Look Out Networld; Mom is Online

I'm teaching Mom how to use a tablet. It's slow-going because of her condition, but she did a lot better than I thought she would. She gets frustrated that she can't search for all the things she wants, but she's getting the hang of searching. I'll keep her searching for a little bit and then show her how to journal using the tablet. The mic function is an awesome way for her to be able to journal without having to type. We set up an email account for her tonight and I'm hoping she'll be able to read this blog, maybe blog some herself, join meetup to meet some folks like her, and maybe even facebook. She tires easily, so it looks like she'll have a time limit of an hour or so for now. I think that might just be the way things are. Her eyes get watery when she gets tired and she won't be able to focus on the screen. But don't be surprised if you (eventually) see a post with bad grammar in the voice of my dear Mom. The mic function doesn't use punctuation. =P

Best comment of the night? When Mom was searching for low sodium cheese, she said, "5 used!?!...Amber, I don't think that's cheese!" 

They were cookbooks.

Surprise Dinner for Mom :)

Tonight, I played with a recipe and made Mom some yummy friend chicken (nearly KFC-flavor) that was low in salt. I know, shocked me, too! But it was actually easy and it worked and she loved it! I like making her smile. With potatoes and veggies, she had a balanced, low-sodium dinner that she actually enjoyed. Score one for frying everything in oil! =P

Her belly is still huge and full of ascites. Still leftover from the hospital stay. We increased her water pill dosages, so we ran out water pills faster than expected. I ordered them from the pharmacy, but it took them 3 weeks to get it to us, so she didn't have any for about a week. Her feet keep swelling every time she walks (the fluid goes to her feet), and it's putting a lot of pressure on her hernia. I think she needs to be tapped, but she's scared of it and it hurts, so she's refusing. The liver doc said get tapped or increase the pills, so we increased the pills. It'll take a while longer for her belly to go down, and she's in pretty bad pain, so maybe she'll change her mind about being tapped. We'll see.

We're only a few days away from meeting the new doctor. I'm trying to prepare things for him; medical histories, medication lists, referrals that need to be extended or changed or requested, etc. We'll see if he's willing to take on the challenge that is Mom. I'm hoping he'll at least give us the scripts for the meds she's running out of until we can switch to another doctor. Her old one is so incredibly spiteful that he's refusing to write her scripts. She still got her blood test at the lab, and they sent the results to the old PCP, and his nurse did call and tell us they had them. She said she's sending us the results from the past few tests, but I doubt it. That office is coming down with multiple complaints from multiple places - patients, insurance, and providers...I don't know how he'll stay in business for much longer. I really hope the new guy becomes our saving grace. I'm crossing fingers.

Other than all the insurance crap, life is pretty much the same here. It's the off-season for shows, so I won't be at any craft fairs for another month or two. I'm making custom orders, so hopefully that will yield more caregiver money. I'm also carving out a plan on how to reduce the clutter and clear out the house of Biogran's estate. I'm starting with the office. The living room is going to get crowded, but the office is going to get organized, and then the dining room, and then the living room. We have quite a bit to sell, and a lot of it needs to be researched and priced, so it'll take me some time. But I'm hoping it'll keep me busy for a while and keep us in caregiver funds. 

Big party at the caregiver's on Tuesday - it's a tri-birthday celebration. I'm hoping Mom will have a good time. She loves the caregiver and has become quite attached to the people at her church and is really trying to read the bible. Actually....several bibles. She has a few devotionals and different versions, large print, King James, New International...she's not sure which one to read, so she reads a little bit of each on any given day. She had an eye appointment and got glasses, and it's the cutest thing to see her reading with her glasses on the very tip of her nose and her eye mask on top of her head. I laugh every time. The glasses are only for seeing close up, so she puts them on the edge of her nose so that she can read and watch TV at the same time, but then she always forgets that an eye mask is not a normal fashion accessory. I have to take a pic one of these days. 

Don't forget to sign up for the walk. Tell everyone about it! I'll be asking for donations to get me to my goal after the new year, but for now, I'm asking people to walk with me. I found a wonderfully nice woman, a survivor of life, who's founded a non-profit sober house for women and children. I told her I'd try to help her any way I can. I don't have money or a whole lot of time, but I have a little bit of time and contacts. You never know what tiny thing you know or can do that might open someone else up to something amazing and change everything for them. I love seeing people helping other people, and I love helping them do it. So you'll be seeing ads for a family fun night up here soon.

And now, time for hot chocolate with a peppermint candy in the bottom. :)

ONLY TWO DAYS LEFT!!

Click the link above to register for the Liver Life Walk 2013 while it's FREE! You can always register after the 1st of the year, but why wait? I know some people don't know what their schedule looks like in May 2013, but I say register anyway and save yourself a spot. Don't miss out on free registration and FREE ZOO ENTRY while it's being offered on a silver platter!

Donations are always welcome! My personal goal is $1500 to raise by the time of the event. I can't do it alone, so help a girl out. Every dollar raised helps move research forward to find new treatments for my mom's liver disease. This means so much to me! If that one dollar sitting in your pocket could be one of the dollars that improves the lives of the over 30K liver patients in the US, what are you holding onto it for? That dollar yearns to be put to good use. It cries at night when you don't hear. Trust me on this. Let it do good work. Set it free to sponsor the liver life walk and make it's dollar-dreams come true!

I know that was corny. Did it work?

Christmas Shopping With Mom!

The last few days were pretty good. Mom made me laugh quite a bit. She's in so much pain and her stomach is doing summersaults, but she's been going with me and even cracking jokes. She complains THE WHOLE TIME. Yesterday, I lost her in Costco for 20 minutes. I had to pick up some medication and she had to use the restroom, so when she was done, she was to meet me at the pharmacy. But she forgot, so while I sat on the bench near the pharmacy, waiting for her, she was wandering up and down aisles trying to find me. She got distracted by a box of dried fruit and thought I might have used the restroom, so she took the fruit in there. So lucky she didn't get busted by an employee. A few employees helped me find her, and she didn't know what my problem was since she thought she was shopping fine on her own. She was so sweet, though, picking out gifts and making yummy desperate noises at foods she can no longer eat due to the salt content. I almost snapped a pic of her when she picked out a lovely bouquet of flowers for the caregiver. 

Today we went shopping for the kids gifts. We can't spend a lot this year, which makes Mom so sad, but that's not what the holidays are about anyway. I keep reminding her. We picked out some cute stuff the kids will love and kept it low cost. She was so distracted BY EVERYTHING in Target today. Usually, Mom pushes the cart to help her stay balanced and act as a walker, but she can't push by herself. I pull near the front on the side. I kept turning around to find I'm pulling the cart by myself and Mom's wandered into another aisle. I really want to put a leash on the woman. She wants every toy for the kids, checks every price, looks at every food product for at least 3 minutes at a time....she kept saying that this was like a field trip for her because she never gets to go shopping anymore. She hates that it's so hard on her to just walk around - she tires so easily. But she did it, and she got out of the house, and she likes the toys we got the kids. And she made me laugh quite a bit with the weird crap she says. She was really into those stocking stuffer dollar sections. Hahaha.

An anecdotal example of Mom's hilarity: On the way home, Mom was telling me about a book that her friend gave her. It has restaurant/fast food items listed with their sodium contents. She said, "I checked out that book, and BOY you wouldn't believe the CRAP we've been eating lately!" Made me laugh so hard. I still need respite (oh dear heaven, I need respite), but it's been easier the past few days. She's been *mostly* pleasant and we've been working on being nicer to each other. 

I hate HE. It's so infuriating. Nobody knows about this illness, so I can't just tell people she has HE and be done with it. I have to give a mini bio lesson and description of symptoms. It's so much like dementia that I just tell people that's what she has when I don't have time to outline the difference. She hates that I say that...it's like a personal insult to suggest she has dementia. I think it's fear of losing her mind and herself...but either way, when I'm looking for her in a large warehouse like Costco and describing her clothing and why I'd have to search for my 56-yo mother, it's 20x faster to say she has dementia than go through the lesson. It's something we end up fighting over. I'm tired of walking on eggshells and watching what I say in case it hurts her feelings. It is what it is. It's HE and mimics dementia to the point where I think it IS dementia. Dementia is like a symptom (a group of symptoms, really), but not an illness. The illness (the cause) can be a hundred different things, and in Mom's case, it's HE. I know it hurts her feelings, but I'm really very tired of the "make sure you tell people it's not from alcohol" and the "make sure they know it's not Alzheimer's" and the "but this time I'll remember" or "I'm not in denial about the HE, but it's not all in my head." This is life for us now. She forgets stuff. She gets confused and lost easily. She gets scared easily. She can't follow simple directions. That's not ideal, but it's life and we just have to accept that it happens from time to time, handle it when it happens, try to find ways to improve her cognitive function, and keep living through it. It's like she's lost her legs and is in a wheelchair but gets mad if you mention the chair or moving her or that she needs to use the big stall in the bathroom or that she can't reach stuff on the higher shelf. I guess the problem here is that I've accepted her loss of function and her diagnosis and she hasn't yet. I realize it's much easier for me to do that, and in her vulnerable state, it will take even longer for her to accept it. I'm trying to be patient, but she does start fights over things like me telling the employees that were helping me find her that she has dementia. 

