Graduation & Celebration Video

Graduation Ceremony & 5th re-birthday celebration

May 2020- see bottom of page for June entries

May Day has a couple of different meanings. One is the tradition people used to participate in that involves leaving flowers for someone anonymously- or at least that is my understanding.  The other thing that comes to mind is May Day May Day- meaning you need help. Yesterday was one of those days for me but it was the last day of April. I had a Telehealth appointment with my endocrinologist who broke the news that part of my pituitary gland no longer works and it will never recover. I knew I had adrenal insufficiency and I have been on hydrocortisone since I’ve been off Prednisone. What I didn’t know was my pituitary gland is partially dead and the other half can also fail. The doctor told me this over a crackling connection of Telehealth. He was ill-prepared to deliver the news in a well thought out manner and left me with many questions.

He told me I have to get a medical alert bracelet stating I have adrenal insufficiency because if I am ever in a wreck or get sick I must have steroids. He also said I have to have injectable steroids on me at all times in case of an emergency. I’m not sure what constitutes as an emergency other than fevers.... He said this is a very serious condition and he succeeded in freaking me out if that was his intent. I’m sure it wasn’t his intent to scare me, but he left me with so many questions. 

I was angry after getting off the phone. I am almost five now (transplant age) and I am fed up with medical problems. I am less angry today- just confused. I believe God will heal me of this despite being told there is no recovery. I am done with complications. I didn’t survive leukemia to die from complications after graduating with me MSW! The doctor thinks it’s the Graft Vs Host Disease that caused my pituitary gland to fail.

5/3/2020

I have decided I don’t believe the blood tests. I refuse to believe my pituitary gland has failed and I am asking for a repeat blood test next month.  I see my endocrinologist again on Wednesday to discuss my diabetes which is out of control. He said we didn’t have time to continue our Telehealth appointment last Thursday.  Somehow I am going to get all of my organs working. 

Patrick’s yells and moans kept me up most of the night. He is even sleeping in the loft but he is extremely loud. Last night he went fishing and I went to sleep fairly early- maybe around 9. I woke up to hearing people outside my cabin caLing, “Come here, Kelly. Kelly, come on!” At first I was thinking, “do I grab my gun?” But it took me just a moment to realize the stray dog that refused to leave our cabin the past few days is named Kelly. I was not pleased to be woken up. Seems when Patrick got back from fishing, he drove right to their house to tell them their dog has been here. What he should have done was put the dog in his truck and drive him down there. Because when this couple was prowling around outside my bedroom window yelling for “Kelly”, the dog was somewhere else- he had left when Ringo and I went to bed! I feel bad for the dog because they chain it and he keeps breaking his chain to come here. This happened last summer as well. The dog is pretty thin so I fed him last night. To thank me, he took off with Ringo’s dog bowl and I can’t find it!

There will be an online commencement today for UAA and I plan to watch. After that, I have a Zoom meeting with two people who I work with to plan work sessions for the Garden of Reflection. Unfortunately, due to being in Kasilof so much in the summer, I don’t spend as much time at the Garden as I should as a founding member.

I continue to be involved in addressing the needs of returning citizens, even though I have completed my grad program. I’m in the middle of organizing a webinar for probation officers to understand the needs of women who renter society after incarceration. I enjoy this work so much and it keeps my mind fresh and active.

I will never be one to sit around and do nothing. I was pleased that I got some physical work down yesterday too. I used shrub pruners to chop down dozens of seedling trees on the bank. Patrick tied a rope to the beam of the cabin so the girls could propel down the steep cliff. The seeings and brush made it difficult for them to maneuver down the slope so I am determined to clean it up. What started out as one area, will end with the entire bank being trimmed. It will take days of working and a chainsaw to finish. Patrick doesn’t trust me with a chainsaw so he may have to do that part or teach me how to use it safely. I feel so free- no more papers to write!

5/4/2020

Sleep continues to elude me. I have been awake since 0200 and left the cabin at 0500. I am back in Wasilla and exhausted. I know I can fall asleep easily, it's the staying asleep that concerns me.

Tomorrow I have nothing on my agenda besides paying bills and yard work. I will take it easy and nap when I can.

5/5/2020

I figured out a way to get some sleep. When I woke up at 0200 this time, I took a pill my oncologist gave me to help me sleep. I went back to sleep around 4 until 7. I feel as if I tricked the sleep-depriving demons! I haven’t gotten out of bed yet- I feel so tired. But, I will and not the sun is shining so it should be a good day.  

5/6/2020

Yesterday was a good day. I did not leave my house via car at any point. Debbie came over and we practiced physical distancing while walking our dogs throughout my neighborhood. We got in about 3 miles and I felt good. She commented on how much better I am walking which made me feel satisfied in my recovery.  I also mowed my lawn last night! I wanted to get the leaves up and although I had spent a lot of time raking and emptying the wheelbarrow, I felt a mower would do a much quicker and easier job of it.  Today I will need to water the grass so it will turn green. It is extremely dry right now.  The Valley has already seen some wildfires so I hope everyone will be careful.

