Weekend Photography with Steve & Flower::April 9

What I do on Sunday drives (take pics):



What Steve does on Sunday drives (while I'm taking pics, he reads):



So glad that we exist so well together :)

After the drive, I went outside to do Matt's animal chores, since he wasn't feeling well.

I decided to take my little Dutch bunny, Flower (who is also my favorite rabbit, but don't tell any of the others) out of his cage and let him eat some new greens that have just popped up. The resulting pictures are adorable!



Also this weekend: My blood pressure has been cRaZy! I went to the ER on Thursday night because I feel "fluttery" in my chest and my blood pressure was super high with a low pulse. When I got there and they tested my blood pressure it was 200+/100+ with a pulse of 53. After a few hours of monitoring, but not receiving any medication, my blood pressure went down on its own to a safe level, and they released me with a holter monitor to check on my heart for the next 24 hours.

The next day was the same type of thing, and the triage nurse was encouraging me to stay when I returned the holter moniter, but I was tired and didn't feel sick or any flutterings, so I left.

The next morning, I woke up and took my blood pressure. It was fine. I facebooked a little, ate a banana, and puttered for about an hour, and then my blood pressure spiked again, I felt super weak, had a huge headache, and felt nauseated. Back to the hospital.

The ER doc did an EKG and when it came back fine pronounced it as stress related and gave me ativan. I asked him to please do the labs anyway, just to make sure (it will show heart attack markers & markers for clots). The labs came back normal.

I'm still supposed to see a cardiologist; I have an appt. in May. Until then, my plan is to go to my regular doc and have her look over the big picture and see what she thinks I should do. I'm still not sure how it is just from stress, since it comes on w/o stress happening and goes away in the most stressful of situations..... Plus, another thought is, "Reduce stress? how? There is nothing that is obvious for me to give up or get rid of." It is so frustrating.

Sorry to complain. I have realized that I have only been sharing pictures and not talking because my internal dialog isn't always happy. I hope that you'll forgive me when I talk about some things going on in my life that *aren't* happy. It is the season of life that I'm in, and apparently, my health is starting to buckle because of it. Hopefully talking about it will be therapeutic.

The weather today is sunshine and blue skies. I am aiming to take a picture of at least one square of my garden that I cultivated yesterday, and hopefully a second or third will get done today.

As for the animals on my backyard farm:
a lot of my chickens died over the winter, which isn't too worrisome, since they are just old birds and it was their time. I still have six hens (2 Rhode Island Reds, 2 Black Sex Links, 1 Araucana, and 1 Delaware. I also have 2 roosters, which is one too many for 6 hens! One roo is a bantam and the other is a Black Sex Link. I have 2 free range Old English bantam hens, as well. I am thinking of putting the bantams in a separate run, letting the hens set on eggs, selling the chicks, and keeping the Black Sex Link roo in with the other 6 hens. hmmm.....

My nanny goat is off hanging out with a buck, hoping to produce a baby for the fall.

The rabbits are fine. I'm down to one female and 6 males; they are all pets at this time, since none will be bred and we quit raising meat rabbits altogether. So, they are sent "out to pasture", so to speak, for the rest of their days.

Today, my goal is to clean out the flower beds and get rid of the brown that is lingering to make room for all of the green that is pushing its way up.

I also want to trim up my herb garden; clipping some oregano that is threatening to take over the entire plot, and cutting everything back a bit, clearing out the dead to get ready for more life.

My strawberries have suffered from dandelions overtaking their bed. I'm going to need help to reclaim their space! It is simply too much work for one person to get done in a timely manner.

I still need to get some spinach planted; I am about a month later than I wanted to be. :/

Steve wants to try his hand at cabbage & broccoli. More power too him! I have never been successful with them.

I also need to find a supplier/greenhouse with zucchini that actually produce. I am going to avoid a local greenhouse, since my zucchini plants haven't produced for the past 2 years.

Anyhow, I'm off to take care of the animals for now, since Matt is still not feeling well (the animals are typically his job).

Have a wonderful day!

Dark and Twisty

Crazy life, mine. Have you ever experienced having a parent be abused, whether physical or emotional? It stinks.

Let me tell you what has been going on with my mom for the past couple of weeks.