We can't change the medical group retroactively, so we don't have a doctor for Mom until January. The nice thing is that a lot of the specialists she sees now are in the new group, too, so she won't be changing *too* much. We will still lose her liver specialist because he's moving to another hospital and it's much too far for her to make that drive. But another one will come in and hopefully be just as awesome. If not, I have a great referral to one south of us. She's still having problems eating and is experiencing a lot of nausea. She keeps shaking and says her bones are frozen, and then asks for ice water. I give her cold water, but I'm not giving her ice when she's literally shivering and says she can't get warm and turns up the heater. Otherwise, things are the same. Keep on truckin'.

New Doctor, Old Drugs

So after many conversations today, I do believe it necessary to procure a handsfree headset for the house phone. Or have it surgically attached to my head. Whatever the cheaper option is, let's go with that.

The doctor's office called and said that they hate us so very much (how dare we complain when they won't do their job!) that they refuse to treat her or write prescriptions even to get her through the end of the year. They tried having a conference call with the insurance company to get Mom a new doctor. It was the doctor's wife (yes, the same hostile woman who hung up on me) who tried conferencing with the insurance company. Mom told them that if he wasn't going to be her doctor anymore, she didn't want the doctor's office on the phone to know her business and that she'll talk to the insurance company sans conference call. GO MOM!! I had to laugh at that - my obstinate Mom is still in there and ready to kick someone's booty. Since she is confused, stressed, and forgetting everything, she told them to talk to me to work it out. The insurance company called without the doctor's office on the line, and since we haven't seen this doctor this month and he's refused any kind of service (again, I cannot sufficiently express my dissatisfaction, frustration, and outrage at the ridiculously unprofessional way in which this office conducts themselves nor my shock at what a BAD doctor he has become over time..simply disgusting), we may be able to get the insurance company to retroactively change her to a new doctor effective December 1st. If not, we'll have to wait til January 1st, which means that Mom has no doctor to name during the next two weeks. If she has any issues, we have to go to urgent care. Same with meds - and urgent care may or may not prescribe them. 

The good news is that I've finally gotten through the maze of the insurance company's website and downloaded the formulary for 2013. The only drug I don't see covered is any sleeping pill of any kind, but since they are so common, I'm sure I must be missing it. It's 240 pages long, so I'm sure I'm just not looking in the right place. I've tried searching various drug names, sleep aid, insomnia, etc, and nothing. So I'll call them again and make sure. It also has lots of helpful information as to how we can ask for exceptions. For example, we can ask for an exception with her migraine medication. She must take brand name because generic does not work on her at all. Brand name is a higher tier, which means it would cost more, but we can ask for an exception to be charged at the lower tier, since it medically necessary and not by choice that she is restricted to name brand. It also looks like some of her meds have dropped tiers or that generics are now available - which means cost savings for us. I have no clue who told her that her liver meds weren't covered or that they'd cost $4K/month - that's insane and I have a hard time believing that anyone told her such things. However, she got this stuck in her head and has been weeping so much that she's caused her stomach to cramp again and she's moaning in pain in bed right now. I think we need to get her back on buspar. She was having fewer crying spells with it. The anxiety is going to kill her before the liver disease has a chance to.

The insurance company was genuinely shocked at the behavior and attitude of Mom's previous PCP. The rep told me that she completely understood that we'd need a new doctor because she has never spoken to an office as rude as this one. She said she was only trying to figure out what happened, and they were so rude to her that she wanted to hang up, but to help my mom, she didn't. I got a good laugh out of that. It's vindicating to hear that other people have the same problems with this office. Since they blamed me and called me names (btw, his wife said I'm a bitch, but we already knew that, and their actions were causing physical harm to my mother, so you're damn straight I'll be a "disagreeable woman"), it's a relief to hear that everyone else who deals with this office has the same problems. It allows me to put it in perspective. It's very difficult sometimes to decipher if I should be sweet and nice or persistent or demanding. It was very difficult for me to tell this doctor, who we'd been seeing for over a decade and previously loved and regarded as an excellent diagnostician with a generous heart, that he was not doing his job. Sometimes, as caregivers, we're told that we need to stand up to doctors who pass us off and don't treat the ill. That the squeaky wheel gets the grease. But it's terrifying to think that your squeaking led to your loved one not being treated. That I pissed them off by speaking up and made things worse. I hate the idea that this doctor is treating patients with this same attitude and lack of care, but I needed to know that it wasn't *me*. 

I hope the new doctor lives up to his reviews and is willing to take Mom on, or at least to maintain her until we find a doctor willing to try to *help* be healthier and live comfortably for however many years she has left. As sick as she is, she's only 56 years old, and other than the HE, she doesn't have anything life-threatening. I've always said that my mom doesn't get the illnesses that kill you - she gets the ones that make life suck. The kind where you're in pain or limited in some way, but it just won't kill you. That's not what G-d had in store for her, for whatever reason. So, HE notwithstanding, she could live for another two decades as long as she has a doctor that actually treats her. It would be marvelous to find one that wants those years to be comfortable.

No Meds for Mom in 2013?

We've been going through this doctor switch for a few weeks now. Quick recap: her PCP literally gave up on her, so we tried switching to someone new for an interim, but he wouldn't even see her, so we had to go back to the worthless doctor to ask for prescriptions, and now the insurance company told Mom that her liver meds aren't covered in the new year.

I can't decide if I'm shocked or not that the doctor we tried to switch to wouldn't see Mom. On the one hand, she's complicated and we did read a review on this particular doctor which said he did this before. On the other hand, I'm almost certain it's illegal and I know it's morally repugnant. He came in to the room, said he was sorry that he can't help her and to go back to our old doctor. I told him we *can't* go back to her old doctor as he refuses to treat her. He said he doesn't have time for all her medical problems and to go back to her old doctor anyway. In the meantime, Mom needs meds that have run out, and no doctor is writing prescriptions. Frankly, all this makes me glad I go to a free clinic. (Which, BTW, the doc that refused service to Mom has a low-income clinic, and yes, his office is mid-ghetto.) We have a switch set up for January 1st to another new doctor, but he has good reviews and I'm hoping he will at least keep her stable until we find another doctor willing to take her on. The one I prefer is willing to, but Mom doesn't want to drive 27 miles to see her. I think it's worth it, and may be our only shot at someone who will help her and actually care how she feels.

After this blog, I'll be calling the insurance company...again...The instructions they gave me to look up the drug formulary for 2013 were not quite right. I couldn't find anything like what they were describing on their website, so I'm going to call and see if they can't walk me through it. They're very nice on the phone and try to be helpful, but they get confused easily. Which ought to say something about insurance policies - if they confuse their own employees, how are patients supposed to understand their rights and limitations? 

On the bright side, we have about a month's worth of caregiving left in the fund for now. A gift from family, the last few shows (not much profit, but it's something, and I used the iPhone that was gifted to me with the card reader for the first time!) and the few t-shirts I've sold thus far give us enough to hold out until about the second week of January before we're out. I'm hoping to sell more things before then. I have a few orders to complete before Christmas, so that will help get us another few days.

On the less-than-bright side, I'm so headed for burnout. Mom's incessant babbling - about nothing...I could go with it if her conversations had a point, but they don't...they're just words strung together, sometimes without a topic or even nouns - and her constant forgetfulness, the constant need for *something*, the lack of a half-dozen of me.....there's just too much to do and it's getting to me in a big way. I need respite, and I don't know where to get it. I contacted someone who might be able to help find me something. Hopefully I'll hear back. At this point, I'm jumping every time she opens her door (she refuses to let me WD40 the hinges that squeak so loudly) because I know she's going to come out and irritate me or ask for something I can't give her or insult me six times over. Generally, she's putting me in a fowl mood and I'm wanting to run to Mexico. I guess that's my barometer; if I feel the need to run to Mexico, it means I need respite.

