Why does summer time go so fast?

Well, summer is almost over. I go back in less than two weeks. This has probably been one fo the most uneventful summers ever. Honestly, we've spent most of it at home. My daughter plays with neighbor kids almost all day and I get nothing accomplished. She's having a wild child summer.  Friend time has been extremely limited this summer. We do have a couple fun things this week, but honestly that is it. She did get to go to camp last week and swam in the lake.  She was very excited about that.

 I had my yearly meeting with St Luke's Transplant team, now all the testing will happen again. They said it will still probably be at least two more years before I get a transplant, unless I find a live donor. In the meantime, I feel like I'm withering away. I've had an infection almost all summer. I find out later this week if it's still there. Thanksfully, it has only meant a few days of true pain. I have felt drained though all summer and my motivation is slim to none. I'm pretty sure I have another hernia, but so far it's not to bad. I can no longer regulate my tempature. I either am hot or cold constantly and it changes every minute or so. My newest horrid symptom is my skin hurts. My arms and top of my back are painful if anything touches it. Overall the numbers of my diet intake have been ok, except I apprently don't eat enough protein. Now I'm supposed to drink this stuff every few days to get more....but it's gross and I keep forgetting. My actual kidney function is down to 6%. 

 While I hate my machine, I know I'm lucky to be able to do it at home and to still be able to do things. While exhaustion, loss of motivation, and some bad days...over all I'm lucky. I am trying to be better about limiting myself and knowing when I have to say enough. Mostly I've just felt blah all summer. I'm not sure how I feel about going back to work, but it's coming anyway. I have new bosses again....so that adds a level of anxiety.

We moved our ducks a week ago. I'm really proud of my kid for how well she took care of them for those 6 weeks. It was definately time for them to move...but it was fun to watch them grow. And she will probably always remember doing this. She wants to work with animals- like a rescue or something so it was good practice.

I did see many of my closest friends this week so that was fun.  I got to do.an escape room for the first time.   We accomplished the mission in really good time.   I'm very thankful for the friends that put up with me.

Please continue to send prayers and good thoughts my way.   All the little things make such a differece.  I appreciate everyone who has supported me in any way.   I hope everyone is finding some joy in each day and finding ways to stay cool.

My ducks are NOT in a row!

 Sadly we are at the half way point of a very short summer (again- not paid).  It has been a crazy few weeks and as a teacher, I just now feel like I'm semi relaxed and feeling normal.  

Summer started with peritonitus, followed by a semi severe allergic reaction to one of the medicines.  Thankfully, just a horrendous, horrible rash that has finally started to completely disappear after two weeks on steroids.  I did go in and have my tube looked at to because of massive pain when doing the medicines.  Yesterday, my cat who has never even noticed the cords got mad at me for not paying attention to her and bent over and bit straight through my tube.   It was a part that can be replaced and after a quick run to the dialysis center and a new prescription for strong (different) antibotics and a near death experience again in my car, all is on the mend.  On the bonus side, I won't get maleria for the next week or probably anything else.

. 

I don't want to point fingers...
but this is the guilty party.

Summer has consisted mostly of hanging out at home.  My daughter plays with neighbor boys and this week we had a play date with new friends.  Yay.   My biggest news is- it's been 2 years since my cancer diagnosis so the doctor technically classifies me as cleared.  She is smart though and will continue to monitor until I get a kidney so I will see her once a year.

We've been home way more than usual, because. well honestly...dialysis is very expensive even with insurance.   Though I did hit my own personal max out of pocket faster than I ever have.  The kid has been swimming and she did do a week of her first camp ever while I worked one week.   She got to do that with her best friend and they didn't get kicked out so I call that a win win.  I am trying to do stuff with her while I can, but humidity does not like me.  I'm still determined to try though.

