Still Alive

Very tired. Moving slowly. Seeing a doctor on Wednesday because I can't eat.

Thanks for dropping by. Love you all.

Update

I haven't forgotten you. My hand is still stiff, I spen Wednesday and Thursday takng care of business and in the car. I'm resting but zonked.

Kate & I are having a good time.

Hi!

Here I am, safely in Sacramento.

Tired. Having trouble with my left hand. But here. At Kate's house. With one of my best friends in all the world. With Meyer lemon trees and a wisteria arbor. With wind chimes. Loved and cared for.

And needing to say thank you to all of you. For hanging in and waiting for me. For good wishes.

And for the incredible generosity that helped my kids pay for this move. There are no words that express my gratitude enough.

So these few will have to do. Thank you! There is no treasure greater than freinds. And I am a rich woman.

Moving Day

Saturday is moving day! MG will be moving from the assisted care facility in Anchorage to her dear friend's house in Sacramento, CA. She'll be staying there for awhile, until she's up and around enough, at which point the plan is for her to stay with my Grandma and my Great Aunt in Stockton. MG loves Sacramento and Stockton, except for the heat and the fact that they're not as pretty as Juneau (few places are, to be fair).

She'll have a laptop (another gift from Richard!) in Sac, so she'll be able to post more then. I'm thinking you may not hear from her until she's been settled a few days, though. At this point, she's still not sleeping much, only an hour or two a night, and so the work she has to do during the daytime is wearing her out. Hopefully that will be figured out soon. Sigh.

We're all looking forward to the end of this phase of recovery, looking forward to the next phase, which will of course have its own challenges to be met. One day at a time, as they say.

Thanks again to everyone for your devoted and continued support. It has meant a lot to me, and to Maya's Granny, and to Richard as well, even though he's not much involved in the bloggy world.

~J

Update

Hi All,

J here. Maya's Granny asked me to tell you that she's fine, but that she has been crazy busy with this and that, physical therapy and occupational therapy and dr. appts. and sleep studies and so on...so she hasn't had a chance to post, but she will hopefully be able to get to the computer soon. :)

Love,

~J

Errata

Masks:
You probably know that I use a CPAP machine when I sleep at night. And because of the long summer days in Alaska and the fact that my apartment had no curtains, I also use one of those Lone Ranger style sleep masks. It occurs to me that I look like the insect god when I sleep.

Amenities:
If you know anyone staying for a while in a hospital or extended care facility, among the things that will make life good for them, are:
books
CDs
their favorite herb tea
a real cup to drink it in
lemon drops or other hard candies to combat dry mouth
hand lotion
mustard and salt to "fix" the food
a small amount of fresh ground coffee to cover other smells
dried fruits
nuts
crackers

For Carol, and others wanting to get in touch with MG

Hi All,

Mom asked me to post instructions on how to get in touch with her at the Extended Care center for the next two weeks...her friend Carol left a comment asking how to get in touch.

You can email her using this page.

Select Providence Extended Care Center from the drop down menu, and she's in under the name Lilith Ward. She can't write back to you from this email address, but she will receive your message on a printout.

The phone really tires her out, so I'm not going to put her phone number here for folks to use. She can add that if I'm wrong. :)

Upnight Part 2

So, the cna who left me to "fall asleep".

After I had been up for a while and my legs had stopped twitching, I rang to be put back to bed. (And got some more sleep.) The cna and the nurse both came in. And, I said:

"What I want is to go back to bed, but I'm afraid to. If my RLS returns and I need to get up, I'm afraid that you will leave me in bed "to fall asleep" for 1 1/2 hours again, and I'll have to go through that torment again."

The nurse not only gave the cna what for, she reported it to the nursing coordinator.

We got two doses of Perkocet last night. However, I may be having a reaction with some other drug I'm taking, because they didn't last four hours each. The first lasted 3 and the second 2. I need the doc to amend the order again, to allow for a third dose (of 1/4 of a tablet -- it's not a lot) during the night if I need it. I wonder how long that will take. The nurse and I are hoping for today but I'm not counting on it.