Appt today!

Neuropsych assessment today. Waiting room time means I can finish some orders. Hope this lady can help us figure out what's up with Mom! Assessment leads to testing and testing leads to diagnosis and diagnosis leads to treatment!

Loving the Liver!

Two very positive things to talk about today! Mom's latest liver appointment update AND register to walk with or sponsor TEAM KATHY at the San Diego Zoo! Let's get straight to it, because I have blankets to knit. 

Best Doctor's Appointment Ever!

And it was a foot doctor! Sorry to get your hopes up, but at least this appointment today was quick and easy and we were told that her feet are healthy. No neuropathy, no drop foot, her muscles are as sensitive as they should be, and the swelling is from the ascites. The freaky nails are likely fungus, and the doc clipped them for her. I made Mom laugh when I told the pediatrist that her feet scare children. :) It was like a mini pedicure, and Mom said all she needed now was to get her toenails buffed and she'd be set. It was a pretty good day today. I got her laughing quite a bit, and we went to the bank and a lovely lady at B of A walked her through her register and helped her make sense of it. She was so patient with Mom! It was awesome. But we did get the mail today, so Mom's pondering over the blood test results that came in and the doctors are charging us separately from the hospital, so we have bills that should have been covered by insurance. She's been babbling for almost an hour on the cell (as I type, she's on speaker phone babbling...she just needs someone to listen to her...she doesn't even really need me to respond, lol) about what she got in the mail and what the different things on the blood test results mean. She seems confused as to why she has so few pages of results when they drew so much blood. G-d bless her. "They took 11 tubes of blood and that's ALL they did with 11 tubes of blood?!?"

After speaking with the clinical psychiatrists, it looks like Mom needs "neuropsychological testing". The term "psych eval" is vague in the shrink biz, which is why the group kept telling me they don't do it. Now that I know what I'm asking for, I think I can manage to get it for her. We need to rule out psychosis so that her insurance will help us with her HE, and it'll also give us a better idea of what's going on and if it's psychological or "organic" (i.e. more mental or more medical) and knowing that will give us treatment options. Speaking to someone who was actually helpful from the insurance company was a breath of fresh air, and he said that she would be able to get cognitive rehabilitation. I'm trying not to get my hopes up, but that sounds better than chocolate to me.

Also, I'm putting in a bulk order for GO TEAM KATHY t-shirts. They're $16 +tax (and shipping if necessary, but that'll be just a few bucks, nothing fancy). Proceeds help pay for my mom's caregiver expenses. We're running low on funds, so even if you don't want a shirt, please pass this along! If you'd like a shirt, please email me [birdcage_99(at)yahoo(dot)come] the size you need so that I order enough of all sizes and your contact info. I take cash and paypal (paypal takes everything and you don't need a paypal account!). Thank you for any/all help!! <3 If I can get the order in on time, I'll have them ready by this Saturday's show. Big Frog is rather efficient. 

We see the liver specialist Thursday. Let's all hope we get further with treatment and can figure out why she's stopped up lately. It's the holiday season, and things are moving slow with insurance, BUT we've got appointments for the liver specialist, urologist, neurologist, and tomorrow hopefully I can schedule some for a new therapist who works with elderly persons disorders and neuropsychological testing. It's all coming together. I really feel like things are coming to a head and we're moving in mud, but we're moving, and that's something to be very grateful for. 

One more thing: if anyone knows where to get some refreezable ice cube things, please gimme a clue. Mom's driving me batty with wanting ice cold drinks *all the time*. The ice-maker broke, and even when it was working, she dumps a half-gallon of water down the drain as soon as it gets slightly below freezing. She already drinks out of an insulated thermos (I bought her 6 of them from In-N-Out one year for her birthday), and it's still not cold enough for her. I'm hoping having these frozen things and changing them out would kill less water and keep her as cool as her little heart wants.

Bear With Me...

I'm juggling Mom, prepping for the next show, fulfilling orders, and fiddling with the storefront site. The storefront's a mess! But I'm working on fixing it. There may be more birthday vids coming - my wonderful cousin is making one every day this week. So cute! But the point here is that I may not be able to post as often as I have been lately.

Mom did cancel an appointment today. She was to have a test done, and it'd be uncomfortable and we're not sure part of it could be done working around her symptoms. The urologist wants to see her before moving forward to talk about options and if it's safe for her to proceed with the test, possibly without the instrument that would be rendered moot due to said symptoms. 

We've been invited to the caregiver's house for Thanksgiving. Mom is terrified of humans and public places right now...she's terrified of everything. But it should be fun and I know it'll be delicious! I'm so grateful to have her in our lives. Let's see if I have to force Mom out of bed tomorrow to go or if she'll go willingly.

Feel the Birthday Love!! :)

 

On top of these adorable videos, Mom got an ecard, two bouquets of flowers and a million phone calls! I knitted her a lavender-scented soap sock with a bar of moisturizing soap in it, and got her Denny's for dinner (she had a mad craving for country fried steak, so we broke her low salt diet for today only). THANK YOU EVERYONE for making this birthday awesome for Mom! Today was a great day for her, filled with love and smiles and giggles. She totally called me out on it (she said that this many people can't possibly remember her birthday unless I told them all to do it, haha), but she loved the attention and how sweet everyone has been to her today. It meant to world to her.

When dealing with chronic illness, people are often afraid and unsure of what to say or do. Sick people are sometimes depressing or make others think about their own mortality, and so they get ignored. Abandoned. That's how Mom has been feeling for quite some time. I'm so overjoyed that everyone today proved her (and me) wrong! She is NOT forgotten and she IS loved. Y'all gave her happy tears today. I have to stop typing or I'm gonna weep like a baby myself.

It's Kathy's Birthday!!

Monday, 11/19, is my mom's birthday. Show her some love and leave a birthday message! I'm sure it'll make her smile. :) 

fibered life at Home Again Consignments This Weekend!

I'll be out this Saturday with many other wonderful vendors selling handcrafted items and antiques. Be sure to come say hi and show your support! Mom's caregiver will be there making Jamaican jerk chicken sandwiches and beef empanadas (I'm almost positive) and her signature flavored iced tea, making our tent smell super-awesome and making me hungry all day.  =P

"The Monster" is my very scary lil cousin Aaron, who I love very much!I miss you Aaron! <3

The Documentary is OUT NOW! And I am Speechless.

My dear friends and family, I am at a loss for words. Literally.

I am asking all of you - everyone, everywhere - to watch this documentary. Please. 

HE*s Back: Hepatic Encephalopathy (HE) Patient Documentary | Cynthia Wade

Very Slow Progress

So far, Mom's making progress. It's extremely slow, but it's progress. She still has extreme panic attacks and weeps about things like what I'm going to do after she passes, and how she thinks G-d is punishing her by making her suffer, and how I should go live my own life and not have to take care of her. She keeps saying she tried to give my brother and I a better life than she had. She did, but right now her depression is so deep that she can't see anything positive about herself.

6 Reasons I Do What I Do Whether You Like It Or Not

I read an article today, and decided to rename it. Sometimes (too often) I find myself in the position of defending myself or my decisions. After reading this article, I realized it's true - I do waste too much energy on other people and worrying about what they think. They are not my focus. Mom is. I'm not above constructive criticism, but for those who simply try to make me feel bad and not actually do anything to help or offering any other suggestions, you go in my "not my problem" bucket.

Why I Am Who I Am

I'm putting two videos in here...the first is the trailer for the documentary that has only been released to medical professionals as of yet. It was released at ACG in Las Vegas and will be released to more medical professionals at AASLD on November 11th. It will be released to the general public after that. The second video is the reaction from the medical professionals who watched the full documentary in Vegas. I am very moved.

Also, the doctor's appointment went well today. We may have actually gotten a doctor on our side! It might take a while, but if we are persistent, Mom will get the help she needs. Please consider buying a t-shirt to help raise awareness and help us keep the caregiver. Remember that 20% of the proceeds help pay for my mom's caregiver and go to the American Liver Foundation. :)

Shortest Post Ever (In My World)

I was at Costco today (one of 8 errands this morning while I had the caregiver to watch Mom), and they had one of those big advertising thingers for their window treatments. They had a life-size cut out of what I assume is a technician who would be installing said window treatments. They also had a man standing there, wearing the exact same clothes as the cut out...and he moved. And I jumped. I thought he was a cut out. Then I laughed at myself so loud in public that people probably thought I needed padded walls. They may be right, but I said to myself, "Oh my GOSH, I need a NAP!"

