder sometimes, with some of his responses on papers.

What would you do differently if you did your report over?
I wouldn't write this.

Answer to the rest of the questions:
What was your best work on the project?
What did you like most about the project?
And about 5 other questions:
Each answered with: Coloring the flag.
This, unfortunately, is where the autism issues/answering questions problem comes in.

Wednesday, May 7, 2008

Fear and Something or Other (Lack of Titling Creativity?)

I was taught not to express my insecurities, to show them to the outside world. I have a lot of them. I ask a lot of questions because I think I am doing everything wrong. But I've been taught it's bad bad bad to show one's insecurities, that it makes you look like you're incompetent rather than unconfident. Nevertheless, I'm always surprised when people express in some way that I seem confident and unafraid.

Along those lines, I'm surprised that I don't feel more scared about the surgery than I do. I think I've been staying so busy trying to keep up with other life demands in advance of it. Right now I feel stomachy-ill from trying to get everything I need to done for everyone's sake and before my sister's family arrives. I think staying busy is maybe keeping me from thinking about everything. We also meet with my son's school Monday afternoon about his autism evaluation and have an arts event at the school that evening. Besides a few too many errands I'm not up to doing. I guess if some don't get done, they don't get done.

So...what happens: Tuesday morning I'll have an anterior cervical fusion. I get to arrive at 6 a.m.--the only time I get up before 5 am is for flights, and that's been a long time! There are videos of this procedure (I mean animated, not gory), which I've watched. Basically, the surgeon removes the disc (relief of spine pain!). Then he'll put in donor bone and metal plates with screws to hold it all in place. It will take a couple of hours. I've been told they'll keep me overnight, so it may take me a bit to let everyone know how it goes. If there's an internet connection there, though, I might send hubby to give a quick update. Apparently most people have immediate relief of nerve pain, though then there's the surgical pain to contend with. The most difficult part: getting off soft drinks (my very very bad habit) as required for several weeks and hopefully permanently. A fair number of people have some trouble or pain swallowing, which makes me edgy. Losing weight, good, not breathing well, bad. The other difficult part: neck brace for six weeks--the support will probably help, but I hope sleeping isn't difficult. Shopping list: better pillows: straws for easier drinking.

My in-laws will be here to take care of the kids and dog, and my sister will fly back in on Friday to babysit me for the weekend--my husband already planned a camping trip for 30+ families that weekend (there really is not a good or perfect time to do surgery). I think I'll be fine, but we all feel better having her here, and we'll have some catch-up time without kids for the first time in 10 years. And hubby will cancel his trip and delegate if he needs to.

Those of you who have been reading here for a while know that all kinds of surgery and post-surgery fears no other person would think of are running through my head, but I'll share those later, when they haven't happened and I'm recovering well. There's Versed, of course, which they generally administer first.

On a good note: I don't seem to be having so many problems with word usage and memory recently. My pain level has been lower, and I think that's why. The issue really did seem to be at its worst when my pain level was highest, as in round-the-clock dosage of hydrocodone, continually rotating ice packs, and not leaving the house unless absolutely necessary. I think pain short circuits me.

Maybe this surgery will make it a lot easier for me to sit up longer and reduce pain, and I hope the bladder pressure issues. I am hoping for the best. I know the surgeon is really good at what he does.

I promise medical humor when I'm feeling better! There's always something out of the ordinary when I have medical procedures. It may take me a few days beyond surgery to get back to reading blogs, but I hope everyone is doing well in the meantime--I'll be thinking of all the bloggers I read, too.

Monday, May 5, 2008

Why I Am Not Like You...An Imaginary Response

In response to people who think others with disabilities are the same as them, that disability is an arbitrary division of people much like other divisions of people, I have to turn to the diversity model rather than the sameness model.

In terms of physical disability, we are not like "you" (here, I mean the abled, not my readers with disabilities). Having a scooter or wheelchair doesn't make us the same. Wheels don't equalize the "playing field." As a matter of fact, we can't access the playing field.

Case in point: I received an email today from a close friend. Her adaptive keyboard is broken and her voice software inadequate to meet her needs, so she says not to expect email from her for a few weeks until the keyboard can be fixed (under warranty, very expensive replacement). She will, however, continue to read email. She wrote 4 sentences total, and mentioned at the end that it took her 29 minutes to type her email, i.e., she really isn't ignoring people and really can't respond. Some of her family and friends need to know this because they don't "get" it. Those who think we who are disabled are the same but different miss the huge efforts required to complete everyday tasks and that often there are tradeoffs that must be made. Even using voice software or an adaptive keyboard is difficult for her. You can imagine how much more difficult her work will be this week.

