Thursday, August 30, 2007

I want my hands back

Today (now yesterday) was a hard day. I was at library headquarters. I try to cloak as many symptoms as possible there. That passing for normal thing. I don't care so much at the branch because everyone there is kind of family on some level. And the rules of politeness between strangers are in greater play with the public.

Anyway, I used to type 140 wpm for regular word processing input. Ran up to close to 200 for data input. Sometime in the last year, my ability to type with more than two or three fingers at a time started disappearing. A sub worker commented recently. "How'd you get a library degree with only typing hunt and peck." I don't hunt and peck. I know where every key is. I'm probably the fastest two-finger typist I know. Bu let's face it, it ain't pretty.

At the meeting at HQ, when we were all in front of PCs, I was acutely conscious f the the young librarin next to me. Her fingers just flew. Mine stumbled. Because I miss keys a bit, and hae to go back to fix. It seems silly to complain about, but I do mind. I wonder if it will get much worse?

Then there's money. I hate change and do everything I can to avoid it. But part of my job involves a cash register...grr i can't even type this fast enough to finish this. post before the time I set to go to bed!

Another day. Still SOOO tired. Today I had my second pelvic ultrasound in 6 months. Ick. This one was an enormous improvement over the first. The technician was a woman. I'm convinced the internal probe (aka the electric cucumber) was smaller. Or maybe what was wrong has suddenly improved? It was far less painful.

I still wish for a modicum of dexterity back. I don't have to do origami. But not to fumble so endlessly! Pretty please?

Wednesday, August 29, 2007

to every thing

Started Tuesday. I really was feeling good for about a week. I planned to do a post saying, see, I'm not whining! I still have to make a note of it so I don't forget it can happen. Whatever sucker-punched me last night did not magically disappear this morning.

Wednesday. Left leg still feels like somebody tied a few knots in the ligaments or something. Stretching has an effect for about two minutes, and then it's right back to cramping and aching. I'm putting it down to MS--I didn't fall or anything, it just seized up. Meanwhile more medical notes:

Got a letter from the new primary saying that my blood results were normal except for high levels of calcium and sodium. "Please drink plenty of water daily and we will recheck at next visit. HBA1C test is normal. Negative test for diabetes."

I guess this is sort of good, since the sugar level last test was what worried her. Also, getting a form letter with a stamped signature means it is obviously less acute than when I've gotten phone calls from nurses and doctors with test results. Since I NEVER leave an internist's office without orders for blood tests, i barely care she wants a redo on these.

She doesn't say to reduce calcium, which I do take. When my thyroid was removed (1997, I think. Should try to nail the procedure dates down--maybe a sidebar??), the surgeon had to remove much of my parathyroids. They regulate calcium absorption. So, he told me to take calcium. I was also told I was at risk for osteoporosis way back when I was pregnant and didn't gain enough weight (another long story). So I am cutting one dose of calcium per day experimentally. This playing pharmacist for myself stuff does get silly. The new internist made noises about not playing with dosages on my own. I am careful. I was asking her for guidance on when to take which painkiller. She basically said to stay away from the Hydrocodone. I only use it to sleep with intense pain, like a broken rib. Speaking of which...

I saw the pulmonologist yesterday. He said my PFT results were good for someone with asthma, but he wants to redo it in six months. He was very concerned about the fractured rib. When the baby internist called to cofirm there was a fracture, she was very offhand about it. The pulmonologist wasn't sure the PFT last week wouldn't still be impacted by it. He also couldn't believe I'd walked around with it for ten days before I got care. Another lecture on the evils of high pain tolerance. More about the lungs and the heart as well--did you know they are intimately related? Sorry about the sarcasm. I can never believe how many times I am given that talk. In addition, the chest Xray from June showed fluid in the lungs. It was possibly from the trauma to the ribs, but maybe also pleurisy. Of course I thought immediately of The Glass Menagerie and "blue roses."

The upshot is he wants another chest Xray. I plan to do it Friday before or after the pelvic ultrsound. At least I can get them done in the same place and time--as I fritter away the 8 hours of sick leave I actually amassed in July and August!