Yep, I'm that tired. I had to draw a boundary today and go to my room and lock the door to take a nap because Mom couldn't stop babbling when I attempted the nap in the living room. I did get about an hour's sleep, then slept through an alarm and three text messages. I'd love to blog for another hour, but no. This is what you get. We're alive. We're going to bed. G'night and have a good morning.

Home Sweet Home

Mom was discharged from the hospital today. She came home just before 7 pm. The doctors were unable to determine if what she had were seizures and unable to determine why her mental state is so diminished. They suspect that if the episodes were seizures, they were caused by her dependence on xanax and that the hospital cut her off cold turkey. They can only guess clinically at this because there are a lot of reasons for seizures to happen and she didn't have any after they started giving her xanax. They want her to get an EEG to confirm if the episodes were seizures or not, and follow up with her regular doctor and hepatologist. They want other things and sent her home with prescriptions, but as I don't have her discharge paperwork, I don't know what those are. I should get it tomorrow. 

Jeopardy

Today's hospital visit was basically like an episode of Jeopardy; short and full of useless information. 

No info from the doctors, nothing useful from the nurses, nothing reliable from Mom. Very little improvement and she's no closer to coming home. At least she's not doing worse.

Whatever They Were, She Had 3 of Them

I tried to use today as a rest & recovery day. I slept in, took it easy, and tried to rally my immune system after the last few days of testing it. I know Mom's mood swings are swinging like pendulums, so I tried to take advantage of her hate-the-daughter mood before she swung into the needy-mother mood.

It happened faster than I thought. She called and told me she had had a seizure. She doesn't remember it and that scares her. She doesn't remember much, and isn't making a whole lot of new memories, but she can remember that her memory is failing. She's in a lot of pain, she has a massive headache, and her belly is huge. 

When I got to the hospital, I was informed that she had had three such incidents, but they don't know what they are. The description the PCA gave the doctor (complete with demonstration) made the doctor think that they could have been seizures. But only the PCA saw all three. The nurse and doctor did not. This is because they were very short-lived incidents and the PCA is what's referred to as a "sitter". They literally sit in the room unless they have to go get something for the patient, and then they come back into the room. The nurse monitors several rooms and the doctors only make rounds twice a day unless something explodes. The incidents as they were described lasted mere seconds, which was not enough time for the PCA to get the nurse into the room. Mom woke up immediately after each incident. They said that her arms were stiff and pointing slightly in front of her and her head was shaking and swiveling like she was dizzy, but she was unresponsive during the episode. She's been complaining about being dizzy all day and is a serious fall risk.

They gave her a CT scan of her head. We're waiting for a neuro consult, who will likely order an EEG. Without these test results, we don't know what's really going on. The medical team doc says that whatever this is, it isn't HE. They didn't run the CT scan til about 9 pm, so I'm assuming I won't hear anything until tomorrow or maybe even Monday on those results. The East Campus (the hospital she's in) is considered sub-acute. This means that she's too sick to come home, but not sick enough to be in the main hospital. It also means that they don't necessarily hurry and tests, results, consults, and the like are considered important but not very urgent. 

When I first got to the hospital, she was....indescribable. She had zero idea where she was, what she was doing, or what she was being told. She was physically fighting with the PCA, who was trying to help her. It was sad. I could see the PCA was trying, but she doesn't have a clear understanding of how to treat people with mental defects. She kept yelling at Mom (Mom was pulling on her cords, trying to rip off the O2 monitor and even biting at the connection). I told her that it's not a hearing problem; it's a comprehension problem. Yelling won't get her to do it. In fact, it just triggers stress and that makes her brain function drop even lower. Luckily, she wasn't there long, because it was shift change. She let Mom lay in dirty sheets, and I don't like that. The night PCA was wonderful - even reminded me of the caregiver. She changed Mom's sheets, made Mom comfortable, even moved the picture collage I put up so that Mom could see it (they had blocked the area I had taped it to with pads around her bed railing so that she can't fall out). She was very sweet. 

At one point, she told me that she was impressed with how I speak to Mom. That I'm very patient with her and how she's seen people be mean when their sick relative repeats themselves and babbles for hours. Mom did, actually, babbled the whole time and not make much sense. They gave her something to calm her down, and it worked well. She stopped trying to bite things and fight everything, and stopped saying she was "leaving the prom". She did, however, continue to babble, stutter, beg for pain meds, beg God for help, beg me for help, repeat herself about 800x, and start a million sentences she never finished. The PCA is also a caregiver and said she's seen people treated horribly by their caregiver-relatives. I told her that this part was easy; Mom's being nice. It's much harder to be calm and patient when she's accusing me of being the devil and raising such hell about me being in the room and demanding to see a social worker that they fear I may be abusing her at home and maybe she's telling the truth about me trying to kill her and hiding her meds. I said that my mom can be a tool, but she doesn't mean to be one. I told the PCA that if she was in the room the night before, she'd never believe this was the same woman. She said she's seen this before and that she believes it, and she knows it's the primary caregiver that gets the hateful anger when it needs a target. But tonight, Mom was having me read passages from the Bible to calm her down, and she was repeating prayers that I was reading her, asking God for help and strength and (kinda funny) for the doctors to have the wisdom to know what they're doing. She is mistaking the pain in her gut for hunger and won't stop eating. I brought her a JIU, graham crackers, spaghetti and chicken soup. The PCA even commented that she could tell that the caregiver was Jamaican by the look of the chicken soup, and that she bets it's delicious. And she'd be right about that. HA!

At one point, Mom made the PCA tear up. It was sweet. Mom was telling me that she wanted me to go home and get some sleep, but that she wanted me to stay. She said that she doesn't remember being mean to me or accusing me of any of the things she did the night before. She apologized and said she doesn't want to hurt me anymore and that she doesn't mean to and she loves me (insert a little crying...she always feels guilty afterward). I told her I know she doesn't mean to, and that's why I'm not mad at her. I told her that when she's that sick (i.e. she doesn't know which end is up), she doesn't know what she's saying and I know she doesn't really think that way about me. She got a hug and a forehead kiss, and then I put her eyemask on her and asked the nurse to bring her something to help her sleep. It was after 10 at this point, the rest of the room was passed out, and Mom kept saying how she needed to shut up, but couldn't. Her mind just wouldn't stop. I imagine that she has a rather humungous migraine. The nurse brought her something to help her sleep, and I stayed until she passed out, which I'm happy to say happened quicker than I thought it would. Mouth open, graham crackers and her water bottle by her side.

I'm scared. I don't know what's going on in her noggin, and the severity of her migraine and confusion worry me. I've never seen her this bad. She was like those super-old people that were in the hospice hospital with biogran. The old man who would mumble at passersby and tell women they were good little girls in school and ask if they knew his daughter Maddy. Maddy was a good little girl. I asked the doc what could cause Mom to behave this way - why is my Mom gnawing on her own fingers and medical equipment? She said she doesn't know, and that the testing should help them figure out what's going on. She did confer with Mom's hepatologist, and somehow they decided that this was her "normal" behavior. But trust me when I say that Mom hasn't been this out of it since she was on hospice in 2010, had a bad mix of meds, was up for 36 hours straight, and took a 3 am stroll down the block with her pajamas on backwards. And we're fairly certain she drank Lysol at that time. She also walked so much that the ascites fluid went to her legs and they were so swollen that her skin cracked and bled. I'm glad she's resting and calmer with me there. I hope tomorrow brings good news - at least that we know what's going on and can move forward from there. For now, it's nearly 2 am and I'm in need of my own downtime. Goodnight...or good morning. Whatever, as long as it's good.

Day 2: November Hospital Visit

After speaking to the medical doctor last night, I wasn't convinced that they would do right by Mom. Every other doctor and nursing staff says that the doctors confer with each other and that Mom's hepatologist would be consulted prior to her release. It was, after all, he that stated 3 weeks ago that he wanted her in the hospital to run some tests as an inpatient. But when I brought this up to the medical team doctor last night, she stated that "she can see him as an outpatient," and dismissed the idea of letting him see her. I called his office this morning to ask him to see her before they release her, and he said he would try to see her today. They close the clinic at 2, so I'm hoping that he can have time to go see her.