Ollie called me yesterday to tell me she was working on the deck with her daddy but her sisters were inside watching TV in the loft.  She's so cute. She loves to help her dad with projects. The other two don't have as much patience, but they are also younger than she is.  I think Ollie enjoys the attention she gets from her dad. I love it when fathers are patient with their children. Patrick was that kind of father to our children and they learned so much from him.

We are hoping our nephew can come up from Colorado to help us with the RV Park.  Patrick cannot do all of this alone if we plan on opening anytime soon. I hope Matt can make it as he is a great worker- smart and knowledgeable.  I can do the business side of things, but my physical abilities and knowledge of building are very limited.

I have 3/4 grades back now and so far all A's.  I only got 2 points off on my final capstone paper and 3 points off on my practice evaluation paper. That one worried me because the professor of that class is the hardest grader, and the paper was research-oriented which is not my strength.

I cannot get a new sensor to work for me today and so I will need to call Medtronic.  It seems there might be something wrong with my charger. My blood sugars are still out of control and I really need that sensor to work. Darn medical stuff anyway!

5/8/2020

The leaves are popping out on the trees reminding us that summer is coming soon. The grass is starting to green and the birds have become chirping. It's beautiful out and we have been fortunate to have some warm weather.  With summer comes hope; a hope for warmth and sunshine, hope for good times with friends and family, and hope for a future without COVID-19.  

Casey and I spent years watching the trees eagerly awaiting the emerging of the leaves. Each day, starting usually around the end of April, we would begin our observations in sheer eagerness.  Every year we would all of the sudden see the leaves emerge and ask each other if we had missed them or if they had just come out overnight.  It was a fun tradition to share with him. Casey and I have a lot of shared common interests.  He's in Texas so he is not here to share the beginning of the Alaska summer with me.  He's at a new treatment center and it's my heart's desire and fervent prayer that this experience will be even greater than the beginning of new leaves and flower blooming.  It is my hope that he himself blooms with healing, love, and growth.  I love watching new life come up from the ground, but watching him have a new life free from addiction is the best gift I could have.

5/8/2020

We kept Ollie and Boe last night. Boe (at the age of 2) actually drove the motorized go-cart around by herself. I was a nervous wreck but no one else seemed concerned. I think I worry a lot.  She said, "I can't turn it around by myself!" Ailynn had a meltdown before they left their house so she didn't get to spend the night, unfortunately. We missed her.  Meghan has already picked them up today and the house is quiet. I do need to go and put everything back in order. It's amazing how messy it gets when they visit. I had them make a Mother's Day card for their mom and added an extra piece of paper in there for Ailynn to make one too.

I got a very sweet Mother's Day card from Casey and it meant so much to me. I treasure all things from my family.

5/10/2020

My fatigue level has increasingly worsened these past few days. I've been absolutely exhausted.  I woke up at 0500 this morning, did a few chores, took Granny medicine, then came back home and went to bed.  At 1 PM I met Dorothy and we went hiking. I was surprised and pleased that I did really well on the hike.  Maybe I just need more exercise and sunshine. It's so beautiful today and tomorrow is supposed to be even more beautiful.

I'm going to make Granny blueberry waffles for breakfast tomorrow to celebrate Mother's Day. Meghan and the girls will meet me over there and the girls can run around outside while Granny and I sit on the porch and admire them. She sure misses them as she has not seen them for several weeks. 

I miss my mom and wish I were with her for Mother's Day.  I sent her gift a few weeks ago and of course, I will call her. I love my mom very much and I'm incredibly thankful for her.  I will also call my dear mother-in-law. I am blessed.

Patrick left me a card to open tomorrow along with some much-needed yard tools I told him I wanted. He's at the cabin working hard on the RV Park.

I got my ticket for my Mayo Clinic trip. I am leaving June 29th and will return on July 1st. I decided to fly Delta since it's a non-stop flight. I think that will be safer for me.  The last thing I need is to be further exposed to germs by changing planes in Seattle or Oregon.  The fewer people the better for sure.

5/11/2020

Today is my mother's birthday. My mom is a wonderful mom and I love her so much. I wish I could be with her today to celebrate her 78th year. She was the middle child and outlived her siblings.  She is a strong woman of great faith and an inspiration to me for sure.

My awesome non-stop Delta ticket got changed to a layover in Seattle. I am an unhappy customer. The only reason I went with Delta was because of the non-stop flight. The email I got said they would do a "credit for two years" if people decide to cancel their flight.  I don't want credit- I want my non-stop flight or my money back so I can fly on Alaska Air. I'll have to make a phone call to them today and see what we can work out.

