Providence Portland provides patient room service. I have a general menu with no restrictions, but the selections are all healthy (low fat, lots of chicken and salmon, lots of fresh vegetables and fruit). I can call any time from 6am to midnight to order food and they send it up. Almost everything on the menu is good (the Lean Cuisine mac 'n' cheese is nasty), and there are several things not on the menu that I can ask for (e.g., real butter). My favorite breakfast these days is seven-grain cereal (hot) with butter and brown sugar, with grapefruit wedges on the side. But there are lots of options. There are some really nice entree salads (including a Cranberry Harvest Salad) , as well as sandwiches and full dinner entrees. Dessert options are small but tasty.

( Read more... )

Current Mood: satisfied

I just took a real shower for the first time in a very long time, and it was SO nice! I couldn't have done it without the help of my own personal CNA, Dawn (she has specifically requested that I always be one of her patients when she's on duty and she takes very good care of me).

( PT )

Current Mood: contemplative

The main reason I haven't posted updates the past couple of days has been that I couldn't get into a comfortable position to type. Without going into too much personal detail, let's just say that certain parts of my body are getting more sensation, and some of that sensation is not pleasant.

Two days ago, in physical therapy, I got into a wheelchair and instead of sitting and typing, they had me propel myself down the hall and back. I never realized before how much work that is. Then yesterday, I was just too uncomfortable to do much PT at all, and I spent all day yesterday lying on my side. Today I felt better though, so not only did I get in the wheelchair (smoothest slide in so far), but I learned to do wheelchair push-ups (to strengthen my arms). Then they took me to the rehab gym where I finally got to try out the arm cycle. So I got some aerobic exercise in too.

( Bed problems )

Current Mood: awake

Before I came to the hospital, one of the problems I had was that every night, about 15 minutes after lying down in bed, my left thigh would seize up very painfully. If it was straight, I needed to bend it; if it was bent, I needed to straighten it. The only thing that made it feel better was getting up and walking around a little. Since I've been in the hospital, I've had diminished sensation in both legs, and I suppose you could say that one silver lining was that I didn't have that left thigh pain. Well, around 4:00am I started feeling that pain again, along with the same compulsion to bend my knee. The need was so strong, that I put all of my will into doing it and did it! I didn't fully bend it, but I did move it enough to feel that message back that I mentioned yesterday. I could feel my leg come off the bed a little.

( Toes Too! )

Current Mood: fresh

No interesting theme today, just an update.

I had a few improvements since my last update. First is that I was able to feel myself move my left toes. Before this, I knew it was working because I could see it, but I wasn't getting the "message back" from my toes to my brain. Now that message is getting through, so I can feel my toes move now. The concept of this "message back" is something I learned about by listening to the Radio Lab episode, "Where am I?" Radio Lab is a cool show in general, but that episode is particularly interesting. It's all about how the nervous system communicates with the brain to tell us where our body is. Little did I know when I first heard it that it would explain a lot of my situation to me.

( More new feelings )

Current Mood: hopeful

Providence Portland uses a wireless communications system called Vocera. It works a lot like the communicators on Star Trek. Let's say John Doe needs to find Jane Smith. He presses a button on the communicator hanging from his neck. A voice says "Vocera," and then John says "call Jane Smith." The voice responds "I think you said 'Jane Smith,' is that right?" John says "yes" and what Jane hears on her Vocera is "Can you speak with John Smith?" If she says yes, they are connected and can speak to each other.

( Beam me up, Scotty! )

Current Mood: optimistic

The bed I have is reasonably comfortable and adjustable. I've discovered that the best way to go from lying flat to sitting is to use "Knees Up" all the way first, and then use "Back Up" all the way, then use "Reverse Trend." (Trendelenburg) to tilt forward a bit. This is the best way to raise my back without slipping down the bed. Even so, I still feel like my butt gets stuck in the space between the back and leg parts of the bed and I can't quite hoist myself up to a position where I'm totally comfortable sitting in bed.

( Physical Therapy )

Current Mood: chipper

Yeah sure, I'm making small amounts of progress, but I have to face the fact that much (if not most) of my current condition may be permanent. It's not a fun thought. I definitely want to be able to walk and drive and be independent again. But if I had to lose some functioning of my body, I think I'd choose my legs. As long as I can still think and communicate and use my hands, I can survive without going insane. Considering that my ability to balance improves significantly every time I do PT and my limits in that are mostly due to pain from the surgery which will eventually subside, it's reasonable to predict that I will, if nothing else, be able to sit in a chair at a desk and use a computer or play a game. I have no problems with my upper body or with my brain, and I've always lived in my head too much anyway.

Don't misinterpret this to mean I'm giving up on the rest. But my improvements in my feet and legs from one day to the next are so far miniscule. It may still be early yet, but it's quite possible that I won't get that much better in that area. Lots of people before me have learned to live with worse. And there is nothing stopping me from being able to work in this condition. The problem is getting the job in the first place, but that problem existed before this all happened, so it just complicates the challenge rather than creating it.

( Physicality in online games )

Current Mood: relaxed

Providence Portland Medical Center is a teaching hospital. I haven't seen any student doctors, but they have an extensive student nursing program here, connected with University of Portland. On any particular shift, there are one or two students assigned to me, and I am one of only one or two patients they are assigned to, so it's very personal and we get to know each other. Even the full-time nurses though are learning things from my situation.

( Learning the Tech )

Current Mood: optimistic

Just thought I'd post a little description of what's being done to treat me and how I'm responding.