Another case in point: Unless you find yourself jumping up in the middle of the night shrieking in pain ("jumping up" being a relative term) or have other similar challenges, I'm not like you. That's why your recommended yoga, acupuncture, walking (!) recommendations don't work for me, not most of the time. Great that they worked for you. They don't for me. I can't increase my exercise without decreasing my workload, because increasing my exercise, especially walking, increases my pain so greatly that I cannot work. Thus I'm pretty ticked at someone at work, someone I barely know, who said I needed to be walking more. My perspective is that I should have purchased the scooter four or five months earlier. Ideally, I'd both work and walk. Right now it's a choice between the two. My lower spine pain is so much less, so much more manageable.

I didn't know until last night that there is a muscle spasm similar to severe leg cramps (I mean the kind that make you double over) in the neck. A quick Google search tells me it's called acute torticollis (fancy name for "bad neck spasm," or "make your own cute turtle collar"). I ended up dozing off while standing up as I tried to continue dealing with the pain. I'm not sure what brought it on. It felt like my bones were being pulled aside, and I'm still sore. Probably something to do with the disc issue.

I am not glum, as my recent spate of posts may sound, much to the contrary. I'm just sleepy and busy and a little pensive. I've been running a fever (just got presurgery labwork back that suggests a hidden UTI that I have to treat pronto) and have ankle swelling with large hematomas (?!). My sister and her family will also be here for four days. Lots to do this week, and we're having 23 people over Sunday. My husband asked if I really thought that was a good idea. Of course it's not a good idea. It's a terrible idea. But I really want to do it.

Sunday, May 4, 2008

Breast x4, thyroid x2, stomach x2, brain x2, bone x2, leukemia x1, lymphoma x1, ovarian x1, cervical x1, prostate x1, colon x1, skin x1

When you are in your 20s, you receive graduation announcements, flurries of wedding invitations, then baby announcements. Everyone seems pregnant, all the time; even men claim that they're expecting. Then you hit your 30s, and you get announcement after announcement that friends, coworkers, acquaintances, family have cancer. A few of them die. If only the pharmaceutical company administrators would stop stuffing their pockets and invest more in cancer research. If only we could invest money in health and in education rather than in guns. If only.

Saturday, May 3, 2008

Medical Debt

Medical debt is an issue for a lot of people with disabilities, so let's talk about it. According to one debt consolidator:

"Most people think that most of those who file bankruptcy did so because
they got way over their heads in credit card debt; however, research shows the truth is much more surprising. For the years 2003 and 2004, just over 50 percent of all personal bankruptcies were the result of medical debt by those with health insurance." http://www.bcsalliance.com/y_debt_medical.html

Another organization finds that:
"nearly 27 percent of filings are a consequence of primarily medical debt,
while in approximately 36 percent of cases medical debts co-exist with primarily credit card debts. Studying the post-bankruptcy scenario, we find that filers are 19 percent less likely to own a home even several years after the filing."
http://www.aei.org/docLib/20060719_MedicalBillsAndBankruptcy.pdf

What this analysis neglects is that a significant aspect of credit card debt often is medical debt because medical providers take credit card. In our situation, we would not need to file bankruptcy, nor would we want to, because we have enough assets to cover the debts and are young enough to start over financially, leaving much of our income dedicated specifically to medical expenses. Since we can do so, it's our responsibility to do so. Others do not have that luxury.

A review of our medical expenses for the past four months shows $2800 in medical bills after co-pays and insurance denials. We have also had, I estimate, $400 in pharamacy co-pays, $700 for our daughter's oral surgery. We also have the usual and always budgeted dental and optometric expenses. $800 for the cheap scooter. The remainder of the year will look similar. I anticipate fewer doctors' visits now that some issues are better diagnosed, but there's the surgery and PT at a $38 copay per visit.

So what does this mean? Budgeting a very large section of our annual income for medical expenses, at least $15,000. I don't anticipate continued MRIs since I don't anticipate changes there, but injections under anesthesia for pain relief cost me $450. This also means not making unnecessary follow up visits since it's not good for me or for the others on my insurance plan, and continuing to prioritize my medical problems as I have been. I should not feel guilty for not following up with all specialists. I trust my discretion there. I also need to insist on doing more of my physical therapy at home and get rid of my guilt about not going in as often as I "should." For my own sake, I need to insist on getting a plan I can follow at home set up, perhaps revisiting infrequently to add more exercises. Ten visits a month cost me $380. Already, I get lab results forwarded from one doctor to another so that bloodwork isn't duplicated. Even though my insurance company will still generally pay, that does no one a favor and just requires a bit of my time. We should also ask for payment plans from doctors' offices and hospitals since it's going to be at very low or zero interest versus much higher interest on credit card.

Ignoring the problem doesn't make it go away, of course, and we have to be exceedingly careful. We will actually keep our level of medical debt the same since we're about to receive a few thousand dollars back in taxes and almost $2000 in reimbursement for the lift before surgery. That still doesn't take into account a different scooter. I've not been able to justify the expense to myself despite the inadequacies of mine.