I made Granny, Meghan, and the girls blueberry waffles and eggs and took over to Granny's house. The girls played outside while Granny watched them from the porch.  She enjoyed seeing the little ones and they enjoyed being there. It was a beautiful and sunny day.  I could tell Granny seemed exceptionally tired yesterday. She said she didn't sleep well. It must run in the family!  By the time I got home, I was also feeling extreme fatigue and took a nap.  I never did feel energized and fell asleep watching TV after that. I finally went to bed and although I woke up a few times, I slept quite a bit until 0430. I don't know if it's the adrenal insufficiency wearing me out or what. All I know is extreme exhaustion is no fun.

May 14, 2020

My 5th rebirthday- transplant anniversary, the day I will always remember and be thankful to that mother in France who donated her baby's umbilical cord stem cells. That little French baby saved my life and I am here today because of the unselfish decision his mother made to donate the cord after his birth.

Last night I was overcome with emotion and cried quite a bit. I have a variety of emotions.  First, the gratefulness of being alive, second, the MSW graduation ceremony I am having via Zoom tonight, and third, perhaps the most significant of all is remembering Logan and his journey.  Yesterday I received a video through email from Be the Match.  It was a video I was part of in October when I went to the Leadership Ambassador Training in Minnesota. The video was about Logan's last day on earth.  It was a hard topic for me to discuss and certainly hard for me to watch. The fact that it came the day before my own anniversary of transplant is ironic, but seems to be from God. God's timing is amazing.  Combining all of those three things together made for one emotional Kelly last night. Today I still feel a bit unsettled, but also happy. I'm happy to be alive and well and I must say I AM proud of myself for overcoming so many obstacles and graduating with my MSW through it all. God sustained me and I never gave up. I have such a wonderful support system and I am thankful for everyone who is part of my life. I am grateful for all of the prayers, calls, emails, texts, and other forms of encouragement.

God gets all of the glory tonight as we celebrate these two milestone events.

5/15/2020

I posted a video of my celebration above and I hope you can view it. We had so much fun and it truly was a special day of celebration! Ollie and Ailynn Were so proud of me and excited and it just made the whole night that much more fun!

Thanks for all of your support!

5/16/2020

We kept the girls on Thursday night. I had them for 24 hours from the time Meghan dropped them off to when she picked them up. They left around 2:30 PM and I didn't leave the couch until I went to bed around 9 PM. In between those times, I sporadically napped. I was hit with EXTREME exhaustion!  They wear me out but they sure were enjoyable to have.  We spent some time outside yesterday. They played and I did some yard work. It was a gorgeous and hot sunny day. I wanted to take Ringo for a walk but I could not summon the energy.

This morning I will be going to Granny's to give her pills to her and breakfast. Then, I have to run into Wasilla to work at the Garden of Reflection. We have organized a work party to prepare the flower beds for planting. I hope enough people show up so it won't take too long. It's not that I mind, but we do want a lot of grieving parents to participate.  It's a way to bond with one another and share that camaraderie of losing a child to death. I do this in honor of my baby boy, Logan Joseph Marre.

5/18/2020

The Garden of Reflection cleaned up really nice.  We had a fantastic turnout of people and we are ready to plant in a couple of weeks.  I'm grateful to Mark and Sharmin for donating the flowers each year from MidValley Garden and Greenhouse.  Their flowers are amazing!

Yesterday I got to see my cousin David Lee again. He and my uncle came to visit Granny.  Holly and I hope to run into Anchorage tomorrow night and have dinner with him before he heads back to Louisiana. David Lee, Holly, Mark, and I used to have a marvelous time at Granny's when we were kids.  We would explore the woods for hours and hours.  When I watched my three granddaughters playing in the woods at the cabin, I was instantly taken back to those wonderful childhood memories.  I was taken back to the days when kids actually used their imagination and got lots of exercise, rather than sitting in front of a computer screen. (Like I am doing now hahaha)  Those were the good ole' days!

5/21/2020

I made it to the cabin last night. It was a long drive and I was so tired. About 7:30 PM I heard the pitter-patter of little feet. My girls are here! Ailynn threw herself in my arms, followed by Ollie. Boe was still With their parents parking the 5th wheel. They are doing a trial run and now we know we need to modify our parking spaces. I look forward to a fun weekend with them.

5/23/2020

Its been a whirlwind that is for sure! Meghan, Kirk, and the girls will head back to the Valley today. I had offered to keep them down here for the weekend, but we have so much going on I decided it would be best to keep them Tuesday and Wednesday when we get home. We will have more quality time to spend with them. Meghan also decided she and Kirk will be driving to MT and CA without the girls so I will get them for a week or so while they drive. I’m thrilled about that. Patrick will be at the cabin with our nephew Matt. Patrick hasn’t reserved an excavator and I am so worried not one won’t be available when we need it. We have so much work to do.  It was awesome that Kirk drove their 5th wheel here because being we know what’s needs to be changed as far as RV spacing goes. Since theirs is 43 feet long, it gives us valuable information.