First of all, my home is a reasonably sized private room. The door has a curved curtain around it (rather than the bed). They're going to move me to a different room some time soon because there are some rooms with lifts in the ceiling, so as soon as one of them opens up, I'll get moved in. They're in the same hall though and all the rooms look the same, so I don't expect a big change from that.

( My bed )

Current Mood: hopeful

Today I was able to move more toes on my left foot and perhaps maybe my big toe a teeny bit on my right foot. More importantly according to Dr. Soldevilla (my surgeon) is that I was able to raise my left knee a little bit. He says my knees are more important than my toes.

I've been working with a physical therapist and occupational therapist. Today, I sat on the side of the bed and washed my hair with a special cap designed for that purpose. It required me to balance while massaging my hair and scalp through the cap, and the therapists were impressed with my improved balance and stability

My pain from the surgery itself is dying down. I've been taking Oxycodone for it, but I think I'll be able to reduce the dosages on that soon.

( Read more... )

Current Mood: blah

Instead of getting better, I'm actually worse, at least for now.

Until 4:00am this morning, I was totally unable to move anything from the waist down (though I did have some limited feeling). Although I don't remember it, I was apparently woken up in the operating room to answer questions and at that point I was unable to wiggle my toes, so the surgeon went back in but couldn't find anything. I had a CT scan the next day to see if there was a hematoma putting pressure on my spine, but again nothing was found. At 4:00 am this morning, I finally saw some intentional movement in my left big toe and some involuntary reflexive spasming (not painful) in both legs, both of which are good signs.

The physical and occupational therapists visited me yesterday afternoon and then again this morning and they said they saw a big improvement today. Also my blood pressure has been low until this morning when it's back up to normal.

( Read more... )

Current Mood: anxious

I'm finally having my surgery at 12:30 tomorrow. I can't wait. I know I won't be 100% recovered when it's over, but if most of the pain and discomfort go away, I'll be happy.

Current Mood: excited

For the last few weeks since I saw my surgeon, I've been applying for financial assistance from Providence in advance of my hospital stay. They finally came through last week with 70% coverage (I'll deal with the other 30% after I'm literally back on my feet, if not figuratively). Next it was up to the surgeon's office to schedule a date for surgery, and I heard this afternoon that it's set for Monday, November 9th, at 2:30pm. I'll have to stay over at least one night, possibly more depending on how the surgery goes. But ideally, I'll be able to go home the next day.

I can't wait. I want to feel normal again.

Current Mood: excited

Twenty years ago today, at 5:04 pm PST, I was sitting at my desk at MedAmerica in Oakland, on the 10th floor of a 20-story building. I have a vague memory of seeing something move outside the window and then I was in the (non-supporting) doorway and the building was swaying. When the shaking stopped, someone said something about it being a strong one but not "the big one." The only "damage" saw at that point was some books that fell out of bookcase.

I normally worked until 6:00 and I felt slightly guilty about leaving early, but everyone in the office decided it was time to go home so I filed down the stairway with everyone else. I saw one crack in one wall. I was surprised at that point that so little damage had been done after all that swaying. Then I got outside.

I started walking towards my bus stop and passed the building behind the one I worked in. It had previously been covered with bricks. The quake caused all the bricks to fall off, crushing cars below. That was the first hint I got that my experience was not universal. When I got to the bus stop, I think I was one of the first people there, but the crowd grew as it was discovered that BART had shut down. Miraculously, I managed to get a seat on the bus. I sat down and started reading, as was my wont. Other people listened to the news on personal stereos. One declared "San Francisco is on fire!" Another: "The Bay Bridge has collapsed!" I thought, Wow, what's going on?!

I got home and found my usually messy apartment. The only difference was that the medicine cabinet had opened and something had fallen into the bathroom sink. I tried to call home but couldn't get through, so I called my boyfriend and had him call my parents while I drove over to his place. We met up with some other people and drove around Berkeley to see if there was anything to see. We stopped at a hamburger joint where we sat outside and felt an aftershock.

That's about all I remember.

Current Mood: calm

Last night I dreamed that it was almost the end of the semester and I hadn't done any of the work for the classes I'm taking. (I'm not in school anymore.)

Current Mood: Anxious?

Nothing really to report. I'm waiting for my neurologist's assistant, Heather, to set up an appointment with a surgeon. She, in turn, has a call in to a surgeon in the same building as the neurologist, but is waiting to hear back from them. I just talked to her again and apparently what's taking so long is that they need to review the notes about my case before they decide to take the case. See, my neurologist's office has approved me for financial assistance so they aren't charging me for their services. Heather is trying to get this surgeon to do the same, so that's why they need to review the case first. She says that, once they do decide to take a patient, everything goes fast. However, if they don't take the case, I may have to go through Project Access and they don't have any surgical openings for a few months.

Current Mood: Impatient

I went to see my neurologist, Dr. Phipps, today and he showed me the MRI results. It seems that the problem is in my spine, as he thought, but around my shoulders, rather than my middle back as he has predicted. He showed me where there are two spots where there is no spinal fluid, and some black spot that he didn't recognize. ( Read more... )

Current Mood: contemplative

It's taken a long time but I finally got Providence to agree to assist with 70% of the cost of having the magnetic object removed from my hand. I got that done last week and had the MRI yesterday. I'll see my neurologist tomorrow to discuss the results.

( Read more... )

Current Mood: tired

One of the worst things about having no income is the inability to donate to public radio.

Current Mood: melancholy