Eggs in incubator-
rocking and rolling

As many know, we are animal lovers here in our household and honestly it's probably good we don't own our own house.  Our biggest adventure is currently our ducks. (ha see the title did have something to do with my blog).   Long story, but we basically ended up with 4 abandoned duck eggs and a new cheap incubator as school ended.  I have actually never candled and watched babies grow in the eggs and it was a fun experience.  However, after losing an egg, somehow the eggs became real ducks.  So now I'm living in a semi zoo/farm setting.  How does this happen?  One day I'm a single person and now have a kid, dog, 2 cats and 3 temporary baby ducks.  I'll admit they are cute and my daughter is doing amazing about taking them out side and 'teaching' them to swim.  They are currently 3 weeks and she is there mamma and she is proud.   They even have cute personalities.   We are pretty sure we have 2 girls and a boy, but it's hard to tell.   As long as she continues to help care for them and they are doing ok (honestly we have no idea what we are doing)- they will be with us for a few more weeks, until their feathers are mostly changed over and are ready to be unsupervised outside and in water.

They like to party at about 5am and of course she doesn't hear them, but as long as they have food and water and some attention they usually are pretty quiet.  Messy, but quiet.   Oh and they eat alot, which may be while they are growing so fast. While we would love to keep them, we are ill equiped for that.   It's keeping her and the neighbors busy though and they are having a fun summer.

Other updates:  still on dialysis every night, still praying for a kidney.  I have my yearly meeting with St. Luke's in a couple weeks- to make sure i still qualify...I guess.And probably more tests to follow again.

How can you help:  

• If you are interested, you can get tested to donate a spare kidney- you only need one.   Feel free to go to the St. Luke's page and fill out this form.  https://www.saintlukeskc.org/form/saint-lukes-hospital-living-kidney-donor-screener
• Dialysis is unfortunately, very expensive.  I wish I were rich, I wish insurance covered it all.  Unfortunately, even with insurance, I'm left with a $7000 billl that came all at once.  Thankfully with kind donations and my savings, I've been able to pay my med bills the last couple years and up until now.  I've paid it down to the last $2000.. However, I'll be honest, I'm struggling still.  It's all overwhelming and I hate that I can't do it all on my own.  If you feel moved, donations to help cover med bills are always welcome.  You can venmo me @thtr4life (code 2978) or my cousin does have a gofund me set up https://www.gofundme.com/f/uaysp-help-save-cassies-life.   or you can send it to me via mail.
• pray and send good vibes.  Pray for health, the ability to continue living and loving life, and that a kidney donation will come and it will all work out.  honestly, the most important as I have loads to do and a child to take care of.
• tell your loved ones, you love them.  Don't miss that opportunity and know that you are important and loved too.

I'm leaving you with this parenting tip:  When your kid hits double digits, don't screw up buying the birthday candle a year younger.....especially with a sassy preteen.   :-)

School is out! Infections are in!

Well another year has gone and I survived the entire year on dialysis. Was it easy...no not most of the time, but again it could have been worse. I made it through another show! Next year I'm moving my musical rehearsals to after school and I think that will help immensely. I'm ready for a break and am so happy it is summer....just a reminder for those who don't know--teachers are not paid for the summer..or for any breaks. The school year went pretty well and except for a few days I was able to make it through. I thought I was going to have 2 whole days to add to our sick bank leave, but this week did not go as planned. I have my first infection of Peridontis. It's common with PD and they said I'm lucky I haven't had it already. Let me tell you, it is not fun. For me it's been a lot of stomach area pain. The medicine requires putting extra fluid on in the morning and that makes it almost unbearable. So the last few days of school were rough. I also had to go back yesterday and get retested for something and then again next week. They are still waiting on cultures to come back and tell them what kind of infection. Thankfully I am pretty sure it was caught very quickly. I also discovered my iron is pretty low so they are going to start giving me iron, but can't until after I'm off antibiotics. I'm hoping that will help with my exhaustion. 

all my medicine for one setting

 Overall I'm doing good, just need to kick this infection and don't overdo it, which is harder than it seems. I'm ready for a semi relaxixng summer with the kid. We don't have any real plans, except I'm working one week. We are going to have to keep it pretty low key and we need to do some major house organization and cleaning. And hopefully we will spend time with family and friends. 