It is supposed to rain all weekend which is such a bummer- especially for Patrick who will be working in the dirt. 

I had a Telehealth appointment with an ENT the other day. He recommends allergy testing. I keep having problems with hoarseness and reoccurring sinus problems including a very gunky left eye. Based on past CT scans, surgery may be a possibility in the future. I have had one sinus surgery and swore I’d never do it again.

5/24/2020

Rookie mistake for me yesterday. I forgot to take my meds until the afternoon. I recently discovered that taking my hydrocortisone earlier helps me sleep better at night. I kicked Patrick out of bed around 11 because he was snoring. That sounds so mean, but it’s easier for him to leave than me. I have to take two medications with me, my glucose monitor, and my eye drops. I woke up again at 0200 and have been steadily awake since 0330. It’s now 0530, and I just took a pill to help me sleep. I hope to get a few hours in so I am not falling asleep in the middle of the day. Yesterday, I felt so exhausted. I am not sure if it’s strictly my cortisol level or a combination of that and having the girls here. They do wear me out! I also did some cleaning on our bank- pulling weeks and cutting down small sticker bushes. While it is good to accomplish things, I wear out pretty easily.

The Bear Den Cabin is coming along nicely. Next time I am here I will be able to set the bed up. We just need the septic in and the electric lines to the cabin and it’s ready to roll! I ordered a few things from Amazon to finish off the decorating. Things that used to take a week to get are now taking a month.

I plan to go home tomorrow afternoon so I can rest up before having the girls Tuesday and Wednesday. They are leaving soon so we want Patrick to be able to spend a summer much time with them as he can since he will be back at the cabin Thursday for two weeks. I’ll be home enjoying them and keeping them at my house until Meghan flies back to get them. 

5/26/2020

I amazed myself this weekend as I stacked wood without pain!  The last time I stacked a bunch of wood was six years ago and I was so out of breath.  Turns out I had leukemia but hadn't been diagnosed.  To do this six years after was an amazing feeling!  Not only that, but the day I stacked the wood, a FB memory popped up of me five years ago in the hospital receiving platelets, red blood cells, antibiotics, and fluids.  What an incredible feeling to know I am ALIVE and doing normal things!  I am greatly encouraged.  Sure, I was incredibly tired later, but gosh darn it, by the grace of God I DID IT!

Our nephew Matt arrives Thursday and then he and Patrick will be at the cabin for two solid weeks working.  I am praying diligently that they are able to get all that needs to be done completed in those two weeks.  We have another neighbor down there who offered to loan Patrick his backhoe and we are so very grateful.

I received some letters from Casey and I'm so glad he is doing well in his treatment center.  Today it has been three weeks since he has been there.  God is so good.

5/27/2020

Extreme fatigue has been hitting me hard lately.  The girls spent the night and Patrick had so much to do. Unfortunately, I was about as helpful as a wet noodle as I could hardly put one foot in front of the other.  I went to bed by 9 leaving him to get the little ones asleep.  I suspect low cortisol and overdoing it at the cabin this weekend has intensified my fatigue. I have the girls all day today and I pray I have the energy to make the day fun. I do not want to be the "lame" grandmother who can't do anything.  Their other grandmothers have lots of energy and they are full of fun.  And they are both slightly older than me!  I don't want to be the "dreaded grammie" they have to tolerate. I guess I am feeling a bit insecure right now.

I went through the girl's closet last night as I had stored a whole bunch of clothes in there.  Clothes I hadn't looked at in four years.  They were my probation officer shirts, vests, and pants. I decided to take the cargo pants to the cabin because they will probably be useful. I am keeping some of the vests, but also going to give a bunch away along with some very nice DOC shirts that we PO's wore. No need for those anymore. :(

I hope the sun shines today. Perhaps if it's warm and we hang out outside I will get more energy and stamina. If it's nice, I told Granny I would bring the girls over to visit her, and we can be outside so she isn't exposed to germs. My first planned stop of the day is to Hyer Ground Espresso and then Midvalley Garden and Greenhouse. It is double-punch day at the coffee shop and I promised the girls a hot chocolate and me a latte.  I also want to look at trees again.  I wish I had the money to do all I need to do at the RV Park, but at least I can plan for next year.

5/27/20

The best plans don't always work out. Meghan forgot she made plans with her sister-in-law, so she asked me to bring the girls home by noon. I was still going to go get us drinks at the coffee shop, but Ailynn and I had a disagreement, and there were tears from both of us and hrut feelings. We didn't get those drinks.  On the way to her house, we talked about what happened. She shared with me that she doesn't know why she gets angry every day. When I asked her how I can help her through it, her little voice cried in anguish, "I don't know how you can help me." My heart simply broke. I find it amazing that at four, she can identify and articulate the problem, as well as admit she doesn't know the solution. I told her I am willing to ask a class to learn how to help her.