Mom hasn't been able to flush her system of the ammonia yet. She's been having problems at home (she's sort of clogged) and the medical team doc said that this is the likely cause of her symptoms getting worse. I am rather concerned that the medical doctor is not a hepatologist and doesn't quite understand HE as well as I'd like. She doesn't understand that severe personality changes and mood swings are symptoms (she keeps asking about bipolar....no, Mom doesn't have a "psychosis", she has HE!), and she says that HE isn't something that's always a problem. Like, it comes and goes. I agree that the symptoms get worse or better, but it never goes away unless you have a liver transplant. There's no cure for this, and if the medication doesn't work great for a particular patient, they have episodes like this. But it doesn't mean that they "don't have HE" the rest of the time. It's just a matter of how much it affects her at any point in time.

Mom called me a little while ago. I can tell that her body's fighting. The conversation started off angry and confused. She is convinced that I'm not letting her come home and that I have ultimatums or I'll kick her out of her own house. I may not agree with or understand everything the medical doctor says, but if her hepatologist says she's okay to come home, then I accept his decision. He knows her, he knows her baseline, he knows that she can be snippy (though she's been working on that), and that she's not normally in cop-calling mode. Am I the only one who thinks it's not a coincidence that her last episode with babble talk and a splitting migraine just happened to be days away from her calling the cops on me for not making an egg burrito? She started to break through a little bit; she told me she loved me and she knows I love her. She's starting to waiver on her severe anger, but the mood swings are still there. She still hasn't cleared her system - she's still clogged, even though they're giving her meds - and I think that once she does, her head will clear up quickly.

I hope they don't release her too soon. It'll just make things worse if she's home AND this bad. I'm hoping that we can get someone to help us when her head is clear. If we can sit down and put something in writing about what to do the next time *I* think she needs to be in a hospital, and have it in print, maybe that'll help her not to feel like she was tricked. But honestly, I don't know that she'll ever think she wasn't abused when she goes into a hospital. The whole reason of being there is that she's so confused and HE-ridden. Her hepatologist said to bring her in 3 weeks ago. She said she would if she got worse, and didn't follow through. Her PCP told her he wants her in a hospital (but he lacks the cajones to do his job anymore. I really have lost all respect for him as a person and a doctor), and the hepatologist on call at the hospital also told her to go in. She told me she'd go if we got her meds to take with her so she wouldn't go without krystalose in the waiting room and could get a head start on it. I got her meds. We went to the hospital. There was no trickery. But she's deadset on the delusion. After all that, she still thinks this was all my idea and that I'm trying to kill her. I don't know that having a plan (which I thought we had, and I was following), even having it down on paper, would make her calm down about going to the hospital. But I think having it down on paper and having it talked out and planned out with someone else (like her hepatologist or a family friend), would make it easier to explain to a doctor the next time, and they'd understand this is less of a social worker issue and more of an HE issue. Then maybe they'd understand why I still went out and bought vitamin water and brought it back to the hospital, because that's what Mom wants to take her krystalose with, even after all the horrible things she said. These people strike me as illogical. They're shocked that I'd do her such an unnecessary favor after how vicious she was, yet they don't believe me when I say her anger and mood swings are part of the illness and not normally this bad. Maybe they think I'm insane. I've been called worse...by Mom, no less. =P

I think another part of her problem is that she hasn't been taking the krystalose as she was prescribed. The pharmacy said they issued an 18-day supply. As of last night, they said she should've run out 10 days ago, yet she has a few packets left. She doesn't understand how that could be true, because she believes she's been very good about taking her medication. I don't know what to do at home with her. I can't micromanage her without her raising hell, and I can't even observe if she's taking her meds with her door closed all the time. I know that sending her home will just repeat this cycle. She understandably wants her independence, but isn't taking meds like she should and isn't able to keep her HE under control on her own....I just don't know what the solution would be here. A few people have mentioned Hospice, but when Mom's head is clear, she says she's not ready to go yet. When her HE is as bad as it is now, she says she wants to die just to spite me, and then she says that I'm trying to kill her, so she'll live to spite me. There is no easy answer here. I wish I knew what to do to, and I wish she could get on a transplant list for HE, but they don't count HE as a problem. Trust me; it's a problem.

Hospital Visit

At Mom's doctor's appointment yesterday, he told us that her ammonia level (from last Friday) was 243. That's up from 188. That's up from 190. It's supposed to be under 95. She spoke gibberish and had an ammonia-migraine at 180 in the past.

Her symptoms have been getting worse. The memory loss was down to minutes. Her speech is very stunted - she breaths for every word and stutters. She gets frustrated because she can't think of how to say the word she knows she means. She described (sort of) a disconnect between brain and mouth. She hasn't been able to understand the simplest things, or take her meds right, or control her mood swings. She gets lost as soon as she walks 30 feet or turns a corner.

Her primary care doctor is a moron and I've thrown in the towel on him and his staff. His staff has always been disappointing, but this time, he lost my respect. I don't know why he won't do anything about this, so I can't possibly understand what I don't know. He has the power to put her in a hospital for treatment and won't use it. She doesn't understand what's going on, doesn't understand why she'd need to be in a hospital, doesn't understand that this could kill her very very soon, and doesn't understand the treatment she'd have to perform if she had stayed home (thus, she wouldn't have actually taken the medication to get better and would've slipped into a coma). 

I had a crisis of morality. Of faith. I could not, in good conscious, drive her home with coma as her fate. I could not just pretend this was fine. I was nauseas with the idea of it, and the fear that she's so close to coma and that I knew I couldn't get her help in our area. I didn't know what to do. Our EMT's don't know what this is, don't know the signs, and don't have a baseline for her behavior to determine if it's "her normal" or not. I called her hepatologist's office, which was closed, but spoke to his colleague on call. He spoke with Mom. He told her to go to the hospital, and she told him how scary that was for her. She's terrified of hospitals, of the lack of pain medication, of the uncomfortable beds, and for some reason she strongly believes that things happen there that don't. I won't be descriptive, but it's stuff that happens if you're abducted by aliens; not hospital staff. I knew she wouldn't go unless I forced her, and I knew that once the doctors in the ER spoke with her or saw her, they'd keep her. No good doctor would let her walk out with ammonia that high and constant confusion.

So I drove to the hospital. She was crying and trying to convince the doctor on the phone that she would be fine at home or that they would do bad things to her in the hospital. And that she would miss her dogs. We've already been through all this; the bargaining ("I'll go if it gets worse"...but she never does), the threats ("if you make me go I'll never forgive you!"), the guilt trips ("you just want me to die, that's why you're taking me"). She is so afraid and so ill that she doesn't believe this can kill her, and today. So I drove.

And I texted our family friend, who's mother had this illness. She met us at the hospital and, for the majority of the time, was able to keep Mom calm. She pretty much bashed me the entire time ("no loving daughter would do this"), but at least she bashed me to someone else and didn't feel obligated to listen to it. And I wasn't alone, and neither was Mom. I am SO grateful that she was there!

We got there at 7 pm. They were drawing blood, ordering CT scans and x-rays, and trying to find her a room upstairs when I left at 7 this morning. I got home around 8, fed the zoo, and attempted to take a nap. Mom called me, demanding to know why I "stole her keys out of her purse". I got gas in her car on Tuesday, and the keys had been sitting on the bar the entire time, but she doesn't recall. She always thinks they are in her purse, even if nobody put them there. So I must've stolen them. I tried explaining this to her, but she didn't comprehend, and kept crying and screaming at me and demanding to know when I got into her purse to steal them. I'm up now, I'm packing a comfort bag for her, and I'll head out as soon as I eat something. It's been 14 hours since I've eaten. She still believes I did this for fun. I know she'll never understand or agree with it. I know she'll always think I took her to the hospital just to cause her pain. Even after they clear her system and get her levels back down, she'll still believe the delusions she's building now (she still thinks I kept her handcuffed to a hospital bed in our basement with my aunt....but we don't even have a basement and my aunt lives across the country, and I don't have handcuffs...she knows it was a hallucination caused by meds but she has never trusted me since). But I had to do something to help her. I know she doesn't want to die now, and this is what needed to be done to prevent that. 

The doctors are doing what they can for her, and I'll try to update when I know more. Obviously that will entirely depend on the circumstances and where I am. I don't tend to blog at Mom's hospital bedside. Prayers and good vibes are welcome and I hope everybody had a better Halloween than we did.