By the way I really appreciate the people who always check on me or have helped me out. those who have donated to me, I really appreciate not having to worry about my deductable last year and while I was dealing with cancer. It's hit this year at once-dialysis is expensive. Thankfully I had enough to pay off half of it and I'm trying to figure out the rest. Our deductable went up a lot this year, but at least I guess I have issurance to cover most of it, but I definately see how people go into bankruptcy so fast. If you have some change lying around and you are like "I don't need this" haha, feel free to send it my way via venmo @thtr4life (verification #0416) or gofundme that my cousin set up. All funds will go to my medical bills. I wiped out my savings to pay for what I could so any over what I need now will go into savings for transplant travel/fees. Also if you are interested in donating your kidney===please check out my pinned post. I really do want to stick around longer at least for the kid. 

 I don't think I can every repay the kindness people have shown me, but I sure will try. Thank you everyone. may you all have time to play and enjoy the sunshine this summer. Now I'm off to take a nap.

My kitties!

One Year of Dialysis

Well it's official. I've been on dialysis for a little over a year now. I'm thankful that there is something that can keep me well enough to continue with most things. The worst is being forced to a contained spot so early at night and traveling with that machine. For the most part it isn't horrible. Some nights my legs cramp (today I'm hurting everywhere) and I struggle to sleep, but I can live with that. I know I've been so lucky. I finished all the yearly tests that are needed for the organ list....never would I have ever thought that I would need an organ. Everything has come back ok. I'm struggling a little more during show times to keep my nutrients correct, but so far nothing has been completely out of the range it should be and usually we can pinpoint why it has risen. Overall, I'm just exhausted and find I have limits---especially with lifting and moving to much. Still kicking life's butt though. Since the last time I posted, I've traveled 3 times with my machine and supplies. Thankfully this time all driving. The supplies take up my entire trunk. I did figure out I really need help moving the machine case in and out of my car....it's so heavy. I thought I broke it in January when I left it in the car to long in the cold....oops. Thankfully I did not. Unfortunately I do fear my kidneys are getting worse so for spring break my daughter and I went on a 'Safari' in Oklahoma. I got paid for my festival work for the first time and we used part of that money for the trip. I'm a little afraid I'm going to get to a point where I can't do as much with her and she is such a good kid that helps me out. We visited 7 animals places in 3 days. Almost everything was interactive so we got to feed foxes, play with wolves, hold a skunk and possum, hold a fenneck fox and feed bats. There was so much more. I chose to stay in the same hotel during our stay and drive to all the places so we didn't have to tear down the machine everyday. We did a good amount of driving, but it was so much fun. My daughter's favorite was the wild mustang horse ranch. It was pretty cool. New goal - own lots of land with wild mustangs and a wildlife refuge. I'm doing rehearsals after school till the last two weeks of them for our spring show and that has helped a lot. Poor dog home for so long.

I'm still awaiting a transplant and still hoping a live donor comes forward. And still praying it happens in the summer....I don't think we would survive without my work pay. I'm so glad to have a study income and a place to live and the ability to still survive. Please continue to pray for me (and my little- as she doesn't always understand when I can't do something) I appreciate you all.

Happy Christmas!

Being a single mom at Christmas already comes with some challenges, but add being tied to a machine and boom...whole new level achieved.