Updatenight

So, here we are a few days later. The second night, same problems. About 12:30 I realize that my legs are doing Riverdance up the bed frame. Duuhh!! Restless legs. Had them for years, but I've been able to control them for the last three. One quarter Perkocet at bed time, another every four hours. But there is no way to get this cure now, because the nurse can't give me any drugs without doctor's instruction and there is no doctor available after 11:30. But, now I know what the problem is and can relax. Immediately that I pay attention to my legs, I begin to feel that the need to pee is not a need to pee, but a need to twitch! & then at 4:00 the attack ends, & I have the cna put me to bed. Just as I've drifted off, there is a lab tech to try for blood! This dialog is literally what I said.

"No!"

"It's doctor's orders."

"Young woman, has no one ever told you that to wake up a woman with multiple sleeping disorders just as she has finally fallen asleep two nights in a row is a capital crime? Run for your life!"

Which she did.

Two hours of sleep.

The next night, the nurse has told the doctor what the problem/solution is & at 9:30 brings me the Perkocet. I sleep for 3 hours & request the 2nd dose. Except it hasn't been ordered & it's past 11:30.

Three hours of sleep.

Yesterday morning the nurse tells the dr. the problem & requests orders for the second dose. 9:30, get my dose, sleep 3 hours & the nurse goes for the second dose, only to discover -- the doctor hasn't amended the orders. & it's now after 11:30*
So I decide to get up & sit out the attack. I signal the cna, she tells me she 2 people to deal with and then will help me up. 1 1/2 hous later & I'm twitching out of my mind, still in bed. My roommate & I both start to ring. The cna comes in & tells me she had left me on purpose! Knowing I'd fall asleep!

I dealt with that & will tell you later, but I have to stop & let my arm rest.

* I have now added a new sleeping disorder to RLS & apnea. Dr. Agnew's bedtime.

Night From Hell

Shall I start by telling you I survived? Yes, we will take the mystery out of the entire thing.

Friday, Saturday, & Sunday nights were rough because I kept waking to pee and not getting as much sleep as I needed. Falling asleep during the day. Low energy.

So, Monday the doctor gave me a new sleeping pill. I took it at 9:30. By 11, I had been up to the bathroom 5 times. Never much, but the need was there. By 3:30 I was in despair and asked for (yes, asked for) a diaper. Except that my mother trained me too well -- I can't do that. At 4:30 I had stopped needing to go to the bathroom, so knowing that my insurance only pays for me to be here if I go to physical and occupational therapy, I figured I would sleep till 10:30. Got the nurse to help me to bed, and discovered that the call light had fallen between the bed and the frame. Couldn't call the nurse to rescue it because. . .

Finally got it fished out, was starting to fall asleep, figuring now on maybe four hours of sleep, and in comes the woman from the lab to take my blood. When she told me why she was there and refused to leave, my hands under the covers turned to claws. Twice she stuck me, and twice the other person she got stuck me and all four times hurt and none, count them 0, got any blood.

By now it is 7:15 and the joint is wide awake and I know I'm not getting any sleep. So, up I get. And discover that the person who ordered this blood letting was the same person who ordered the sleeping pill. I have a little hit list. One doctor and two bad clumsy lab techs.

Oddly enough, I've had a great day. Go figure.

I Actually Saw These At The Time

Last year, Chancy at Driftwood Inspiration posted this lovely story about Exotic Gardening which mentioned a BBC broadcast I had seen when it was first aired in 1957 about the Swiss spaghetti harvest.


When I was in Philadelphia, the year Maya was born, the local paper ran an ad for The Taco Liberty Bell claiming the federal government, in an attempt to reduce the national debt, had sold the Liberty Bell to Taco Bell.

The full text of the ad read as follows:

Taco Bell Buys The Liberty Bell
In an effort to help the national debt, Taco Bell is pleased to announce that we have agreed to purchase the Liberty Bell, one of our country's most historic treasures. It will now be called the "Taco Liberty Bell" and will still be accessible to the American public for viewing. While some may find this controversial, we hope our move will prompt other corporations to take similar action to do their part to reduce the country's debt.