Right after I got home from Steve's family reunion on July 24th, I checked caller id and the messages on the phone to see what & who we missed while we were gone. There were several calls from my mom's nursing home, with only one vague message from the social worker there saying that she'd like to talk to me about my mom.

Since it was Saturday and no one from admin. is available on Saturdays, I called my mom to see what the social worker might have wanted. My mom's reply was, "It was probably about my wheelchair." Wheelchair?? Why would she call about her wheelchair? My mom explained that she ran into the refrigerator that is out in the common area. She explained that she was getting some ice in a cup, no one was around when she got there, but several people were around when she was trying to leave. She said that as she was manuvering to not hit anyone, she must have ran into the refrigerator, but that she hadn't even realized that she'd done anything.

The next day when she was in her bed sleeping, the administrator and director of nursing came into her room and told her that she'd damaged the fridge. They somehow decided that she'd ran into the fridge because of how worn out dialyis made her, and they said that they thought her electric wheelchair should be taken away for a week. She "agreed" by saying ok. Her wheelchair stayed in her room, but the nurses and nurses aids were told not to use her electric wheelchair for anything but her dialysis sessions. She was given a manual wheelchair to replace hers.

I called the administrator on Monday morning, and he put me on speakerphone with the social worker, director of nursing, and himself. I explained that for the past several months that she lived there several things had happened such as: the wrong medication being given (she took a med for 3 days before they realized the pharmacy had sent the wrong pill), the medicine given at the wrong time (high blood pressure pill given before dialysis when dialysis lowers her blood pressure anyway - my aunt died from her blood pressure going too low and them not being able to raise it), tylenol being given in place of a pain pill but telling my mother it was her pain pill (my sister's friend discovered this had been going on for a while), and yet when we talked to them about these problems they said that "accidents happen". Yet when my mother has an "accident" her mobility is taken away.

I reminded them that my mother is unable to use a regular wheelchair by herself: she cannot push the wheels with her arms, nor pull herself with her legs. I told them that taking away her electric wheelchair was the same as shackling someone who can walk to the bed or a chair.

I was told that it was "for the safety of herself and others". I reminded them that it was a fridge, and that she was trying to *not* hit anyone. "But it *could have been* a person," was what they replied. I asked if they had ever hit a dog, cat, bird, rabbit, fence post, mailbox, parking lot divider with their car, because if they had, perhaps their driver's licenses should be taken away because it *could have been* a person.

How can I be sure it was punishment and not "for the safety of others and herself"? Because:
When I told the director that taking away her mobility was abusive the director said, "So you are saying that we are abusing her?", to which I replied, "It seems abusive to me." Then he said, "Would you like the number for the ombudsman" (for adult protective services), I said, "I absolutely would." THEN he said something to the effect of (meaning I don't remember word for word, but do remember the message that he said) "What if we did give your mother her wheelchair back, should we just have her pay for the damages?" THAT, my friends, was when my accusations were confirmed: the wheelchair had *not* been taken away for "the safety of herself and others" but as punishment for running into the refrigerator. (My response to his offer was that he would need to talk to my mother since I'm not her agent but that she makes her own decisions.)

No matter what I said they didn't budge and didn't give her wheelchair back for a week.

During that week, on Sunday, the aids tried to get my mother up to go get her weekly weight check. Because the manual wheelchair's seat doesn't raise or lower (when the seat is lower than the bed it is easier to "slide" into the wheelchair) and because my mother wasn't strong to begin with, but had also lost more strength by laying in bed for three days (she didn't get out of bed because she couldn't go anywhere anyway), when they tried to stand her up her legs were weak and she was "lowered to the ground". To me that just means that they helped her have a controlled fall. When they tried to help her up, she heard a pop in her shoulder, arm, or back. Thereafter she stayed in bed hopped up on pain killers. In fact, I hadn't been able to have a coherant conversation with her since that accident until this past Saturday.

On Saturday she called and sounded good, except that she needed to get off of the phone so that they could help her change position because she hurt too much to do it herself. She also told me that she can no longer stand *at all*. They now have to use a lift to get her out of bed because she lost so much strength by not getting out of bed for a couple of weeks. She and a nurse have told me that she has bed sores. They have probably gotten so bad because she has just used her depends since her wheelchair was taken away. At firt, she couldn't get herself to the bathroom, and now since she can't get up at all.