Keeping Her Chin Up

Mom is so sad today. She feels unloved and lonely. She's terrified of dying alone and abandoned. She says I'm the only one she has left. I hate to say it, but I can't prove her wrong.

I've asked her family members and friends to comment here. To call her. To remind her of who she used to be. To reminisce about how sweet or funny or feisty she was at one point or another. To make her feel loved and know that she's not alone. I know people love her, so why didn't anyone respond? 

I'm going to reach out again to her family and friends today. For those who prefer, leaving comments would be so awesome! For those who are more tech savvy, making short videos or voice recordings would be even better. If you don't have a webcam, you can use your cell phone. Her birthday is coming up in a few weeks. I'd like to collect these and make a montage for her birthday. We never know how many birthdays we have left with her. I want her to feel loved and not so lonely. She cries when she says I'm all she has left. Nobody should have to feel forgotten when they're sick, especially on their birthday. So family (and friends who are really family) - expect calls and texts. I will be harassing you til I get something nice for Mom.

Speaking of harassment...I spent two hours on the phone today getting NOWHERE with her insurance company and pharmacy. Both are incompetent and neither know their own policies. Mom's out of her acid medication, so she's burning and miserable, and I keep getting lied to about how long anything will take. We've been waiting for her meds for a week, and they said it would take 2-3 days. It's still at the pharmacy. It'll take another 10-14 working days to get here, and we can't get anything in the meantime because it's technically "in process" and not shipped. But it's already too late to transfer it to a local pharmacy...ugh..you see where I get stuck on hold forever and a year. So they told me to call every 4-5 hours until it's shipped, and then I can request (though they don't have to approve it) a "bridge supply" to hold her over until the mail order script gets here. I think insurance plans pay their employees extra to stall and screw up and lie to patients so that we eventually throw up our hands and walk away. So in about an hour, I get to kiss someone else's butt and hope it rains medication. I better be able to get it soon. Mom can't eat when she's belching up bile.

Yay HTML...kinda...

Please bear with me while I'm changing the layout of this webpage. I'm trying to make it flow a bit better, give people all the info they might want or need, and make it more accessible to those who don't have blogger. So far, I'm happy with what I've done today, but I have more changes planned. I'm hoping to have all the buttons working tomorrow (right now the paypal button isn't working, and I don't know why...). 

I'm happy that all the other links work. Please take a look at what I've posted here. I have a link to the left for the documentary trailer - the full documentary will be released to the public after the liver conference; about mid-November. The trailer is fairly rough (emotionally), so be prepared. The final film is a bit more fair to the positive/negative non-balance (it's not ALL bad...), but the irony is how much harder that can make it. I know from my own experience that I can love it when Mom is "Mom" again, for those brief moments...but it's heart-breaking and I wish she could be her again longer. It's almost cruel to me; to know that she'll slip back into her HE-fog again within a few minutes. But then I know that if she was horrible all the time, I'd have given up on her long ago. We are getting along a lot better lately. She's in a talking mode; we're talking everything out. Almost....can't expect perfection, right? Another link that works is the one to the American Liver Foundation. Learn about HE, the symptoms, how to keep your own liver healthy, and please give a donation. Education is key to prevention, and research is key to treatment. Right now, there are only 2 medications on the market that treat HE. And they don't always work. We can do better!

Tomorrow (rather, today, by the time I post this), we have what should be a simple appointment with a podiatrist. I have no idea what she told the doctor at the last appointment that warranted this referral. Mom says she has to take a "foot test", whatever that means. I told her she'd pass because she has feet. :) I'd go by the caregiver's notes, as she was with her during that appointment, but that caregiver no longer works with us and took horrible notes. Long and detailed, but inaccurate. Lots of descriptions of what the doctor seemed to feel, but nothing substantial, like why a podiatrist is necessary. Yet another reason she's no longer with us. She wants to remain Mom's friend, but wants nothing to do with me because I fired her. Frankly, it creeps me out that she wants to hang out with Mom alone. She knows exactly how vulnerable she is, and how easy it would be to take advantage of her. She's already come over when I wasn't home, and the first thing she verified was that I wasn't home at the time. The idea that she's purposefully avoiding me to get Mom alone, when she's already so emotionally unstable, makes me want to ban her from the house. I don't have the power to do that, though, and Mom is begging me to trust her judgement. I don't know how to tell her that her judgement isn't what it used to be. There's a bit of my objective self that says I'm over-reacting, and I hope that's true. When you care for someone who's so ill and so easily confused and screwed over, you tend to get over-protective. But then, I'd rather her be safe than me be sorry.

This weekend's sale was surprisingly disappointing. For various reasons, a lot of my friends that were to show up in support couldn't, and it was quite windy. I think the wind stopped people from getting out of their cars, and marketing the shows right now is a learning experience. We're just not reaching an audience, but I don't know how to do that. I did get to meet a few peeps from the crafty online group I'm in, and that was awesome. I love that I live in a creative community, and being involved in that is great for me. The *people* were great, and it was fun, but the *sales* weren't so hot. I did make a little money (all for the caregiver...I'm a bit bummed that I didn't sell anything I made with my own hands, but I'm being sensitive), but it wasn't anything close to what I was hoping to make in order to place a bulk buy of the t-shirts. The next step is to send them to newspapers, radio stations, and tv talk show hosts. Mom wants me to send one to Oprah. I told her I would, but we have to make money to place an order first. I'm researching how to do this, which is part of the whole html thing. I know we can pull this off. We can raise awareness and get people to pay attention to this condition. We were chosen to do this because we *can* do it. After the show, I went home to lick my wounded ego, and Mom gave me a pep talk. She was so sweet! She promised we'd figure this out, one way or another, and told me that everything will be okay. She amazed me by saying that. After all this time being so negative and focused on what goes wrong or what could go wrong...we've been working with her to be more positive - and now she's schooling me on my pity pot! 

I'll post more updates as things happen. Again, please bear with me as I change the look and functionality of this blog...if links are broken, I'm sorry! If images are weird or scrawl across the page, I do apologize! I'm previewing everything before I post it, but sometimes it doesn't publish the way the preview shows it should be. OH! Good news, though! A certified personal trainer who specializes in rehab/post-op patients stepped up and volunteered to work with Mom to keep her muscles from withering away. It is part of his ministry and he hopes to open a gym one day for at-risk youth. How great is that?

Now Available!! Go Team Kathy T-Shirts!!

The design is done and I have the first one! I'll post a pic of me wearing it at this weekend's craft fair, but in the meantime, here's the finished design. Please excuse the wrinkles...I had it in my stitching bag and would pull it out, brag about it, and stuff it back in. Shirts are available in pretty much any color (even neon - my cousin would love that!) and size, unisex and ladies (ladies shirts are the same girth as men's, but a little bit shorter sleeves and torso length), even babies and toddlers! 

To order, contact me or Big Frog Custom T-Shirts & More in San Diego at 858-538-FROG (3764) directly. If you call Big Frog, be sure to talk to Tom and ask for the Go Team Kathy shirt. White shirts are $15.99 each (plus tax) and color shirts are $16.99 (plus tax). If you buy directly from Big Frog, they will ship it for you (or you can pick it up) and we will get 20% of the proceeds! From that 20%, a portion will be donated to the American Liver Foundation and the rest will help pay for Mom's caregiver expenses. If you buy through *me*, and I have enough ordered to make a bulk order of them (bulk order discounts start at 5 shirts and get better with more shirts ordered), we'd get MORE than 20%! If you buy through me and I don't have more than 5 shirts to order, we would still get the 20% donation from Big Frog. 

I only need to sell about a dozen shirts to pay for the website to go up. After that happens, I can simply have a link here for people to pick whatever shirt they want in whatever size they want. No need to call (though you still could if you wanted to).

Close-Up of the ALF logo on the back.

Close-Up of the crest on the left front; the next batch will be more lavender (Mom's fave color).