Pulmo-man also talked quite a bit about Serevent. Technically, Serevent did not make me delusional, sleep deprivation did. Serevent can cause insomnia. Some discussion of isomers and beta-receptors. He said that at some point we might try Xopenex, as rthat has an isomer stripped off. I was very grateful I'd paid a little attention to the Offspring's chemistry homework. I'm sure isomers were ever mentioned when I took chemistry, but at least I have a clue. Basically, I should keep my albuterol inhaler handy in case of a severe breathing problem.

I still don't take the asthma very seriously. He asked me if I get out of breath walking more than one or two blocks. I explained that I do little walking because of weakness in my legs. I will start trying to pay more attention as to whether my air intake is affected or has an affect.

K-one more moan groan. Mi piernas dolor!

Monday, August 27, 2007

Upside and down

Tat's Spot, our new dog. We adopted him yesterday. He is just about perfect--everything I wanted and cute as a button to boot.

However (you just knew there was one coming), the process of viewing dogs at three different shelters was exhausting. Saturday was just killer. It never occurred to me there would be that much walking involved. By the end of the day, I was too tired to make a decision about Spot, or look at another single dog. Yesterday, was very excited about picking up Spot and bringing him home. So the fatigue didn't hit until today. Even so, I was very excited about coming home to Spot. But coming home was about all I was good for. Making supper took superhuman strength.

I've actually been doing better. I was starting to think I'd crossed some magical threshold. Now, I can barely function. I'm hoping an early night will mend the ragged sleeve. Oh well. Try again tomorrow.

Wednesday, August 22, 2007

Estelle Williams I am not

I am utterly thrilled that I managed to go in the ocean on Sunday. First time since 2005. Water was 72 degrees, and relatively flat for California. The Boyfriend helped. I no doubt looked ridiculous going in with a cane, but it got me past the breakers. I may try again this coming weekend without the cane, if the weather continues copacetic.

We went to the beach with our friends David and Eric. They brought an umbrella, which made a huge difference in my ability to stay on the beach. Mind you, we still went at 2:45, and left at 5:00. Still got a little more sun tan I needed. Not enough sunscreen--more next time.

I also found out I can take an aquatic exercise class at our local Y through the MS Society. I think I will give it a try. I will have to go in to work an hour late on Wednesdays, but that's doable. Then I will go every other Monday, when I'm off. I still can't convince myself to go back to PT in Santee. There really didn't seem to be much benefit, and getting there and back was exhausting. I'm wondering if I can commit to doing the videos my disease mgmt folk sent. Boyfriend is doubtful I will do it. Well, one thing at a time. I am still considering the counseling via the MS Society...though no idea how I can shoehorn that in...maybe would qualify for FML? quiene sabe.

Tuesday, August 21, 2007

pfft, puff, PFT

I finally had the Pulmonary Function Text ordered last February. It was a bit more advanced than the pre-employment one I failed last November. Remind me to type up that unappealing little scenario one of these days soon.

When I say more advanced, I am mainly talking about the equipment, but also about the number of tests. I was in a "plethysmograph, a sealed, transparent box that resembles a telephone booth, while breathing in and out against into a mouthpiece. Changes in pressure inside the box allow determination of the lung volume. " Thank you, Medlineplus.

The Pulmonary Function Lab was high tech indeed. I looked at some of the pretty colored graphs the computer displayed wen I finished some of the tests. The technician, Sarah, was very nice, explaining everything very clearly. She didn't really tell me anything, of course, being a professional, but she made mostly positive noises. Of course, that may have just been that I was able to perform the tests correctly. I did much better following the directions compared to last fall. I know I did terribly in the doctor's office in February. Of course, that was when nebulizing didn't really help. I keep thinking maybe I have a variety of asthma that just doesn't respond to albuterol.

One thing I pointed out to the Boyfriend. On the report I brought home from Thursday's primary care appointment, under allergies, it lists Serevent, and lists the reaction as "Insomnia, psychosis." He had said it was never spelled out to him that the psychosis was a product of the Serevent. He thought it might have been the MS. That didn't jibe with anything the doctors had told me, or that I'd read.

Mind you, "Certain prescription medications such as steroids, anticonvulsants, chemotherapeutic agents, and antiparkinsonian medications may also induce psychotic symptoms." McFox's Multiple Sclerosis Pages Yes folks, albuterol is a steroid.

Mind you, McFox doesn't say where he got that info, and there's no authority of any kind I can find on his site...maybe I'll do some more research on this sometime...