In a related release, the company explained that people and corporations had been adopting highways for years, and that Taco Bell was simply "going one step further by purchasing one of the country's greatest historic treasures."

I got this ready for April Fool months ago. This computer doesn't show the pictures, so I can only hope.

Update, Whopper

It worked & it didn't.

I was able to eat half the meal. The best food I've had in a month. But it didn't carry over. However, I was able to eat yogurt & pudding for dinner. & Dale brought me some freshly ground coffee beans to mask other food orders.

I feel a little more like, being able to blog and taking some control of my life. I still need help getting into bed, but I can figure out ways to help.

Sunday

So, here I am again. I think I will have Dale bring me some tea along with the Whopper! We don't have B King in Juneau, so I had the title wrong.

Yesterday was very tiring. So I took it off. Napped in my chair a lot. I know what would perk up my appetite for sure, and even though recreational pot is not illegal in Alaska, I don't think they can use it medicinally. & everyone I know who could help me is in Juneau!!!!!

What a sadness.

Anyway,so good to hear from all of you. It makea my day even when I haven't the energy to respond. One thing I've realized, that for all that I've lost, I didn't lose this or you. I'm still Maya's Granny!!!!

Slowly, Slowly

I usually type about 120 wpm. With my current numbness I am discovering just how much of that is with the left hand. So, it is the middle of the night & I've had 9 hours & decided to start on this & work on it all day off & on & get something done.


Very frustrating -- I was never good at hunt & peck. The next time I see my doctor, this is going to be item #1 to discuss. This had better be temporary!!!

So I saw the Dr. and, despite my fears, my hand will recover. Meantime, I am hunting & pecking & not saying much, because it it exhausting. I am having trouble getting enough sleep every night & food repels me. I eat in my room because other people's food gets to me. Open the tray, eat 5 or 6 bites, get it gone fast, fast, fast.

If anyone knows of anything to erase the smell of food let me know & I'll have my nephew, Dale, get some. T hank heavens for Dale! Sunday, on the theory that something I've been wanting may jump start some appetite, he is bringing a quarter pounder for lunch.

Busy Busy Busy

Hi All, J here. Mom is being kept very busy at the extended care, and they're pretty much wiping her out. Today she had breakfast, shower, occupational therapist, dr. appt (that included a trip to the hospital), lunch, physical therapist, something I'm forgetting, and somewhere, dinner. She was too worn out to get to blog. Tomorrow she has a very similar schedule, with occupational therapy, physical therapy, another dr. appointment, meals, on and on. She is planning on getting here to blog, but can't promise.

Her left hand seems to be numb. She spoke to her doctor about that, and the doctor said that is very common after heart surgery, and in 99% of cases, all feeling comes back within 3 months. Which is good, but not much use right this minute.

Her blog is keeping her motivated, though. Talking to you, and hearing from you, is one thing that she can look forward to EVERY DAY. Of course, she can also look forward to talking to family, but that's different. As you all know, family is family, and a blog is truly one's own. So she will be here when she can. She loves you, and the blog, too much to stay away.

What Shall I Rave About Today?

So here it is 9:16 in the AM and I'm trying to figure out what to write about today. My left hand has gone numb for some reason, which makes it hard to type. I have lots I want to say but not much skill to say it.

One of the major problems with the last couple of years was my job. I wrote about the job that I loved, Burnout*. How I left it and found another that wasn't as good a fit and I got very sick and left that job. It took some time to be well enough to find another job. The job with the teens I never intended to stay with for long because it was too easy but at the same time I felt like I wasn't doing a good job. I realize now that I was sick the entire 18 months I was in that job. And when it ended I couldn't find another job. Every application I submitted resulted in an interview.

I have never before gone more than 3 interviews without an offer. Now, 20 interviews. Not a single offer. Talk about depressed.

