Monday, July 27, 2009

More non-updates-doing fine

I am continuing to do fine so far! And I'm very pleased with that. Not much pain or bleeding and very thankful I had surgery when I did--I know I'd have been very upset with myself if I had let it go. And glad the doctor paid attention--she said people my age just absolutely don't get this, not for another 15 years, and even then, it would have only been 1/200 chance of being cancerous (she said 1/100, but I'd also looked it up). She said she was shocked by how things turned out. But I think we're both relieved now.

I keep getting locked out of my gmail and blogger account (password has been the same forever), so I've got to run more extensive spyware and virus protects and get my husband to help with computer security; husband says its probably some malevolent software. This means prying the computer out of my hands when he gets a chance and not giving it back for a bit. Nothing really that I'm worried about being compromised but sick of it. We've had our credit card number taken before and charged up years back, and if this happens again, I think a better punishment than jailing someone is transferring all our debts to them, and I actually would propose it as a serious solution. I am mad and was madder last night. That's just wrong. I will be in the middle of writing an email (or a blog post yesterday), and I'll get logged out because someone has opened the account on another browser (not my spouse, not me in another window or using another browser). I know that's what's happened because I got the same error message I did when two of us at work would log into the same account at the same time (joint account for a shared project). And then the same password I've had forever won't work when I try to log back in. And I tell you, after the work I put into the blog post yesterday, which vanished into the ethers, except for a few sentences, I was ticked, ticked, ticked. If someone's been in my account for other reasons, they are in a lot of trouble and I am not.

Still unsure about Enbrel. I asked today, and it does not increase the risk of gyn cancers, just other cancers. I know other people say they're healthier on it because they have an overactive immune system that attacks everything. You should see me waffle when I have to make bigger life decisions!

Driving to the hospital today, I looked at every business we could as we passed and estimated that about half lacked disability parking at all (many small businesses, thirty minute drive) and about a third to a quarter were completely inaccessible. There's something to be said for new construction! I still don't think I could get into Starbuck's by the hospital (my parents gave us a gift certificate). There is one curb cut at the end of the lot, but there's a big concrete planter-trashcan by the Starbucks that I don't think I could steer around. There are other places I can get into, though. I have traveled to al ot of other cities and states and don't think this is atypical. In fact, it may be more accessible than other places, especially with a lot of new construction.

Friday, July 24, 2009

Glad I Had Surgery

I'm glad I had surgery when I did because there were pre-cancerous cells; the doctor called this afternoon. Nothing else needs to be done for now, but if I have any more bleeding after this stage (she anticipates I'll still have it in the next week or so), I will have to have a hysterectomy.

Dear body: seriously?! Stop!

A Little Humor

My father-in-law's comment last night when dropping off the kids:
"I don't know about this hospital--you looked a lot better when I dropped you off."

Not much pain today at all--just on regular pain medicine. Really can't complain. :)

And take that, Peter Singer. I feel back to myself--after having surgery. Having needed medical care increases quality of life. He fails to acknowledge the surveys that show people with disabilities rate their life quality far higher than others guess they would rate it.

Thursday, July 23, 2009

from Frida's husband

Frida is fine - as well as can be expected - and is now home. Lots of pain and nausea post surgery, but the pain is more under control now and the nausea has mostly subsided. Surgery went well; the growths don't look cancerous. No new bleeding issues.

Getting there was interesting. As usual, we were in rush to get out the door. After dropping off the kids, we saw the low air pressure indicator go off and were hearing a strange repeating noise. Yep, the tire was punctured and was losing air FAST; a large Allen wrench was jutting out of the tire. Fortunately, we were close to a Discount Tire, so we drove it there. They didn't have the tire in stock, but while I waited for them to put on the spare (which is ridiculously complicated on our mini-van), my dad picked her up to take her to the the hospital, and I fortunately was able to make it up there in time before her surgery.

She came home to a post card from Elizabeth. Thanks!