Thursday, August 16, 2007

the new primary

Notes for Millen, 8/16/07
Here's my pre-visit notes, below. I scrawled on the bottom "arthritis, asthma, counseling." Im trying to think about the visit without having emotion color it to much. The doctor definitely has clinical detachment going for her. She had gone over my chart, and seemed to feel there was no worries.

When I explained that I am very nervous about medication changes due to the thing this spring with the sleep deprivation and psychotic episode, she was kind of dismissive. I should be careful, but it was unlikely. My health history is literally littered with unlikely events.

She tried to recommend an antidepressant for hot flashes. I told her I have been prescribed antidepressants 4 or 5 times in the last 10 years, for sleep and mood problems. They never helped at all. Oh well. I need some time to process.
Stomach problems--diarrhea frequent 5/5-8/1. Repeated viruses? Really bad in June--daily, Immodium. Seems to be resolving finally. Still some loose stools, but less frequent.

Pain in lower left quadrant since December 2006. Tender when doing PT. Recently some pain in lower right quadrant--fleeting.

In June, Poast said stomach problems could be MS, and to return in 2 weeks for follow up. First avail appointment with Millen was 2 months. Thought I should establish relationship with you. Toughed it out. Is it realistic to see you primarily, or should I go with one of the others? If so, recommendations?

Corey-Bloom not interested in discussing symptoms. In July, said to get a GI consult. First eliminate other problems.

Need new levothyroxine Rx.

Sciatica has come back. Pain and pins and needles, cramping. On hiatus from PT since bruising ribs in late May. Doing exercises/stretching at home daily. Real problems with fatigue. Knees weak first thing in the morning. Don't think I have the energy to do PT while working full time. Even using FML, it's exhausting.

Right foot--lots of spasms. Index toe curling independently. Some soreness still in the wound area, but not acute.

Lots of hot flashes some nights, particularly around menstruating, but other times as well. Hot flashes set off muscle spasms and neuropathy at times--very little sleep those nights. Already doubled up to 600 mg gabapentin at bedtime.

Email notes in advance? Sawires preferred.

Sunday, August 12, 2007


Before I went away, I contacted a peer counselor from my DMS (disease management system, I think). Here's what I wrote her tonight. I think just getting out heped a bit. I really do need to think about how to do things in the future. That being in a stupor thing just sucked. I am deeply bummed by how paltry my human interactions were over the wedding weekend.

I made it without getting sick--big yeah! Unfortunately, the utterly exhausted thing was crushing during and after. I tried hard to rest a bit when I could, but I did want to spend time with people.

The wedding was held on an island, which was gorgeous. Unfortunately, we stayed in a hotel on the mainland. Taking the ferry over each day tended to be as much activity as I needed. But then there was clambering up and down stairs and over rocky ground. I just barely made it. I did soldier on, but it took a lot out of me.

My sister had offered to get me a wheel chair, but I declined. I will use a wheelchair in an airport or at a convention, where there is a lot of walking, but generally, I'd really rather not. A wheelchair makes me feel a bit of a prisoner, plus being treated like a child. I'm sure those are not unique feelings. In any case, I don't think it would have helped much in Maine.

I ended up being so tired I couldn't even speak, so the time I got to spend with my daughter, sisters, nieces, etc., was kind of wasted. I was just in a stupor. I'm pretty disappointed, and not sure what I could have done differently. I used up every shred of leave I had.

Oh well. Are there fatigue management classes or anything? I guess I need to learn to make it clearer to people about what are reasonable expectations. Plus I have to learn to cope with lower expectations from myself. I'm sorry to vent all over you, but it has helped just to let some of it out here. My boyfriend says we should just have family come to us, because travel is so hard on me, and we live in such a beautiful place.

I hope you have recuperated from your travels. I'm both proud and terrified about starting another work week tomorrow.

Friday, August 10, 2007


OK, back from vacation. Semi-successful, as I did not get sick during the trip. However, the jet lag is hitting me hard. Plus, I was kind of upset that I only got to see Em for about 6 hours. And the wedding wasn't much fun, but that's the part I feel unseemly about. I'm kind of opposed to weddings, philosophically. Which makes it hard to eat, drink and be merry. Not that I drink at all any more. And being merry seems like quite a stretch. I will ave to write ore when I a less tired. Right now, lying down is all I can think about.