All of this because she hit a refrigerator.

I have contacted two state agencies: one agency is for the protection of the elderly, the other is the agency that licenses the facility. I hope that my mother's nursing home is forced to change their policy --currently their policy is that on the first infraction **without any warning** they take away the patient's electric wheelchair for one week, on the second infraction it is taken away permanently. The patients don't even realize that this *is* the facility's policy until it happens. It is not on the admission papers that the patient signs before entering the facility.-- My mother is NOT the only one who has ever had her wheelchair taken away, and until the policy changes, she will not be the last.

It is also my hope that my mother changes nursing homes, but it is her right to stay in an abusive situation if she wants to. *That* is the hardest part to bear.

Thankful Thursday::October 4th

Today I am very thankful that my brother Bill is home from the hospital and seemingly out of harms way. He fell off of the porch and lacerated his spleen. Since he has stage 4 liver damage, he bleeds w/o easily clotting, so he was in intensive care for a few days because of the internal bleeding. To be perfectly honest, I didn't think he was going to survive this one.

We took him to the ER on Friday night right after he fell, and they checked for broken bones, concussion, and internal bleeding. Nothing was apparent, but his blood pressure was very low - something like 100/46. They sent us home w/ orders to come back if there were any changes.

On Saturday morning, he had a headache and was dizzy. It seems that that would just go along with falling on your head (his hands weren't even scratched up - I am going to talk to the doc about reaction time w/ liver failure.....), but since he hadn't had a headache or dizzy the night before, I called a clinic and was going to take him in.

But then.... as he was getting ready to go, the dizziness increased and he actually blacked out and fell as he was walking to the car. The doctor was bypassed and we headed for the hospital.

They checked his hematocrit, and it was down to 23 after being 30 the night before. More ct scans - but w/o contrast, because that would have ruined his one working kidney - and x rays. The doc couldn't see where the bleed was because of the ascites in Bill's belly from the liver failure, so he decided Bill needed to be admitted for observation. We chose to go to the same hospital that he had gone to when he had his cancerous kidney removed in case he needed surgery they are more ready for someone with as many heath issues as he has.

The scary part was that when we took him to the hospital at 1:30 Saturday afternoon, he was perfectly coherent. By 4 he was confusing things a little; by 5 it was more; at 6:30 they took him by ambulance to the other hospital; by 8:30 when I got there w/ him he was lying flat on his back talking very little and was very out of it - no meds had been given. For the next couple of days, he was mostly disoriented, though he could remember his name,birth date, and what month it is which made the docs feel comfortable, but to those of us who know Bill, we were all very concerned.

He spent Saturday night until last night in the hospital, and they felt he was ready to discharge last night. Steve, Matt, and I went to pick him up. He was eating his dinner. And I realized something was wrong. Whenever his ammonia levels are high, he eats incredibly slowly... and he was. I talked to the nurse who talked to the doc who ordered an ammonia level to be taken. I was surprised when it was only 45 - usually when there are problems his level is 100+. Then I was left with the idea that perhaps it was his pain medicine making him confused....

I called the liver doc who said that 45 shouldn't be that noticeable, but more lactulose (which he takes to control ammonia levels) wouldn't hurt him. I convinced him to take 10 ml more - he usually takes 30 ml and I reduced his pain meds just a tad. He woke up hurting and had to take more early this morning.

He seems a bit better this morning. He has a doctor's appt in a couple of hours that I'm taking him to, so I'll get to hang out with him more and see more clearly if his confusion is subsiding.

Oh, one more thing: when they discontinued his IVs, they took out the IVs, put gauze on the openings, and wrapped coban around his arm. About 5 minutes later, he said, "What is wet on my arm?" and as he lifted his arm blood dribbled onto the bed. The nurse came in and pushed on the gauze and blood poured off. Oh.my.heck. Things like that used to happen to my mom after dialysis, but I was never with her and only heard about it.

I have concluded that valium should be ordered for caretakers when so many worrisome things happen... but then would would take care of the sick patient? The song "Designated Drinker" by Alan Jackson kept going through my head this morning. Even though I believe strongly in not drinking, there sure are some days that push me to the edge!