Tuesday, July 21, 2009

My Life Has Gone Down the Tubes

I feel like I'm at the bottom of a well, calling up. It's sort of hard to talk to people like this. I am emotionally exhausted, burned out, the candle's burnt at both ends.

I do have more to worry about, just a little. I had a pre-surgery test today and got a phone call a few hours but it's probably incidental. Hoping I don't have to have a bigger surgery a few weeks from now. The ramp was too steep at the radiology place and I was terrified my scooter would tip backwards. The office staff was hateful--then the technician who rescued me from the waiting room turned out to be a former friend from when our kids were tiny. Embarrassing to have her there, but I would rather have her there! It's not really the way I wanted to get reacquainted. She assured me of privacy.

I hate all of this. No one in "RL" would even believe me, well, few. Not that I need them to know, but I wish people would extend some patience, some understanding, some recognition why I can't do what someone is asking me to do.

I've learned who I can count on at times like this--those who see me and turn away or even laugh and those who offer comfort. There are a lot of good people, but there are also people who show their character, not that any of us are perfect by any means. I understand busy-ness, no question; it's the response that interests me.

Monday, July 20, 2009

Surgery Thursday

Surgery Thursday. Goodness, and it took a month to get the gallbladder one scheduled from when I really started having problems. At least that's less time to worry, which I never do...

Friday, July 17, 2009

Just more updates and another, umm... surgery

Vocational rehab will pay for a course so I can do medical transcription at home--while electronic medical records will eventually make this obsolete, for now there's still some demand and this will work for now (my sister's providing advice and help). This is something I can do to help with money; I can put in as much work as my disability will (or won't) allow without having to worry about losing a job or moving in and out of the workforce. I can take time off and do my other work, do more or less according to whether my husband has work and how much it pays. This also gives me some flexibility in terms of other life decisions, whether we have to move, etc. And it means not changing up our children's lives radically, paying for childcare or having them come home alone (my elementary school child is not mature enough for that). I don't have to worry about missing work because of medical appointments--I will have flexibility. Just as importantly, vocational rehab will also pay the coinsurance on a wheelchair or different wheelchair cushion. So I'm working on getting all of this set up.

Rheumatologist #1 thinks I may have had GB, that the symptoms match up and says that nerve damage to small nerve fibers might not show up, plus yes, people recover. But he also thinks I should give Enbrel a try, so I'm kind of mystified by the phone call the other day, unless he changed his mind because of my level of disability or thinks I really want it. I asked questions but I'm not sure they got answered, and I wasn't feeling well, though he spent a lot of time. Frankly, I'm confused. But regardless, I'll be putting off the Enbrel, because you can't use it presurgery and...

Now I have to have surgery next week. It's not optional, and it scares me witless because I tend to bleed thanks to the connective tissue issues. I called for an appointment Wednesday, had the appointment today, surgery will be set up Monday, sono on Tuesday, all lab work forwarded, surgery on Thursday or Friday, early the next week if there's any impediment, she'll work around our schedule. Not happy about this one at all. The doctor emphasized to my husband it's absolutely not optional but it has to be done even if we have to get a different doctor because of insurance (not sure of coverage). I can't possibly convey how much I hate this and yes, she reminded me I should have had this done years ago. Because of the bone/hip issues/possible labral tear the anesthesiologist won't give me Versed--that means the doctor can position me without harming me, but she warned me the prep is going to awful and since I freak out anyway, I think I'm starting to hyperventilate already and I think we can all see why I've postponed this nine years.

Wednesday I meet with the PM&R doctor and hope that he can help give some advice. The wheelchair provider has changed and I don't think these people know what they're doing, unlike the last woman. The woman on the phone said if I just need a cushion, they can just order that when I asked about fitting. Uh, no, tried that. I don't know the DME market and while I'm an expert on how things need to work for me, I don't know what products are available or how they all fit together. It sounds closer to direct sales with limited providers of wheelchairs and no real PT/OT. I think I need a wheelchair seating expert/clinic as an objective third party.