* This computer at the extended care won't load pictures or link posts. (J's note, I liked it for you, mom. :) )

So It Goes

So here I am. Not very bright and clever. But not lost. Working on a new keyboard, so clumsy. Much I'd like to say, but my hand goes to sleep and my butt aches. I wish my body felt better and worked better. Talking tires me, as does listening. I want to sleep and wish I had the energy to be awake. The hours pass slowly and I am beginning to realize that I am depressed. Dare I say it, Cheerful Charlie that I am? Depressed.

I have spent my life being optimistic and cheery and I have decided to let myself be unhappy here. I think that the more public my outcry the better it may do me, on the theory of not hiding a thing. So, prepare. For a while, I may just rant and rave.

What has this sickness cost me? Shall we start with my Hooligans? My soft, silky loves. Inky Pippin and wicked Merry? I will never again wake up with Pippin on my hip and Merry on my feet. Never. I feel so empty without my Hooligan boys. And they will never understand. One day I went out to breakfast and never came back. And they lost me and home and each other. They've been together since the womb, and now they are not. And I want to cry and scream and yell and carry on. My babies.

I know that they will adapt. One day they may not even remember me. But I'm not certain I'll ever recover. Yes, I know I will. But I don't feel like I ever will.



And I love them so much. I enjoyed their company and the soft warmth of their little beings. Merry cuddling on my chest and purring like all get along. Pippin looking me in the eye and knocking things off the desk. Very much on purpose. Sheer delight. How can I go on without them?

Well, Hi Again

I'm back! Tired and not very active yet, but back. With a computer available in the break room.

The notice says to limit to 20 minutes or less and I've been reading comments so I'm going to leave you for now, but I'll be back before the day is out.

Monday Update

Hi Everyone, J here again. Mom seems to be doing better every day, and is now ready to be moved back to the Extended Care Facility. I don't think she suffered a setback so much as she was moved before she was really ready the first time. And of course, the anti-anxiety drugs were no help at all. But over this last week, it sounds like she's made a lot of progress emotionally and some progress physically, and is getting her head wrapped around what needs to be done. And one thing about Maya's Granny is that once she has the challenge figured out, she tackles it head on.

One nice thing about the Extended Care Facility is that it has at least one computer that patients can access, and I'm pretty sure they wouldn't do that without internet access, so it's possible she'll be back to blogging herself soon! I know she'll at least be reading if she gets the chance. Perhaps I'm being premature in hoping she'll be back online soon, but I'll let you know if she doesn't have access.

So all signs are looking up, I'm happy to say. Mom and I have had much better conversations this week, which has been a relief with her off of the heavy meds. The 'mom moving fund' has been GREAT, and has raised $1,780 thus far. With our expense being $3,800, that leaves just over $2,000 for Richard and I, which is SO much more manageable than the numbers we were looking at just a few weeks ago. Again, thank you to everyone who has been able to chip in. And of course, thank you to everyone for your kind words and continued support. I'm hoping this will be the last you'll hear from me over here, and mom's voice will return where it belongs. If you need to find me, as always, I'm over here. :)

~J

Time for an Update?

Here we are, and it's a few days since I've updated you. Last you heard, mom had been transferred from the hospital over to the extended care facility. Well, that didn't last long. There was some sort of problem with some anti-anxiety drugs that they gave her, and so she was having trouble breathing, and they sent her to the emergency room early on Saturday morning. These things frustrate me, because of course I'm so out of the loop, I don't know what's going on. And the nurse in the ICU scared the hell out of me, telling me that mom's lungs and heart are in terrible shape, and making it sound like she might never be well enough to leave. WTF? That scared me, and some other things scared me, and it sounded like gosh, she might die anytime now, and maybe she had given up, deciding that her quality of life wasn't going to be what she wanted, so she was done. So I cried, and I called my grandma and made her cry, too. Grandma has already buried two of her four children, and would not like to outlive any more. So we got the whole family all worked up, and had a fairly surreal Saturday. Sunday, I called to see when they thought she might be taken off of the ventilator and be allowed to wake up, and instead of talking to the nurse in the ICU, I was able to speak to my mom, who was feeling MUCH better, was awake and alert and more chatty than she's been in over a week. I spoke to her doctor, who didn't mirror any of the concerns that the nurse the day before had shared with me. I'm still hoping to talk to another doctor about a more long term prognosis, and this is part of what is hard about being so far away...sometimes they don't want to give out information over the phone, and when they do, sometimes I don't think to ask a pertinent question until much later, and I don't know what the hell is going on.