First I apologize for the few that do read this. I'm horrible at it and also in reality not much to report. I'm still on the list. I've been doing testing for this year - yay not as much as last year. I've been on dialysis now for 7.5 months. I made it through my musical--barely and only missed work due to one sick day for myself and some doctors appointments. Our show went good, the last two weeks were rough as I needed to get home and be on the machine. Thanks to some help, I was able to do it all but about 2-3 nights, where i cut it close getting to school on time. I think I was only late one morning and made it before class started. This time around I felt like I literally had no time left to add anything so that was a little stressful. BUT we made it and enjoyed it and said goodbye to the show! Christmas has been the most challenging----how does one do Santa when you can't leave your bedroom at night and your kid doesn't sleep much. I was actually really worried on how this was all going to work..but it happened too and the kid is none the wiser. Although today she said Santa didn't eat a cookie and didn't leave a note...so she suspects it might be just be me. :-( I know it's probably the last year of that Christmas magic, but currently she still very much believes. And Santa got her a drum pad thing...which I told her no drums. HA HA HA. Keep them guessing. She also got a Karoake machine from her grandparents/uncle....lucky me. Let me tell you about this little girl though (well not so little). She is the most kind hearted kid. She honestly didn't care if she didn't get anything on her list or anything at all. Would she have been dissappointed in reality..yes. However, she was greatfull and excited about all of it. She was very sad she only had a cool picture for me. I loved it though. At one point she said she was happier about the books than the toys..go me. Overall a lovely Christmas with her, my parents and brother. I miss our big family gatherings a lot during the holidays especially. I'm so greatfull that I still see my extended family off and on, even if it's not all together. What you really are here for is an update on my health. Still cancer free...thank goodness. No new surgeries! I'm just in a hold pattern. Most of my blood tests are still holding pretty good, my kidneys are still functioning some, and dialysis seems to be helping all of that. During our show time, I was done by the end of the week and crashed most of the weekend. I still tire and do nap on Saturday, but not the whole day anymore. I'd probably be better, but sleeping at night isn't always restful. I'm still very blessed with overall feeling pretty decent. Everyonce in a while I kind of hurt, walking wears me out somedays, and sometimes I feel a little ill. I'll take that over stories I read about. I'm pretty sure my kidneys are still growing so I know I'm extremely lucky. Most of the time I don't feel like I'm in end stage kidney disease. I know listening to a person who has long term illness is no fun and I like everyone wish this was a short term problem. I'm still trying and fighting each day...some days literally I'm yelling at this dialysis machine. I can't even begin to tell you all how much I appreciate each and every one of you who has asked me how I am or supported me with prayer, time, or financial support. This year was so much easier going through this without having to worry about my max out of pocket and where it would come from. I am so thankful for all the support that is given in so many ways. Honestly I mostly appreciate knowing people care. I hope everyone else has had a fabulous Christmas or holiday season and as we enter a new year- may next year bring happiness and health to everyone.

Traveling on Dialysis

Well, I did it. I made it on a plane (twice) and to my destination with my machine! I'll be honest...traveling was not easy. The machine has a suitcase that is huge and then I had another one with my clothes and supplies. Thankfully my bags of solution were delivered to my hotel. I DID NOT take all the supplies I was supposed to though as I would not had made it.

I flew from here to Minneapolis. I took a direct flight on purpose. I was supposed to be able to take the machine on the plane, but we were on a small plane and tney checked it. I also forgot I now have permanent metal with my tube.oops. Then I walked what felt like 10 miles from the plane to baggage claim and hopped on a train to downtown and walked 4 blocks to the hotel. Not to bad except the suitcases kept running into things and the sidewalk wasn't real smooth. But I made it! Thankfully on the way home someone helped me on the escalators with my bags. It would definately be easier with another person. Also I'm not sure how I'd do it if I was gone longer than a couple nights. Overall, the trip was great and I didn't miss out on anything because of the machine. By the end of the weekend though, my body was done. The following Wednesday I couldn't move and had to stay home (a huge argument with myself to do so) and crashed all day.