They came back tonight to see Patrick one last time but Boe isn't spending the night as she doesn't feel well. I had another day of overwhelming exhaustion and I fell asleep outside. I feel so discouraged. I read a post on my bone marrow support page and a lady shared her family doesn't understand what she's going through and basically told her she should be feeling and acting normal. I feel an overwhelming amount of sadness for the families who don't support one another. I also feel grateful that I have a husband and wonderful family and friends who do allow me to share my frustrations, sickness, pain, and sadness without judgment. 

I feel sad that Meg and Kirk are driving out on Sunday. I'm happy to have the girls an extra week, but they will be leaving. I'm sad that I won't have any children or grandchildren in Alaska.

 5/30/2020

Yesterday I visited with Granny.  It was such a beautiful day and we sat outside while she enjoyed the homemade chicken noodle soup I brought over.  I convinced her to go with me to MidValley Greenhouse so she could see Mark and family.  Her caregiver, Liz, and I took her and pushed her around in the wheelchair.  I know she was tired, but I think it was important to get her out and about.  She stays home so much which of course is important due to coronavirus, but it's also important to be stimulated.  After we left the greenhouse I took her to my friend Misty's place to buy some tulips.  I put them in a vase and left them for Granny to enjoy.  I'll see her again today as I will take her breakfast to her and give her her medicine.  She is a joy and I love her.

It's a sad, sad world we live in.  The latest senseless killing of a black man by police officers has stormed our nation.  While I agree that what happened is inexcusable and horrendous, I do not agree with the looting and the violence that is taking place.  I don't understand how anyone thinks it is okay to match violence for violence.  There is limited peace in this world and people are quick to react negatively and violently as a solution for injustice.  There are far better ways to get a point across than resorting to more violence. I fear for our nation.  We are so divided and the huge chasm is creating disharmony across our nation.  We need the peace of God to pour down like rain and flood our nation.

Meghan and Kirk decided due to all the COVID fiascos, they will be taking the girls with them on the drive through Canada after all. I am devastated and so sad. They leave tomorrow.

5/31/2020

Severe stomach pain woke me up about 0330 today and I haven’t gone back to sleep. I did overeat last night and hope that’s all it is and not the GVHD. I’m absolutely miserable that my daughter, son-in-law, and granddaughters are leaving Alaska today. I will have no children or grandchildren in this state and I don’t know how I will bear it. It is not like I can just jump on a plane and go visit. I am trying to get out of my June visit to Mayo. I’m too scared to fly with the continued increase in COVID diagnoses. Life feels really hard right now.

 

June

6/2/2020

The day Meghan, Kirk, and the girls left was very hard on me.  Ailynn had the hardest time of the three little ones.  She spent the night with her Grandma Jane and Jane said the first thing she said on Sunday morning was, "I don't want to leave Alaska."  I attempted to make it sound exciting for them as they were departing for the great adventure seeing bears, buffalo, and wild animals in Canada.  However, my efforts probably fell flat since there were tears streaming down my face as I assured them how much fun they were going to have.  They have crossed the border and are on day two in Canada.  How my heart hurts.  I keep running across their clothes, toys, and books and my heart gets a ping each time.

Yesterday, my blood sugar was 600!  I gave myself over 80 units yesterday.  Just before bed, I discovered my insulin pump had become disconnected from my insulin port. I have no idea how long that had been like that but it could explain why it took so long to come down.  I am sure it wasn't that way all day.  My feet were tingling pretty bad yesterday with the neuropathy. Dang, it!  I must be more careful.

I am starting the dreaded process of painting my bathroom.  This is something I have wanted to be done for the past four years and have been coming up with all sorts of excuses as to why I shouldn't begin the job.  I have the taping 75% completed.  My plan is to finish that, go on a walk with my friend Lisa W. who is up visiting, take our cat to the Vet, then paint.  It's on my to-do list so I must get it done.  Crossing off the chores on the list gives me a sense of satisfaction.  Sometimes when I do extra things that are not on the list, I add them and cross them off. No one sees the list but for me,  but the good feeling it gives me is worth it, haha.  I'm not even telling Patrick I am painting the bathroom so he will be surprised when he comes home in a couple of weeks.  He is working very hard on our business in Kasilof.  The poor guy must be exhausted.

Tomorrow I am walking with my friend Lisa S. who is moving back to Wisconsin.  So many people are leaving Alaska and it makes me sad.  Thank goodness for cell phones.