And so, I'd like to write about bio"ethicist" Peter Singer's lovely little essay in the NYT but haven't been able to bring myself to write about someone who thinks our quality of life is so bad we should just die so other, more healthy people can get surgeries because of their minor inconveniences.

I have written up much of a post on JFK's disability but haven't finished it yet. My body keeps getting in the way of cerebral issues right now. I hate my life right now but *that is temporary* and will be better in a few weeks. I am so angry about Peter Singer that I can't even think straight. My husband asked if Singer's going to have Kevorkian on speed dial when he gets infirm or disabled.

Tuesday, July 14, 2009

Drama in Real Life: A Reader's Digest Exclusive

I let both rheumatologists (former and current) know about the neurology appt. yesterday. Rheumatologist #1's office just called insisting I see him even though he's not my doctor anymore because he absolutely does not agree with the safety of me going on Enbrel. The nurse wanted to know whether I had already ordered it or started it. They said they can work me in in an hour today (no, can't move) or early in the morning Thursday--this from the office where it takes six weeks to schedule a visit for acute matters. So maybe not putting me on it last fall was not a matter of not believing me about the arthritis. Yes, I'll go in--it's probably important to hear what he has to say. Apparently he doesn't own stock in Enbrel.

Roller coaster.

Ride the roller coaster

Well, what the doctor said is not what the research says for the relapsing or chronic kind, but I'm not going to play bat-the-journal-articles around. I'm getting off that ride. The spondyloarthropathy and related pain are what currently disable me more than anything, and I want help with that. I'm not pleased re-reading through the Enbrel adverse effects again, but I am not pleased with living life on the couch either.

Monday, July 13, 2009

Yay, good news

The neurologist says I don't have nerve damage, which I'd still have if I had Guillain Barre--he thinks I was so weak because of blood poisoning/effects of that much bacteria from being that ill. So I get to cross one more specialist off my list again. My husband looked kind of queasy/squirmy during the nerve testing--they stick needles in pretty far.

My husband asked if this changes my mind about my internist. No, I was not to blame for not recovering after four rounds of antibiotics. I was really sick and not to blame for it. (Don't read this sentence if you get grossed out--incessantly coughing up copious green fluids for weeks was scary.) If he thought I were less ill, giving me reassurance and his evidence that I was and should be okay would have helped far more. Ultimately, our styles are just too different, and we just could not have worked together. When I started going out of my way to avoid him for routine problems, that was a sign I should have changed doctors. I still believe that he's a good person who cares about his patients; I still think I am a good patient who cares about my health and a good person who shows more consideration than most for my doctors' time and efforts. Whether I needed reassurance, whether I was experiencing drug side effects, or whether I had something more serious, I did not need blame.

Maybe some patients who are giving up and not trying improve with straight talk--I don't know. But I need encouragement. The doctor today was encouraging and not blaming, and I feel good about that. The dermatologist Friday gave me news that she said she knew I did not want to hear but she did not blame me for not coming in earlier, though I should have. Instead, she gave me help for where I'm at so that we can go forward without more damage, telling me at what point to come in at the future so more loss doesn't occur. That's encouragement.

I did call to get Enbrel set up. I don't know if this is a good idea or a bad one, but all I know is that I'm having very, very few good days. Saturday was a rarity. I'm sitting on ice packs just after going to the neurologist. I'll give it a try. I'll be careful--I will. It can always be discontinued if I need to.

Note: I looked up blood poisoning and sepsis and related diagnoses and don't know that I agree with that unless I had some slow-cooking version of it that the change in antibiotics reversed, but anyway, I was pretty darn sick with that infection, staggeringly sick, and it wasn't my fault. I'm glad I got better. You can bet if my kid or spouse or parent was that sick--not just the respiratory symptoms, but getting that physically weak and worsening, I'd have been fighting for better care. And I'd do the same for myself if it happens again. I'm not accepting blame anymore for what's not my fault. If there is something I can change, fine. But not for what's not my fault. I took my medicines, drank my liquids, followed directions, avoided others with illness (though I got sick again then from a nurse with a cold). It is beyond ridiculous to blame a patient for upper respiratory infections when many people had upper respiratory infections then.