We will do fine. I am confident that we will. I am not unnecessarily worried since our debt is not continuing to increase. Our income definitely exceeds our monthly payments, though it does get difficult to absorb additional emergencies/unexpected expenses (such as an urgent home or car repair) when you have a lot of medical debt, however. It goes down for a while, and then we have another setback. We have choices and good options. We will be going to one vehicle, for example, at the end of this month, and we telecommute as much as possible to save gas money. We have a budget and stick to it. It means continuing to use the library, and it means continuing to buy items used rather than new. It means being satisfied with what I have, and I am. It means continuing to go camping and staying with my sister rather than expensive vacations. The only trick is that we may have to sell our home, and that may be the best option to keep us from paying most of our monthly payments toward interest and since our house has stairs.

What else does it mean? It means we make better environmental decisions, buying no more than we need. It means no fancy cell phones and, in fact, considering eliminating mine as soon as we can. It means continuing to play games with our children rather than going shopping. My children will continue to learn that they have enough and to budget their small allowances and gifts from relatives. These are all good for all of us.

Friday, May 2, 2008

Primal Scream

Disability access issues, mostly from people more than physical barriers, even when I specifically pointed out the problem and the unfairness to me and other people that could easily be fixed. I feel better now. It's only a virtual scream.

$, $, $

We have $80,000 in medical debts. My surgery will probably add to it by a few thousand dollars for a few months. The scooter would add $6000. Our house is halfway paid off, so it seems the best option is to sell it and move within the next year, starting over, leaving $10,000-20,000 a year in our budget for medical expenses after insurance to be on the really safe side. This isn't atypical for people with serious medical problems, and I know several people who have second mortgages or have used all their retirement for medical expenses.

I hate my insurance company. I hate that they won't help pay for the scooter I need. They would only be responsible for 1/3 of it.

This is part of the reason I don't quit my job, though I think I will start looking for different jobs since working isn't the problem. If I can telecommute even more, I can work more hours.

I think we could pay this down over time, but it seems risky not to get rid of it all at once.
It's not something I've talked about because it's something I've been embarrassed by. $20,000 of this was for treatments for my son's autism not covered by insurance and probably as much accumulated interest when I wasn't working and my husband's income was much lower. I don't regret a penny I spent. He can now talk, he can participate in life activities, though often reluctantly. My husband had a fair raise this year, but most of the money goes toward interest rather than paying down the whole sum--even if you pay off $10,000 or $15,000 a year, it takes years and years to pay it down. I started working again when my son started kindergarten. I can't imagine what situation we'd be in otherwise.

We've got to cut even more corners. I'm tired of people thinking we're wealthy because of my husband's income and our house, purchased when we had no idea what was around the corner and when it looked like we could save easily. We ask for clothing when relatives wish to give us gifts, and often they shop for us. No spurious shopping or splurges, for environmental reasons, too, though we have a small allowance for a few items. My computer for accessibility was $3000, though; things like that and uninsured house flooding blow the budget. There was the Kindle, but this is atypical and he really probably shouldn't have. We're middle income and spent wisely for people who didn't have medical problems--even five years ago, my medical problems slowed me down; they didn't stop me from working. We didn't anticipate so much so soon, and for a few years I was too sick to work and my son too continually sick to leave in childcare.

For goodness' sake, we need to recarpet if we move, but I can't stand adding this to our debt temporarily.

One thing I need to do is pull out all the stops with family members and friends (my sister thinks we have lots of $ despite my protests, one of my friends makes comparisons) and let them know more clearly, exactly so that some of the expectations of us (in terms of travel, gifts, spending) are not misunderstood as unwillingness/being unfriendly. I need to let them know how much our insurance company is not paying for. We do allow ourselves to take the kids to the zoo or to the occasional movie, but we can't blow money because others think that we can. Often others think that we should be paying more by comparison (my sister). Appearances can be deceiving, and often we're expected to shoulder more of the cost of something because people think we can. Even though my husband was unemployed for a while last year.

Thursday, May 1, 2008

Disability Fairy

I just received a personal email from someone at work--I'd asked if she is okay since I'd seen her crying there. She's been told she can't work on an international project because of her health issues, which is ridiculous. So she's already started looking for other work. I've emailed back my emotional support and an offer of practical support.

This has got to stop. Our employer has no policy for employees with disabilities. None. So people play pass-the-buck. It's everyone else's job, and for the most part no one person shows any accountability for their actions. If I keep gathering people who are angry about lack of accommodations and their allies, the employer's going to have one heck of an angry contingent to deal with.

Every time I feel guilty for making my demands, something reminds me it's not just for me. It's for 1 out of 7 of us.

Blog Roll, BADD, Etc.

If anyone wants on my blog roll and isn't on it, please just email me and let me know. I'll update mine when I'm chilling post-surgery. It will take me a few days or more to read through all the great BADD entries and to comment as I can, but I'm enjoying the ones I have read.

I was reminded today that anyone can become disabled at any time, even young and healthy people. Although I know this person suddenly gets everything, I'd rather he not have to learn in this way.