6/4/2020

We had to make the tough decision about euthanizing our cat, Oreo, on Tuesday. About six weeks ago, we noticed that her appetite had diminished.  Normally, she would beg for canned cat food all day long.  She ate two cans of cat food each day, plus we had a bowl of dry cat food out for her that she would eat.  Several weeks ago that stopped.  She was still drinking water.  I took her to the Vet about three weeks ago and they did blood tests. Everything was fine but her liver functions were slightly elevated but they couldn't explain why that would cause the weight loss or loss of interest in eating.  I tried force-feeding her a couple of times which wasn't enjoyable for her (or me) and I"m sure stressed her.  In my heart, I knew what I had to do, but it's Patrick's cat and he's working at the RV Park.  I conferenced him in the call with the Vet (my friend Susan) and we made the decision together.  I got to cuddle with her for several minutes before we began.  Oreo died peacefully and calmly in my arms.  It was a hard day.  Yesterday I kept looking around for her, forgetting for a bit that she wasn't coming back.  Memories are everywhere and my goal is to put all her things away before Patrick comes home. I don't want him to see her things and feel that jabbing pain.  I replaced her food area (which is on top of a foosball table covered in a plastic piece) with pictures of the grandchildren.  Now that might now work because they are now out of state and he's feeling sad about that too!  I am doing my best to make him feel better.

Patrick is also very stressed about the RV Park. Lots of things have been complicated and he is tired and weary.  I feel so bad that I am here and not helping.  I have lots of jobs here to do and I cannot believe how busy I am.  Matt (our nephew) is here for a month to help which is truly a Godsend for Patrick. Please pray things go smoothly and we can do this efficiently and won't incur anymore substantial costs.  We had no idea how expensive this would be.

Painting the bathroom was a fiasco.  I fell trying to get on the vanity to reach the upper walls.  I stepped in the paint tray, the original "new and awesome paint roller" didn't work out so I had to go to Lowes and get a different one.  I got paint on the ceiling and now must cover that up plus touch up some other paint on the walls. I broke the shower caddy trying to clean it. I got paint on my bathroom rugs. Do not ever consider hiring me for a paint job.

This morning I have a dental cleaning and then will be helping at the Garden of Reflection.  I also have more clothes to drop off to True North Recovery and Valley Oaks.  These are the clothes I collected from the community for the Capstone Event I was organizing.  Due to COVID, we don't know when we can hold the event so I'm going ahead and dispersing the clothes as I cannot keep storing them. 

God is good and in control.  We must remember that. apologize if I have confused anyone about separating the months partway through. When I update on my phone or I-Pad, it makes it more challenging to write.

My doctor's office called me yesterday and gave me the news that I wasn't expecting. I believed the whole pituitary gland failure was an inaccurate diagnosis- a lab error of sorts. Lately, due to extreme exhaustion (even more than usual), he decided to test it again. I was working at the Garden of Reflection (volunteering) when his office called and told me the doctor is increasing my hydrocortisone because my levels are worse. I was stunned as I believed God would heal me or the lab had made a mistake. I felt frustrated and disappointed. I decided to prove I can still do anything, so I came home and put 18 bags of mulch in Logan's memorial garden. I then collapsed on the couch and slept a couple of hours. Then I was up until midnight, and now I am up and it's 0400. Welcome to my nightmare night after night. 😫

I am meeting my friend Lisa S. for a walk this morning as ours didn't work out the other day. Then I am meeting my friend Wendy for lunch at one of the local food trucks. I'm finally going to get to try the pickle sandwich my friend Amanda sells out of her business, " The Wandering Cafe." I also have some business stuff to do and paint still to touch up. If I'm wise, I would take an earlier nap to increase my chances of sleeping better at night.

I had a great conversation with Casey yesterday. I am so glad he called. He is struggling with the heat in Texas as are my parents. He sounds good and has a good attitude.

6/6/2020

I visited with Granny today. This morning's breakfast was a waffle, egg, and sausage patty.  As usual, she told me it was too much food, but per usual, she ate most of it.  We then sat outside and enjoyed the sun for a bit.  Yesterday I had a nice walk with Lisa and Ringo. I sure will miss Lisa.  She had a bone marrow transplant over 20 years ago, also for AML.  She's doing great and it gives me great hope.  I have been up since 0320 this morning and I hope to get a nap in today.  Those aren't working out great for me as I have trouble sleeping until the evening, then I am up late, then I wake up early. Dang it, I wish I could figure this out.

6/8/2020

Granny did not feel well yesterday.  She had a bad headache and didn't get out of bed until 10 AM.  Aunt Connie brought her some Tylenol and checked her temperature.  She felt better after the Tylenol.  I left and went grocery shopping and stopped at McDonald's to get her a burger and fries.  Granny LOVES fast food.  It is funny, but she never says, "I can't eat all of this food when we put fast food in front of her!"  I'll call her and check on her today and make sure she is doing okay.  She has a caregiver Monday- Friday so I know she is in good hands.

I was going to go on a walk today with my friend Lisa, but it's raining outside.  I am too much of a wimp to walk in the rain, so I will wait until it clears up a bit and just walk in the neighborhood again.  