I just called and spoke to my mom a few minutes ago, and she sounds great. She is more lucid and coherent than I've heard her in awhile. I believe this is because they have her off of the Paxil. She's asking for lemon drops, because her throat is so dry. I have a cousin in Anchorage, so I'm going to ask if he can bring her some. But more importantly, she is coherent enough to realize that although she has very little control over her life and its schedules right now, she would like to know what is going to happen, so she can give it some predictability at the very least. And she is planning to discuss this with her physical therapist and doctor, which is a huge improvement over her wanting me to call her nurse and ask her to go in and help her change her tv channel, which was how she was under the Paxil.

So that's the update, where we are now. Mom is doing well. Not as well as if her lungs were healthier, I suspect. But well. I'm not sure how long it will be before she is moved back to the extended care facility, and not sure how long between that move and her coming to California. But at least things are looking up.

And I thought of updating you on Saturday, telling you of all of my fears and how she might die at any time, but just talking to family about it was making me cry, and I hadn't told all of her friends and family yet, and didn't want folks to learn about it via the blog. I wish none of you would find out bad news, should it come, via the blog. But for today at least, the news is good, and mom's in fighting shape, looking forward to moving to CA and being closer to more family, though of course she will miss Richard and Kathy, and her beloved Hooligans, and her many, many dear friends in Juneau.

Good News Update

I spoke with the Nurse Practitioner who is in charge of my mom's case this afternoon, and she said mom is doing MUCH better. That she seems to be reacting really well to being off of the Paxil, and that she seemed chipper and upbeat.

She left the hospital today, and is being moved to an extended care facility in Anchorage, where she will continue to receive both physical and occupational therapy until she is ready to come to California. If you would like to send her an email there, you still can at the same website, just pick Providence Extended Care from the drop down, and remember to address it to Lilith, not Joycelyn. (Joycelyn is her middle name.)

You have no idea how relieved I am to hear that she is doing better. She was really resisting her physical therapy, not wanting to get up, not wanting to help the nurses to help her. She was like a different person than the mom that I know, and that was kind of scary. I was starting to wonder if something had happened with the anesthesia or something. But she got up and walked 4 times yesterday, vs. earlier in the week when they could barely get her to walk once. Oh, what a difference it makes to not be on medication that isn't helping you in the least!

So, it's still a long haul, I would think. She still has a lot of discomfort, and a lot of hard work, ahead of her. But it's good to know she's back on board with this whole thing, and feeling better. Even if she is still tired and sleeping much of the time. ;)

More good news: Richard received word that the estimate for moving mom's things to California was high, really high, and the actual expense will be closer to $4,000. Whew! We have received $1,310 from kind souls; friends and family that we know in person, and friends that we only know through the internet. Please know that your generosity is greatly appreciated, and has made a difficult load easier to bear. Not just financially, but also emotionally. Thank you all.

Mom updates

I've decided that I'm going to post updates below the 'hat in hand' post, in case people come looking for it. Updates on her progress will be just below. ~J

3/11/08 - There's an update below...
3/12/08 - Update on her surgery today...

Hat in Hand...

Hi Everyone, J here again. While I was in Alaska fretting about mom's surgery and trying to keep friends and family updated on her progress, Richard has been in Juneau figuring out how to get her things moved down to California. He and his wonderful wife, Kathy, have been going through her things and trying to figure out what goes to California, and what gets tossed. It's not easy to go through someone else's things and figure out what has sentimental value to them, and what is something that is just sitting there because the person didn't have enough energy to throw it away. I don't envy him the task.