I haven't had an upper respiratory infection in many months. It is not because I am virtuous or changed my attitude or have followed some obscure practices. It's a matter of weather and luck and avoidance and an immune system that's not already down from other infections or inadequate pain control (pain was less relieved then).

Sunday, July 12, 2009

How Long Does It Take You To...? housework?! How long does it take you to do chores? Which chores do you always want to do but can't ever squeeze in or do yourself?

In five hours this weekend, with three hours of help from the kids, I:
-loaded the dishwasher (I rinsed, my daughter had to bend to put the silverware and plates in)
-washed a lot of pots and pans that had not been done (four days is my guess)
-cleaned the sink and counters
-cleaned most of the half bath and master bath (not the shower or tub)
-picked up and sorted through some papers and put away a bunch of items that needed to be put away
-dusted the furniture in three rooms, though I couldn't dust lower shelves
-put in two loads of laundry and folded at least two loads of laundry that had been sitting out
-unloaded the dishwasher again
-I managed a shower by myself (sitting down for part)
The kids also took their sheets off and cleaned the upstairs bath and put a lot of their clothes and toys away while I was doing some of this, like the pots and pans and the laundry folding. My daughter helped me load the dishwasher while my son sorted and flattened boxes for recycling and wiped several of the counters. I taught them how to clean the downstairs bathrooms while I did it so that they could do the upstairs bathroom themselves, because it goes too long between cleanings, and they don't like that either.

Can I do this all the time? No! No matter how much I really want to. The planets lined up or something. And standing a lot is not the same as walking a lot--I did a lot of standing on my right leg to keep the pressure off my left SI.

The kids prefer doing chores together periodically rather than having individually-assigned chores on a daily basis--though it's been too long since they've pitched in (my husband tends not to ask for help, doesn't like to). Everyone does what they are physically able to do.

Because I am so slow now, the list above took five hours, with help. I had to sit down for some of it, like laundry folding. I also sat down in the bathroom to work since I have a chair there. How long would these chores have taken me when the kids were small? A few hours, without help. But I'm grateful that I could do some yesterday, and I should when I can. My husband was mowing, cleaning out the mice living quarters, vacuuming, taking out the trash, and doing the grocery shopping--he could not have done these chores and the ones we did as well yesterday. There would have been a choice between them: clean the kitchen or mow?, vacuum or clean the mouse habitat? That's why we were so far behind on the house chores--choices.

I am so frustrated that there is so much more I need and want to do that I can't. Like--clean the garage. Hang up my own clothes--this is often difficult for me. Work on photo albums--I miss this! Take items to the consignment store myself. Steam clean the carpet. Vacuum the window sills and blinds. Take the light fixtures and lightbulbs down and wash them (yes, really--the light fixtures have bugs and some of the bulbs are really dusty). Repaint the baseboards--I used to regularly clean them. Raid my husband's workspace and start a massive cleanout (well, this wouldn't be appreciated...). Do more of the grocery shopping myself. We don't have a fair workload between us, and yet I feel irritation at what's not getting done (it's often a choice between bigger projects or daily tasks).

Yes, I'm paying for it with muscle pain, but the severe pain episodes for a few weeks per month have left me mostly lying down and terribly, terribly out of shape for my condition. And now things are piling up again. I'm hoping I can do more than I have been over the coming weeks. My pain cycles haven't always been so long as they've been.