Casey called last night and he sounded so good!  I have been getting regular letters from him too.  What a joy to speak to him when he is clear-minded.  He is happy, positive, joyful, encouraged, and at peace.  He is working on his issues and has a wonderful attitude.  I feel such JOY when I talk to "sober Casey." I enjoy him so much as he's respectful, funny, kind, compassionate, and loving.  Praise God! I feel like I have my son back, how he was meant to be.  There is still a long road ahead and I ask for continued prayers for him, but I also give God so many thanks for this moment in time.

6/11/2020

We are celebrating the day of Patrick’s birth today! I am so thankful for this great man I get to call my husband. He’s a good man, faithful, loving, smart, and capable. He has stood by me in the worst of times and never wavered in his support for me. He’s been my encourager, my rock, and my strength. I wish I could tell him to take the whole day off to fish, but alas, I must keep cracking the whip and have him work on the RV Park. But, I will insist he fish tonight.

Ringo and I got to the cabin yesterday. Today I have several chores to do and hopefully will get another walk in as well. Before I drove down, I had an oncology appointment that went pretty well. Dr. Klix is still concerned about my lack of blood glucose control and my pituitary gland/adrenal gland problem. She is also concerned about my plan to return to the workplace this fall because of my compromised immune system. I can’t stop living. I understand it is risky, especially now with COVID. But God has placed this burden on my heart so I will trust him for the timing.

 

6/13/2020

It is 0400 and I have been awake for an hour. I sent Patrick to the loft at 0399 because of his snoring. I doubt I will go back to sleep per usual experience. I’m so tired during the day but can no longer fall asleep until about 7 PM, which further exacerbates my sleeping problem. 

Patrick and Matt are working hard on the RV Park and it’s looking really good! My main job is to make sure they eat regularly and have enough water. I can handle that! I want to support them the best I can. I am also keeping up on my walks as I know it’s good for my physical and mental health both.

 6/16/2020

Yesterday my parents celebrated their 57th wedding anniversary.  57 years with the same person is incredibly wonderful.   So many of my friends have not made it past 20 without getting divorced. I have several friends who have been divorced more than once.  I will not presume to know what they went through, but I will say I know marriage takes a lot of work and it seems many aren't willing to do the work to make the marriage thrive.  My parents have certainly gone through some bad crap, but they love each other and were not willing to let go of their relationship.  They motivate me to continue loving my husband and to work on issues that we have. We all have issues and each of us changes.  It's learning to love the newer version in the older body that is essential.

I worked very hard on Friday, Saturday, and Sunday hauling tree branches and even cutting down some branches with a small chain saw.  I overdid it and yesterday was unable to do much due to extreme fatigue.  I do plan to resume my duties today- I don't want to be a slacker!  Patrick had to go back to work yesterday so that gave me an excuse to take the day off since the "boss" was out of town.  Our nephew Matt was still working hard, bless his heart!  Tomorrow we are getting our "Meghan's Mighty Moose" cabin delivered.  I am hoping they will also move "Casey's Bear Den" back where it is supposed to go.  Patrick had to move it 50 feet so he and Matt could spread the pit run that was dropped off.  They had to raise it 18 inches due to drainage.  I'll tell you what pit run and D-! aren't cheap!  This whole RV Park is costing FAR more than we anticipated. I sure pray we are able to get it up and running to make some money to help pay the bills.  I start to panic then I remind myself that God is in control and he paved the way for us to do this so it IS from him. I hope to be a blessing to our guests.

I tore my insulin pump site right out this morning as the tubing got wrapped around a doorknob.  I am constantly wrapping it around doors, seatbelts, etc. Usually, I am able to quickly stop and untangle before it rips it out. It sure hurts when I get it caught!  My blood sugars are doing better.  Although I am still having some highs, they aren't as high as they were which is good.  I have my first Telehealth with an allergist tomorrow.  We shall see what tests he wants to run. The new ENT I saw (Telehealth) thinks that might be the cause of all my sinus problems.  Who knows!

It is going to be another beautiful day. I am thankful for the gorgeous sunshine God has provided.  I hope you all have a great day.  Please pray for little Beemer and Hudson- two Alaskan boys who are very sick.  Beemer had a bone marrow transplant and is having all sorts of complications.  Hudson was recently diagnosed with Aplastic Anemia and needs a bone marrow transplant

 

6/18/20

I have “ Granny duty” tonight and tomorrow. It’s almost midnight and the possibility of sleeping isn’t looking good. She’s restless and in pain. I’ve had to help her to the bathroom once, I have had to go in there several times due to her trying to get out of bed. I am terrified she will fall. I don’t have CNA experience. I feel so inadequate. 

I drove home from the cabin today. I worked really hard down there and there is still so much to do.  We need some prayers because we have some roadblocks and until they are moved, we cannot open. We have a lot of money going out and not much coming in!