I want to stress how important it is to keep the caregiver around. I CANNOT take care of Mom by myself - it's simply not a one-person job. Also, I need a paying job! I'm looking (casting a wide net and applying to everything), but I haven't had positive responses yet. A job would help me distance myself mentally from the stress of caregiving (and the stress of watching my mother deteriorate and suffer the way she does with few or no solutions) AND help pay for the caregiver. I need to be able to work to keep the caregiver and help out with the bills around the house. Until then, we're struggling to make ends meet, and Mom can't pay for the caregiver herself. There just isn't room in the budget, and we don't qualify for aid as no agency recognizes medical bills anymore (i.e. if she wasn't sick, she'd be financially comfortable, but since she IS sick, and I'm unemployed, we fall below poverty level). So fundraising like this is essential to keeping the caregiver coming. She may be awesome, but she won't come work with my Mom for free! Nor should she have to....if I could afford it, she'd be getting paid a whole lot more than what we pay her now and she does deserve double (and double is what agencies would charge us)! But she works with us and makes the most out of the hours we have her here. I'm hoping that once we get this off the ground, we'll get more traffic to this blog, and Mom will get into it more. She likes reading this and likes the idea of helping other people with HE. I see this as a great opportunity to raise awareness, help others with HE and their caregivers, and help continue getting the care that Mom needs. 

A huge THANK YOU to Big Frog for helping us with this! They are so nice there and I love that they enjoy giving back to their community and helping people!

And Juice It Up in the Village Walk Plaza in Murrieta knows how much my Mom loves her Kathy's Special JIU and they are allowing us to post a flyer about the shirts in their window. They are very sweet! :)

Designing Time!

I spoke with a representative from the American Liver Foundation early this afternoon. He was SO nice and SO wonderful and they are on board with the t-shirt! He sent me the logo while on the phone with him, and I've contacted Big Frog (the t-shirt company) with the information we need on the shirts and the ALF logo. Hopefully we touch base tomorrow and come up with a good design. Depending on how busy they are this week with previous orders, I'm hoping to have my own shirt this Friday! This is so exciting! I can't believe that everyone is being so helpful and willing to share their logos and information and not being all "corporate"-like about it. This is just...awesome! I'm blown away.

The guy from ALF is going to send me the info on the local chapter. They have one in San Diego that I never even knew about! They have runs and events and groups that I can be a part of - and caregivers that need to know they AREN'T crazy and they AREN'T alone! I am so excited that the house could fall down around me and I wouldn't notice. This is such great news and such a blessing!

Kathy's Special at Juice It Up!

Some days, it's impossible for Mom to keep food down. Sometimes her GERD burns her throat so bad that she needs something cold to combat it. And liver disease has a way of desensitizing taste buds. We found a solution, and Mom's currently obsessed with them. 

The Juice It Up! at Village Walk Plaza in Murrieta makes Mom her own "Kathy's Special". It's a 24 oz smoothie that includes carrots, beets, apples, bananas and orange juice. They add a power boost, which is protein and low in salt, so it doesn't cause ascites. They use frozen bananas and ice to create a smoothie texture because Mom is lactose intolerant and can't have the yogurt. She LOVES these things. The people there are so incredibly sweet to her, it's ridiculous. The owners are a lovely married couple who love their job and ask how Mom is doing, even if she's not there with me. They keep her recipe by the cash register. They are the sweetest people. As they are small business owners, and as I can't tip them (trying to save for the caregiver account), I'm encouraging people to go try one of Kathy's Specials. A great "thank you" would be to boost their business. If you're in the area, they have the recipe. If not...I'll try to get the exact recipe from them for people to have it anywhere. I figure it's a great way to support Mom and be on her team. Unity in juicing? =P

I have to admit, though, I go for the Melon Madness. I can't help myself from watermelons and strawberries.

Support Team Kathy!

I'm adding a button to this site that allows anyone to donate directly to my mother's caregiver account. It's linked up through paypal, but you do not need a paypal account to donate. You can use your credit or debit card to donate. So whenever you see this button, simply click on it and it'll walk you through the donation process. Every little bit helps! Even a dollar!

Other ways to support Kathy: 

• Leave a comment on the MEMORIES page. Mom thinks everyone has forgotten about her and doesn't care. Snippets of good memories and positive comments make her day so much better. She really does love to hear them, so PLEASE drop a line to her!
• Go to www.fiberedlife.storenvy.com and shop from Amber's Attic. Everything in that section is from my grandmother's estate and goes into Mom's caregiver account. 
• Be a part of Team Kathy and buy a t-shirt! This is still in the works, but as soon as the design is finished, shirts will be made by and shipped from Big Frog Custom T-Shirt & More of North San Diego. White shirts will be $15.99 and colored shirts will be $16.99. The more shirts we sell, the more help we get, AND the more awareness you raise by wearing it proudly!
• Learn about HE. Visit www.hesback.com for the preview of the documentary that will be out in mid-November (about the same time as her birthday!). Try to understand what it's like to be in her body, and try to spread the word. We can treat those who've already been diagnosed if we understand the condition better, and we can avoid future diagnoses by not allowing ourselves to fall into the traps that cause liver disease. Eat a healthy, balanced diet with minimal salt and processed foods, get help if you need to avoid alcohol*, and exercise regularly. Simple things we should be doing anyway!

* Note that most patients with HE are/were alcoholics. Mom's HE and liver failure is not due to alcohol use. Her NASH (non-alcoholic steatohepatitis) is caused by PBC (primary biliary cirrhosis) stemming from a failed weight loss surgery in 1979. The by-pass caused a domino effect in her GI tract that eventually caused her liver to fail.

Massive Update

Tonight's conversation with Mom included such topics as: who I do or do not care for in my family and how that affects *her*, her request that I play pediatrician to someone else's baby, the way I say "okay" (which she's determined is not okay), her incredible fear of the hospital, the questionable gender of the plaintiff on TV, her desire to lead educational seminars about HE, to have or to not have chicken nuggets, and her wish to laugh with me. I am confused in more ways than one. I just might break my rule of "no drinking alone."

The last hepatology visit went well. It was about two weeks ago now. I'm rather impressed with this doctor. He's young (or looks it), but he knows what he's talking about. He recently published a paper on HE and actually stayed long enough to speak with Mom to get a clear impression of her ability to communicate. He agreed that her HE had become worse since her last visit with him. He had problems communicating with her, and she couldn't understand or follow the conversation well. The miralax doesn't target the ammonia, but the lactulose causes her such abdominal pain that she's not really functional. He recommended she drink 3.5 oz of lactulose every other day, alternating with 17g of miralax. Another week later, and we were calling him again. She was far worse. She started taking her medication all at once (i.e. the four different times became once a day....which means that a lot of them were double-dosed and quite a few were fighting each other). I had to remove her medcenter from her room, which caused her to throw a very big fit. Luckily, the caregiver was here to witness it. I did record some of Mom's rantings recently, but as my webcam is a cheap one, you can hear her but can only see a dark shadow human shape. I'll feel a lot better about a lot of things when we get the dropcams in. It'll relieve stress when Mom is left alone, it'll act as defense for me when she calls the cops and tells them how horrible I am, it may even allow her to see how she behaves and break that wall of denial. The dropcams will also allow two way communication through the camera. I like that because she constantly calls me and says something like "is this any good?" and I don't know what "this" is....

Her doctor said that she should go into the hospital, but she's refused for a week now. He prescribed krystalose, which is the powdered form of lactulose. It means she can get a higher dose of it with less liquid. She kept taking 3 doses at once, which can cause internal bleeding. It took a few days, but she seems to be taking less of it now. I just hope she's taking enough. She doesn't allow me to monitor her krystalose intake. She's allowed me to keep the medcenter in the living room. I was making sure she took each dose on time, but she seems to have a handle on everything but the first dose in the morning. I think she takes it in her sleep and sometimes doesn't stop at the first dose and just empties the box without really being awake. The urologist gave her a new med to help her sleep at night (it helps her to stop needing to get up as often to use the restroom). The hepatologist said that she needs a neurology consult and that she should go into the ER at Loma Linda. He would admit her and run the tests she needs done (like an MRI, neurology consult and blood tests). She can't seem to remember this nugget of information. She keeps asking him for an emergency appointment, but he tells her no because that's not what she needs. She keeps telling me that she needs a referral to see him, and that she won't be treated by her hepatologist if she goes to the local ER. In reality, she doesn't need a referral to go to the ER, and it would be the one in Loma Linda, so the hepatologist would be there to admit her (it was his plan, after all). She also thinks that she'd have to pay for the trip to the ER as if she's taking an ambulance, but I would drive her. Overall, I think she's largely confused about the hospital and what would happen, and the only thing she knows is that she's scared of it. So she won't go. I understand, but it's hard to see her hurting herself and keeping this fog on her brain when I know that a hospital stay for a few days would bring her mind back (as much as it can come back), speed up her recovery greatly and give me a break as well. She's improving on the krystalose, but very very slowly. It seems like she's reached a plateau. It looks so much like she's getting better, having fewer emotional outbursts, stuttering less, remembering more....and then she takes a giant step backwards. Such as the conversation tonight. At this point, I have no choice but to watch her and see what happens. If she gets bad enough for babble talk, I can easily force a hospital stay on her, but I'd have to call 911. If she stays at this pace, she'll probably be back to what she was (not healthy, but functional) in several months. I may be insane by then. I may already be.