I had some remission of my pain this weekend. I still can't sit long because of my hip and ischial, but my SI's would let me stand up without wishing to collapse in a heap or circling madly and unable to actually accomplish anything. Today I just managed a shower and mixing up my own pancake batter from scratch (peaches and blueberries), but that's a lot better than I've been able to do some days recently. Friday was awful! We had to turn in benefits documentation in the afternoon and had to sit three hours to do it. Between that and the dermatology appointment, that was all I could do that day--all the sitting beat me down, and I was in such pain that I could just lie down at 5:00 and otherwise couldn't move until 11:00 Saturday. And then somehow did all of that--and didn't move until 12:00 today.

Friday, July 10, 2009

One Reason Not to Skip Dermatology

Wisdom for this week: don't skip your dermatology appointments. I now have scarring from relatively minor psoriasis where hair won't grow back in, though fortunately the area is not too huge and can be combed over. Yay, me, trying to save time and money by skipping one more specialist.

I don't want more of this, though, and hope I can keep it under control so more of this doesn't happen. Where I've lost hair from pain, that will grow back in. I'm in an endless cycle of new growth versus fallout from pain--when I made the appointment, I was panicky and had far less hair. Now I have more--which will fall out again from the pain the past few weeks.

I really like this dermatologist--without me explaining, she understands I can't follow complex routines and need the easiest solutions possible. So we'll hope for the best. My skin is a lot better with going wheat-free. I'd have done that a long time ago if I'd realized.

Thursday, July 2, 2009

Ramps and Bridges

I was thinking about how we don't have a ramp in front of the house, just one in the garage, so I haven't been out with the kids for their bike rides or walks in almost two years. We go other places than outside our front door when I want to go.

I did burn a bridge with my former internist this week and let him know some of how he made me feel and the consequences of that, sending him the documentation I sent to the neurologist. Predictably, we got the letter of doom today. That's okay. I feel better for expressing myself. I waited one year too long to do it, while still under his care and repeatedly enduring the same criticism for being sick. When a patient runs through four rounds of antibiotics for the same infection and a doctor is both unconcerned and blames the patient for it (his other women patients but not men patients also report blame), I'd say that another doctor is a better choice. I haven't been able to bring myself to go back to him for anything after he called the gallbladder problem a cardiology problem and refused to help. That was over six months ago. Still, missed diagnoses are one thing--people are human. The blame for what was absolutely beyond my control was the problem. I mean, blaming patients for getting respiratory illness and pneumonia? I avoid people who are sick! I hate being sick, hate it.

Why did I accept and internalize what he said rather than finding someone else? I guess anyone new is an unknown. I found my new rheumatologist from others who work with him, and he's just not like that. He's empathetic and good at what he does. My gyn isn't like that; my urologist talks fast but isn't like that. I always wonder when the other shoe will drop with a doctor. I liked my internist for a long time and recommended him to others even after he said this to me, telling me I was making myself sick, bringing it on myself, and that if I were more positive and more spiritual or something I would get well. Add that to a number of bad decisions after that based on such beliefs, and it was borderline malpractice.

And thus Frida attempts to enter a new mindset. From emails, insurance records, and my calendar, plus my memory of course, I was able to reconstruct a chronology of my symptoms with more detail than I'd imagined I could do. Who knows, maybe I can turn it into an essay someday, or a few of them, like Laura Hillenbrand's about her chronic fatigue.

My high fever is back with unremitting, severe bone pain in multiple places, feels like I have a stress fracture in my femur (I've had them) as the only symptom, while I am on day 8 of an antibiotic. I have a feeling I may need antibiotics for a long time. What am I doing blogging? There's nothing else to do except circle the house in pain, which I am doing a lot on foot, briefly pausing to rest on a chair or the bed, despite the extra pain from that, because I cannot bear being still (well, I am now for a while). Yet I can't *do* anything while walking around. I stop to do the dishes and start circling slowly again because I can't stand to do anything. It hurts too much to do something focused. I can't shower. I can't concentrate on paperwork. I haven't been able to sleep except in brief snatches the past few days. I can't follow movies, though the documentary on bears was interesting. When I'm sitting I want my hip and leg in one position.