Anyway, I know I spilled my guts, whined and complained, but all in all, I am so very thankful that he made it home alive. 20 months to go before he can be evaluated for a liver transplant.....

(P.S. I have ran out of time and can't edit this post. Please forgive any spelling mistakes, grammar mistakes, etc. ;)

Small World

Need a funny bit of news? Ok, but I better back up just a bit.

My mom started dialysis last week, did I already tell you that? Anyway, on Thursday or Friday, I don't remember which, when they inserted the needle that takes the blood away and the other that returns it to the body, her blood pressure went down to 50/20. My neice said her eyes rolled back into her head...I guess she passed out. Anyhow, that isn't the funny part. The next part isn't the funny part either... her arm got infiltrated with blood. I don't understand how that happened, but some of you with more knowledge than I probably do. I think it had to do with the needle going through the vein instead of in it. But I *did* see the ugly bruise. And I *did* take a picture to show to you. If you are squimish you'll want to close your eyes and scroll down quick to see the funny part of this whole story!



Looks terrible, doesn't it?!

Anyway, on to the funny part. So she had to take the weekend off and go back at the first of the week.... and guess who she sat next to? This guy, only grown up!

So April, do I make you remember California a little? Rubbing shoulders with the celebrities...even if his shoulder is pretty darn small? Funny, funny, funny! "Small" world, isn't it? hahahahaha Sorry. I'll quit with the silly "little" jokes.

A "small" bit of humor is all I could muster today! =) Ok, ok, I'll stop now!

Another Quiz - Who are you?

As I read Eternal Sunshine's post yesterday entitled "Who am I", I decided to take the quiz too. It only asks 2 questions - each has 3 answers that you have to thoughtfully answer. I was pretty impressed with the answer, though, because it got "me" right. I showed Steve the results, and he agreed that yep, that was me alright.

I was told I am "Bette Davis" and as my real-life friends read my results they'll probably agree that the results are strangely accurate!


You are a Bette -- "I must be strong"
Bettes are direct, self-reliant, self-confident, and protective.

How to Get Along with Me
· * Stand up for yourself... and me.
· * Be confident, strong, and direct.
· * Don't gossip about me or betray my trust.
· * Be vulnerable and share your feelings. See and acknowledge my tender, vulnerable side.
· * Give me space to be alone.
· * Acknowledge the contributions I make, but don't flatter me.
· * I often speak in an assertive way. Don't automatically assume it's a personal attack.
· * When I scream, curse, and stomp around, try to remember that's just the way I am.


What I Like About Being a Bette
· * being independent and self-reliant
· * being able to take charge and meet challenges head on
· * being courageous, straightforward, and honest
· * getting all the enjoyment I can out of life
· * supporting, empowering, and protecting those close to me
· * upholding just causes


What's Hard About Being a Bette
· * overwhelming people with my bluntness; scaring them away when I don't intend to
· * being restless and impatient with others' incompetence
· * sticking my neck out for people and receiving no appreciation for it
· * never forgetting injuries or injustices
· * putting too much pressure on myself
· * getting high blood pressure when people don't obey the rules or when things don't go right


Bettes as Children Often
· * are independent; have an inner strength and a fighting spirit
· * are sometimes loners
· * seize control so they won't be controlled
· * figure out others' weaknesses
· * attack verbally or physically when provoked
· * take charge in the family because they perceive themselves as the strongest, or grow up in difficult or abusive surroundings


Bettes as Parents
· * are often loyal, caring, involved, and devoted
· * are sometimes overprotective
· * can be demanding, controlling, and rigid
http://www.helloquizzy.com/tests/are-you-a-jackie-or-a-marilyn-or-someone-else-mad-menera-female-icon-quiz

So go take a look at the "Are You a Jackie or a Marilyn? Or Someone Else? Mad Men-era Female Icon Quiz". It is pretty entertaining and insightful! And then come back and tell me who you are.

Have a great weekend!

Thankful Thursday::October 18

I've had another busy week. Surpised? I thought not.