At the doctor's appointment, when we were discussing the lactulose's benefits and side effects, I commented that it seems that the choice seems to be whether she wants her body to function or her brain to function. He said yes; that's what she has to choose between. What a horrible choice to have to make. It was the saddest thing I've heard in quite some time, and living here, that says a lot.

I do have good news, though. There's a t-shirt company that's willing to help us with fundraising. Once I come up with a design, they'll offer to sell shirts individually and we'll get 20% of the proceeds. If I do a bulk buy and sell them myself, we'll get another discount and get more than 20% back. I've contacted two organizations that I'd like to be involved with this, and with their support, I think it would do rather well for all of us. It would help raise awareness of HE and help raise money for the caregiver account. I'm asking for FAMILY AND FRIENDS to leave comments on the MEMORY PAGE (see the link to the right). I'd like to read them to Mom; I know they'd make her feel good. I'd also like to use them for ideas to help design the t-shirt.

At this point, we have approximately 55 hours left to pay the caregiver, and I'm still applying to jobs. I did have a Junky Trunks sale (see Junky Trunks on Facebook!) and made a few dollars, but it was the first and doesn't have a following yet. I'm hoping that if I continue, I can clear out the dining room and the office and make enough money to hold us over until I get a job. It doesn't help that our printer ran out of ink, and isn't the kind that can be refilled. We have several printers or combo machines in this house, and you'd think one of them would work, but they're all either dried up or have a computer error that makes them useless. I found one in the shed that I'm going to clean off and test, but in the meantime, I have to print applications at Office Depot. There aren't many employers that only accept applications in person anymore, so at least I don't have to go often.

Mom just told me she took out $500 from her credit card to give the caregiver for a week. I have to figure out how to get her to put the money back on the card. I have to stop blogging right now, but I'm hoping to do this more often and get a following that will help raise funds as well. I'm rather hopeful that Mom will be comfortable with video blogging when we get the dropcams, which will help people understand what it feels like to have HE and might bring in followers, too. She seems tempted by the idea, but scared of it at first. We'll see. But for now, I have to figure out how to explain to her that 12 hours a week doesn't equal $500. God save us.

Short on Time

This update will be FAR too short, as there is a lot going on, but I wanted to put this up here. The finer points-
~Mom's new liver doc essentially says the opposite of everything we've been doing (except for the salt limitation), so we'll see how that turns out. He also changed some of her meds, but it hasn't been long enough to see if it works well.
~Mom tried a new pain med that did NOT go well - she was affected for days and fell onto the tub wall and broke the two ribs she broke before. She's in pain and it hurts to breath or bend over, but x-rays show no punctured organs and there's not much to do but rest.
~Heptatic encephalopathy is ignored and not paid the attention it deserves. This disease ruins lives and has been around since alcohol, yet nobody has heard of it. Thus, a documentary is born. See the trailer HERE. We aren't in it, but I'm contacting the producer and it's possible our story will get heard anyway. I would LOVE to go to the opening of this, but I don't have the funds to go to LV and it might be closed to medical professionals. Chances are they would be the ones being educated and wouldn't be able to help me anyway, but there's a part of me that would like to see the looks on their faces when they realize that people with HE aren't mean just to be jerks, though they do have limited control over their symptoms and total control of their behavior when in their right mind. 
~Our primary caregiver is out for this month, but we have a perfect substitute and Mom is being very well taken care of by a woman who can differentiate between disease and person, and also cooks up some mad yummy food without salt. She's great with Mom and has the patience of an angel, yet the sarcasm that entertains me so. Marvelous.

That is all; I have to go to bed. I have to keep searching for jobs this week. I had a job for a minute and lost it, so it's back on the hunt. At least that time did afford me to be able to put more money in the caregiver account. Please remember that we're selling stuff on the sites at the top of this page to raise money for caregiving, and checking out my Fibered Life's facebook page will also lead you to the yardsellr page, on which I'm selling cheaper stuff for the same reason. Tell your friends. Maybe they would be interested. We need to keep the money rolling if we want to keep the caregivers coming! Thank you!

Tomorrow is a new day!

Two caregivers will be out tomorrow. One (Erin) is hired already and we've been negotiating hours. Erin and I are on the same page, but Mom is so afraid of running out of money that she is strongly against having Erin out for more than 9 hours a week (3hrs/day for 3 days). But 3 hours doesn't get much done and wouldn't be enough. Tomorrow will be "training" for Anita. I'm hoping she can cover the other two days a week. I'm excited to see if their personalities mesh well. Go Team Kathy!

I'm hoping that these caregivers will alleviate some of the pressure that Mom unintentionally places on me to take care of her every need. She expects me to clear the house, find a job, cook 8 meals/day (which is the same as cooking about 3 meals/day due to the volume she eats versus the volume I cook), take care of the dogs, take her to her appointments (which we've been booked solid for weeks now) and help her with her paperwork (currently working on 8 applications including several prescription co-pay assistance and weatherization programs) and NOT need a caregiver. She thinks going to the store is a relaxing time because I'm physically away from her. She doesn't understand - I'm still working for her. I've noticed lately that her HE is acting up. She's comprehending less and it takes longer to make things make sense to her - if they ever do. She keeps refilling medication she's not out of because she refilled it early last time and the pharmacy tells her it's been 3 months, so it's okay to order more. The home nurse and I even showed her the medication and she still thought she needed to order more because the medication we were showing her was ordered in April and December. They aren't expired (they don't expire for another year), yet the "refill after" date tells her to order more and she doesn't understand why I wouldn't want her to order more when she has a 3 month supply already. We're cash-poor. Yes, we have money in the caregiver account, but I pretend that money's not there because it's ONLY spent on caregivers. Thus, I have yet another fire under my bum to find a job quickly so that when she spends money willy nilly, I can still afford things like food. Food is rather important to me.

In desperation, I placed a 30% off everything discount code in my store. I still haven't sold anything and I don't know why. I'm going to try to take advantage of the time the caregivers will be out (after training) to not only look for a job, but get some of the crafts done that I really think will sell well. I can't wait to get this stuff sold - it would make us money (for caregiving and other bills) and also clear the dining room and make this house look more like a home.

Mom's blood test results aren't in yet for last week, but the week before was about the same. Her ammonia level is staying around 90, which is too high (it was 87 last week). Long durations at this high ammonia level is what's causing her comprehension problems. What sucks is that she doesn't comprehend that she's having comprehension problems. I get frustrated, she gets her feelings hurt, and our problem doesn't get resolved. I'm working on this with my therapist, but I know that getting a job and being away from her for some time will increase my patience with this. I'm worried that she will get worse and that if she keeps going down this path, she will need to be placed. She has no sense of taste and little sense of smell. She keeps eating spoiled food. She told me this morning that her watermelon was "slimy." I told her that slimy means it's rotten and not to eat it. She argued and said it didn't smell bad and that it didn't taste bad and that it was just a little slimy and I only cut it a few days ago. While I did cut the watermelon only a few days ago, that doesn't mean it can't go bad quickly, especially when it's in Mom's presence. She has a habit of leaving food out of the fridge too long, of using dirty silverware and using the same silverware in all dishes (which means cross-contamination). She fails to understand the consequences of things like this and tells me I'm a hypochondriac. Then why does she keep telling me she thinks she has food poisoning? Maybe caregivers can keep a better eye on this. I keep thinking of her as a logical person, as she always has been. But her illness has changed her, and I must change my expectations of her as appropriate. When we have discussions about it, she gets extremely upset and defensive and hurt. I don't think talking about it with her really does any good. I'm trying to infiltrate more tofu and plant proteins in her diet in place of animal protein. Animal protein has a nasty by-product of ammonia, and plant protein doesn't. Still waiting on referrals for the urologist, neurologist, and GI, but we see the liver doc Tuesday. This last week's blood test included an A1C - we'll see if she's diabetic or hypoglycemic. The lactulose plays hell with her blood sugar. Please tell people about the store. I'm even on google if they type in "fiberedlife." Thank you all.