My health is ok. I'm keeping the numbers they watch were they are supposed to be. The last I knew of the function of my kidneys was 8%. That's scary to think about...so I don't. We are in teh part of the year where I do not have any free time or enough time and a million things happening at once. I'm trying so hard to keep doing activities and spend time with my kid which has to happen on the weekend...but I'm also noticing I am starting to have limitations. By the weekend I'm ready to crash and need some extra sleep. Last week I made it to Thursday before I felt that way. I was very thankful that my rehearsal could continue. Of course my stress level skyrocketed when the engine light started coming on in my new car. So far outside of my kidneys, everything else seems to be healthy. I know my kidneys have grown and I'm hopeful for a transplant. I've hit the time of year to renew all the tests and keep getting calls for new ones. An MRI two weeks ago, a CT scan two weeks from now, lots more doctors visits. My cancer doctor told me everything for her is looking good. The other big health thing is I finally got diagnosed/dealing with ADHD. I'm 100% sure I've always struggled with it but my life had become chaos chaos instead of organized chaos and I was really struggling. After a in depth conversation with my doctor, we decided it was time to try medicine. I have always described my head as a busy train station...i don't have one train of thought or the more modern version---I have way to many browsers open, one playing sound that I can't find and using them all at the same time. (which yes is also what the actual computer looks like). The first day of the lowest dose, my head quieted down. I actually closed real computer tabs. I could seperate my tasks. It was such a weird day. I kept wondering if that's what other people's heads were like. The 2nd day I took my kid to the state fair and we lasted almost all day before it all drove me nuts. I usually get so overstimulated and now I don't as much. While I'm still exhausted, I'm not as mentally exhausted when I come home. It's definately not where it could be I"m sure which is why we are moving my dosage up this week to try a little more, but it's amazing what difference I've seen. The ability to quiet my head some has been the most awesome and not getting so overwhelmed. What I'm saying is if you feel that way...don't push off solutions. Keep thinking of me and sending good thoughts. I'm hoping a kidney comes available sometime soon. (though summer time would be the best!!!). i appreciate and love you all!

Summer is over, schools in session!

Perhaps this blog wasn't the smartest idea. I don't keep up on it very well. Summer is officially over and we have now been back in school for what seems like months but is really only about 3 weeks. I'm very much looking forward to a 3 day weekend. I have now been on dialysis for over 5 months. Overall it's going well. I hurt sometimes and am still tired now that school kicked back up. I hate having to be tied to it for 9 hours a night. I'm struggling trying to figure out how that's going to work during show time. However, there are much worse things that could be going on so I'm not complaining....much. The week before school, I had a hernia repair surgery. It was just above my belly button. It seems to have gone well except I figured out I can't have the pain meds they have been prescribing after surgeries so we will have to try a different one next time. It basically was giving me what I call body terrettes at night. It was kind of scary.

I also got a new car right before school started since the other one was totalled. I'm glad I got one before school started. I love it and so far it's been good. I got more money than I paid for the other one so had a nice down payment. Yay! I'm still on the kidney transplant list and have a lot less tests this time around. I can't thank you all enough for the prayers and love you send my way. Also for the financial donations people have been so kind with. Dialysis is very expensive....thankfully insurance covers most of it. This week I got a $3000 bill from when I started in March. While I'm sad to have to pull that much out, it's so nice to not have to freak out on how to pay it. I've been able to keep up on my medical bills this year and honestly I don't know how I could have without the go fund me and donations people have so graciously given. So why I absolutely hate being in this position, thank you so much. I'm looking forward to a busy and exciting fall semester with a show that I'm really excited about directing. Just have to figure out time management. :-) AKA getting home in time to get on machine to get up in time to be back at school. And I'm starting the year with sick leave so I should be able to attend my doctors appt.

Summer finished well. The kid and I went on an overnight trip where we used the state's program to get into some activities. That was nice to spend a couple days with no one else. I think she had fun. I'm trying my best to make sure we are still doing activities. I honestly don't know what I would do without her. She is such a big helper and spends a lot of time at home playing with neighbors. She doesn't complain much when I have to rest and helps me set up my machine. She refuses to let me carry heavy stuff since I'm on weight restrictions again. She's a great kid.