So yes, Bill was home clear headed and feeling much better. In fact, all day on Wednesday he was telling me how great he felt. Then, on Thursday morning he called me from his bedroom on his cell phone; he was too dizzy to get out of bed and ask me to cancel his doctor appt.... Back to the ER.

His hematocrit was down again, indicative of internal bleeding, so back up to the SLC hospital again. Less than an hour after he arrived at the hospital by ambulance, we were told they would have to perform a splenectomy. Now. So we sent him into surgery with a blood pressure that was up a little from the 71/46 in the ER that morning before receiving blood products, a kidney that had just been blasted with contrast for the CT scan, and a lung that wasn't filling fully because of fluid build up between the ribs and the lung. I felt very much like I was sending a one-legged blind person into traffic... I hoped for the best, but worried.

After the surgery was over, I got an update saying all went well and that the surgeon would be up to see me in a bit. When he got there, he told me that the spleen didn't look quite as terrible in real life as it had on the CT scan, but that it was bleeding badly and the surgeon didn't think Bill would have made it to morning w/o the surgery.

His improvement is remarkable. The surgeon hadn't expected him to recover so quickly, but he is now back at home. Hopefully, this has been the last hospital trip for a while.

~~~~~~~~~~~~~~

In other news: Emily is in a school play, so after school practices will be our life for a while. What that will mean for me: Steve will be taking the kids to school and picking them up after work. I think I'll love my break from chauffeur :)

~~

Other than that, not a lot has happened. Just the regular day to day stuff...

I took Michael to Shriner's Hospital yesterday to meet with a orthotic specialist to help me adjust his braces so that they didn't rub his foot... he made him new ones :) So happy for nice, helpful people!

~~
I am feeling very spoiled! People in my neighborhood have brought me treats, dinner, and called to check up on Bill and me. I love feeling so loved :) (Thanks to all of you who have been watching out for us! :)

And thank you to all who have prayed and sent well wishes. I really feel it and appreciate it!

~~

Gratitudes:

For people who go out of their way to check up on us, pray for us, and lighten our load.

That Bill is making such a great recovery from such a scary situation.

That Michael will get braces that will work for his situation, for his orthotic specialist, and for Shriner's Hospital.

That Emily has the chance to be in the school play. I know that she will love it!

That the sun has been shining and the lighting is changing and creating such a new drama with shadows and light; I need to get my camera out and photograph it!

That Steve & I have been able to go on our walks/hikes in the foothills. They make all the difference!

For yummmy treats and wholesome meals. Why does food make so much difference in life? I can't explain it, I can just feel it. :)


For a husband that does his best to give me whatever I need. I hope that I return that to him daily; he deserves it!

For kids that hug me, call me, and let me know that they love me. It makes my world go round :)

For health. I think I take it for granted way more than I should! It is so easy to just believe it will always be there, but I'm seeing that isn't the case. I need to live each day to the fullest, because there are no guarantees.

For Bill. For the gratitude that he shows and verbalizes. He is a great guy.

For my family and friends who rally around. Life is so much better because of them!

I have so much gratitude in my heart today and so much to be thankful for. Thanks so much for all of the silent things that you do for me: read my blog (though I wish that you'd give a voice to that in the comments :) and pray for my family. I really appreciate all you do!

And I'm especially grateful for Heavenly Parents and Jesus. I am so thankful for Jesus' atonement that allows me to place my burden at His feet and have Him carry it for me. And I'm so thankful for Heavenly Parents - I know that most people just say God or Heavenly Father, but I know that there is a Mother there too & since my own mortal mother has passed away, I have been even more aware of needing my Heavenly Mother. Their purposes are the same, but the way that I feel about each of them is totally different. I need that nurturing influence just as much as the protective one.

The sun is shining outside today. I have been given another day. I am truly blessed!

Carpe Diem

This past week I have been suffering with a tremendous ache in my stomach. It caused me to go to the doctor, ER, and yesterday I went and got an EGD scope done. It appears that I have ulcers on my esophagus. The sphincter muscle leading to the stomach doesn't shut properly. The doctor, after scoping me, told my husband that if I don't get the ulcers healed that cancer is very likely. So. I am now taking the much-hated PPI acid blocker that he prescribed.