I am bored out of my skull and sick of this. I am sick of being sick. I keep circling back to this post to add more. My mind is going, Dave. Daisy, Daisy, give me some pain relief, true, something something something about a scooter built for two.

Ableds are mean. I need crip friends right now. One relative regaled me with a story of someone with MS who will be at her house this weekend, who has a "positive attitude" about it and "you'd never guess she has MS" since she enrolled in a clinical trial for a couple of years and now shows no signs of it. She keeps asking me if I don't need to exercise more (hell, I'd like to, I'd love to) and telling me I need to "fight it with all the strength I've got." Conversely, I've learned fighting things with all the strength I've got makes me very, very ill. I can do it when I have to do something. Pacing works a lot better, and rest when I'm in acute pain. I am tired of her criticism. When I was in the midst of acute pneumonia, she told me to exercise more--she had acute pneumonia a few weeks before herself (I probably caught it from her), and she couldn't exercise then! I am dreading this weekend, having to deal with the MS patient who has the "good attitude" and cured herself through positive thinking and who just "goes and goes" and has a lot of energy and loves to cook and blah blah blah. Good for her, that really is great. But she's not sick right now, okay? I am. I am increasingly realizing that she is thinking of someone who is more disabled as having a negative attitude, while she sees people who are capable of doing more as "fighting it" and "having a good attitude." My husband's had a couple of talks with her already but I think needs to have a very long one.

Bursitis and X-Ray Changes

I have hip and ischial bursitis, thus a lot of my extra pain recently. The pain has an explanation! That part is good. It means that pain will go away again. I'm also trying a new anti-inflammatory patch that seems to help, though I can only use it in one area at a time. That is also good.

A plain film x-ray now shows damage to my hip and SI joint. I did not even show changes on MRI a year and a half ago, when the pain began to be so consistently intense, or on x-ray a year ago. Goodness. Not happy about that at all, though yes, it proves it's not my imagination. I think it was better not to have damage rather than inflammation, even if I sometimes had to argue about the pain level. I'm too young to have damaged joints! Grrr.

Wednesday, July 1, 2009

FDA Slated to Hand Out Guns Rather Than Hydrocodone to Chronic Pain Patients

An advisory panel to the FDA has recommended pulling Vicodin (hydrocodone) and Percocet off shelves because of the danger of overdose and liver damage.
I have a better proposal. Why don't we remove all drugs from the market because of the potential for overdose and for most of them, liver damage and other serious side effects? Once we pull the sleeping pills and antidepressants away from health care administrators and insurance execs, they might spend their time awake making good or at least ethical decisions and experiencing stress, guilt, and grief for decisions that harm people. Can't and shouldn't liver counts be monitored for people on serious meds for the long term? Mine are.

Hydrocodone is the drug I take because of the effects of anti-inflammatories on my stomach; many anti-inflammatories have also been pulled from the market. It makes living as opposed to existing possible, allows me to extend my time out sometimes and enjoy a day out, though I may be bedridden later. Why doesn't the FDA just hand out guns instead of hydrocodone? Or do they want us on stronger narcotics, like Oxycontin, or oh, oh, what's the one that starts with a D? Dilaudid? And morphine! They think suicides and overdoses will go down if they pull these drugs off the shelves? Yes, I have been suicidal from pain though have recognized it will get better again and I have tried to relieve it in other ways. Adequate pain relief makes life bearable.

So we'll have more people more drugged on stronger stuff up on the streets, because stronger drugs don't have any side effects. And, I know! Let's put all the arthritis people on the TNF inhibitors--they only cost $15,000 a year, paid for by the advisory panel (or wait, do they own stock?). Those don't have any serious risks! Or do they want us all smoking pot?

Ibuprofen also causes liver damage--let's ban that, too.

Let's also sign up the FDA advisory panel for clinical trials using themselves as volunteers for spinal surgeries following voluntarily induced disability. No pain medicine for you!

See also, "Guns, Not Hydrocodone."