Last week, the movers came, and assessed the cost of shipping her things...and it came out to almost $8,000. ACK! Richard is going to put this on his credit card, and it will take a long time to pay off. I'm planning on chipping in what I can, but I'm not sure how much that will be.

So many people have asked how they can help, if there's anything they can do to help make the burden a little bit lighter. You have all helped already with your well wishes and support, which has meant so much to us, and to my mom. If you are in the position to help out a bit financially as well, and if you're so inclined, we would definitely appreciate it. And if you would like to help, but you don't have a paypal account, email me at j_asregadoo AT yahoo DOT com, and I'll write back with Richard's snail mail address, which is where any checks can be sent. If you prefer paypal, here's a button to a page Richard has set up for mom's move fund.

Again, thank you all so much for all that you've done. You don't know how much it has helped us already, especially mom, who has loved hearing from you all via blog comments, email, snail mail, and flowers. (Dea, the first thing she said to me when she came out of her drugged state was to please thank you for the card. :) )

~ J

Update: Thank you so much everyone...thus far, we have received over $1,200 toward mom's move, which will help a LOT. You are too kind, and it means a lot to us. The support of all of mom's friends, and of our friends, has meant a lot. Thank you.

Surgery Update

Mom had surgery today, to put in an internal cardiac defibrillator (I think that's what it is called.) She was originally scheduled for this surgery yesterday, but she got bumped. She wasn't too happy about that, because when you're going into surgery, you're not allowed to eat or drink, and she was very thirsty when I spoke to her. So to have it all be for naught was frustrating.

Anyway, I called the hospital this morning to see what time the surgery was scheduled to take place, and they said she had already left. Yay, no more sitting around wishing for something to drink! I called back a little while ago, and I spoke to her. She said she's feeling a bit more chipper today, which is good news.

I'm still thinking she'll be moved to the assisted living facility tomorrow. I'll let you know how she's doing as soon as I know more.

Updated Update

Hi all, J here. I haven't written any updates in a few days, mainly because things have been pretty much the same, but also because we're all a bit down about the whole thing, and it's frustrating.

First problem is that they had my mom on Paxil, which is an anti-depressant (I'm sure I'll be seeing a bunch of spam comments now that I put that name in the post), and I think she isn't reacting very well to it. She's been giving the nurses a hard time, and in ways that are not at all like her normal self. The doctor took her off of the Paxil today, so hopefully in a few days, she'll be more herself. If not, then we have to try to figure out what else the problem could be. Just frustration and exhaustion? Another med she's on? Not sure.

Second problem is that she doesn't have a lot of energy, and is having trouble with the walking. It's such a huge part of recovery, so very important, but she just feels exhausted and worn out when she tries. Which is part of the hard time the nurses are getting.

She seems sad when I talk to her. She's lonely I know, and yet doesn't really have the energy to talk on the phone or visit. She's sleeping a LOT.

They found another problem, and so she's having another surgery on Wednesday. They are going to insert an internal cardiac defibrillator, I think. Much smaller, much less invasive surgery, but surgery nonetheless.

She's moving Thursday, probably, to an extended care center. I didn't want her to end up having to go there, but she's in no shape right now to move to California, and I'm wondering if she'll be ready in the next few weeks. Ugh. So stressful. She needs a LOT more physical therapy before she's ready to move on, and that's the best place for her to receive it.

I'm sure she would love to hear from you. You can email her using this page.

For now she's at the Medical Center, which you select from the drop down menu (actually, it's the default), and she's in under the name Lilith Ward, and her room is 278. I'm sure she would be OK with me putting that info up here. I'll probably pull it in a day or two. She's moving on Thursday probably, and then you can use the same page, but select Providence Extended Care Center from the drop down.

Sorry the news isn't better. It's not dire. She's doing ok. Just disheartened and not feeling well. Muh. I wish so much that there was something I could do to help her through this. Feeling pretty helpless right about now.

~ J