During the ER visit, the doc ordered an ultrasound to rule out appendix or gall bladder trouble. No problem with those organs, but it seems that my kidneys have abnormalities in them. After looking up kidney lesions, thinning, nodules, and cysts on the internet, I made a consultation appt with a nephrologist. The fun just never ends.

I was talking with my dad the other day. I am the baby in my family, so I am seeing the genetic possibilities as my aunts and uncles die from one thing or another, but typically not just from old age. On my dad's side, my aunts have cancer and my uncles have high blood pressure/heart problems. On my mom's side, lupus, kidney disease, & diabetes are standard. I told him that I have looked over my gene pool and have decided that I want to get out! That's right! Everyone out of the pool. Impurities have been detected.

I certainly hope that all of you had a way better week than I have! But, then again, it *could* always be worse. I am thankful that I felt pain and went to the doc so that they could catch my esophagus problem *before* cancer had attacked. And I am thankful that I *know* that I have kidney problems early on, so that I can baby my kidneys, and hopefully not be in renal failure like my mother is.

Carpe Diem!

Update on Bill::June 30

Update on Bill: I was way too tired last night to do an update any justice, so here goes:

He had the TIPS procedure done yesterday morning, and everything went well, as far as we know. Nobody from the procedure team talked to us, so we had to go off of what the nurse told us. (and sometimes nurses just get treated on a need to know basis - so often they don't know either. very frustrating!)

Two different doctors at two different times explained the TIPS procedure and what it does by saying that they kind of "roto rooter" a path through the liver to allow more blood to flow through, to ease the pressure that is going on. Because most of the blood just flows through that "opening", it doesn't get filtered correctly, and the result can be encephalopathy. (http://en.wikipedia.org/wiki/Hepatic_encephalopathy) Like the article that I linked to says, they try to control the effects of the encephalopathy, which is displayed as confusion, with lactulose and certain antibiotics.

Last night, Bill did seem a little confused, so I made the nurse and the PA aware of it, and they kept a close eye on him last night. The nurse said that he didn't show confusion during the night, and I'm very thankful for that, but sometimes confusion can only be picked up by family members, since they know the patient better and realize when they aren't acting like themselves. I will go back up today and spend some time to see what I can see.

The second issue that was discussed yesterday is that Bill's cancerous tumor was larger than the docs had planned on, measuring 8 cm instead of 6 cm, and that they found some cancer cells in the renal vein, but not as far as the inferior venal cava. What that all means is that they are concerned that he has a higher than average of recurrence of the kidney cancer; they explained that kidney cancer can be found in many areas of the body, not just in the kidney, since it travels through the blood stream. The areas most likely for recurrence to occur is the brain, lungs, and sometimes in the bones.

Because of the higher than average possibility of recurrence, Bill will not be a candidate for transplant at this time. They want him to wait for 2 years and then be reevaluated for a transplant, looking closely for cancer at that time.

The issue at hand is if they gave him a liver right now, and there was even 1 or 2 cancer cells floating around, when they gave him the anti-rejection meds, the cancer would go full blown very quickly, since the anti-rejection meds lower the body's immune system and the ability to fight off threats to the body like colds, flu, and cancer are so low to none.

It has come as a hard blow, though, since we have planned on transplant being a back-up plan after surgery, since surgery is hard on the liver.

Another problem right now that the docs are working on is his kidney function, which isn't very great right now.

Assuming that a person has healthy kidneys, working optimally, they would say that person's kidney function was 100%. Take away one kidney (which is what Bill just had done on Monday the 18th to remove the cancer) and you are left with 50% kidney function. Bill's remaining kidney is struggling a little bit right now, and is only functioning at 30% on a good day. The nephrologists are working with him to help get that kidney functioning better and to ease some of the burden from the kidney with medication. They are hoping that once the newness of the kidney removal surgery "wears off", the remaining kidney will rise to the occasion and start working optimally; very often, the doc said, the remaining kidney will start functioning at over 50%, to try to make up for the lost kidney. That is the kind of recovery we are hoping for.

A lot has happened to Bill in such a short time. I hope that all of you will pray for him, or continue to pray for him if you have already been doing so. I hope that his body will heal from all of these traumas placed on it and rise above its obstacles and do well. I hope that in 2 years he will be cancer free and we can look back at this time in amazement of his progress.