I have a friend getting divorced, another friend with a huge problem, a cousin dying of cancer, and a young lady pregnant again after losing many babies. My heart is heavy.

It was a LONG night!!!! I didn't get any sleep until after 0300 and that was minimal. I gave up trying about 0600. I ended up just crawling in her bed. She was having bad dreams and kept yelling for help thinking it was snowing and we needed to call 911. When she got up about 6:30, she was as clearheaded and sharp as could be.  She remembered everything about family members, asked me all sorts of questions, commented on everyone's careers, asked about my mom's physical therapy and Oliveienne's schooling, spilled a family secret to me (which will not leave my mouth) and was telling me she wants to go visit our cabin!  She was lying in bed planning things to make for the cabins.  She was cracking me up but I sure am tired!

 I am scheduled to spend the night there again but Holly and I may trade nights and I will do tomorrow instead. I'll wait and see what she wants to see. I do have Sunday night scheduled too. My back hurts from the strain of holding her up and maneuvering her.  I feel so inept at CNA's work!  We had to walk to the bathroom three times in the middle of the night on top of it. I tell you what, it was difficult!

6/21/2020

I had a lovely afternoon.  A family friend, Karen, offered to stay with Granny from 1 PM to 5 PM so Aunt Connie and I could both have some time at home. I walked Ringo and watered my flowers. I hope Aunt Connie got a nap because she is doing SO much for Granny.  She has decided she alone will be doing the overnights.  I don't know how she has the energy to keep going.  I will do tomorrow evening and then Tuesday and Wednesday mornings until the caregiver arrives. I am going back to the cabin on Thursday so I will no longer be able to take a shift and I feel bad about that.  We have to find a professional to help.

Happy Father's Day to my dad, my husband. my father-in-law, and our son-in-law.  All men are great men and awesome fathers.  Patrick is thankfully taking the day off and going fishing.  He's still at the cabin and he sure needs the break.  Casey took the day off work to hang out with my dad which is special.  I have no idea what Kirk and Meghan are doing.  Hopefully, my FIL, Bob, is riding his Harley.  I am not a lover of holidays, but I do celebrate birthdays, Mother's Day, and Father's Day with a happy heart. 

I am thankful the past two nights have been easier for me to sleep.  I have gotten some much needed quality sleep and I am so happy about that.  It doesn't seem to make me less fatigued during the day, but I know it will make a difference in what I can do.   I recently read a synopsis of a 35-year-old woman who has severe graft vs. host disease.  When I read all she is going through, I was more than thankful and a bit repentant for complaining about my seemingly minor problems compared to what she has gone through after her bone marrow transplant.  Sometimes it takes something like hearing someone else's story to remember how much we need to be grateful and thankful for our own story.

I had two short shifts at Granny's today because my poor Aunt Connie won't take much time off to rest. I feel horrible that she is so exhausted doing each night at Granny's. I will relieve her at 0700 tomorrow and stay until the caregiver (an angel sent from God) comes at 10.  Liz has worked for Granny for a few months now and is awesome.  We wish she could do 24/7 care but alas, she must have a life too!!!  We are thankful we have her Monday- Friday.  Now we must find someone willing and able to do weekend days so Aunt Connie can have rest. I leave for the cabin again on Thursday and won't be able to help out most of the month.  We can't get anyone in the family to take a shift except for the three of us who always help.  I know my parents wish they were here to help.

6/23/2020

Granny wasn't feeling well today at all.  She got out of bed at 0900 and promptly fell back to sleep while sitting in her recliner.  She said she wasn't in pain- just didn't feel well. Liz (her caregiver) said she ate a good lunch which is good.

Tomorrow is Logan's birthday.  He would have been 33 which is hard to even imagine as I still think of him as that 11-year-old freckled-face adorable child.  I miss him so much but I celebrate the 11 years we had with him.

I am completely stressed and feeling out of sorts today.  I am frustrated, angry, and sometimes unsure of what God has planned.  Life isn't easy when addiction is present and I have many different emotions, worries, concerns, doubts, and fears.  My days are typically filled with anxiety and worry about what might happen.  When I don't hear any news, my mind wanders to a dark place.  I am fed up with people telling me to pray and let God do the work.  I feel as if this is my life for the next however many years I am alive.  I will always worry and I will always stress when I do not know how things are really going.

6/24/2020

Birthdays are my favorite days to celebrate. I like birthdays because we have an opportunity to celebrate the person who was born on this day. It’s a unique day for each person. Birthdays give us a chance to honor the special person and make them feel important and valued. Today is Logan Joseph Marre’s birthday. Logan lived for exactly 11 years and 4 months on earth. Logan deserves to be honored and remembered today because he lived and made a difference in the lives of so many. He was an old soul in a child’s body. He taught me how to be a mom, how to cherish special moments and people, how to be compassionate, how to analyze things (he was super smart), how to love unconditionally, how to have fun, and so much more. He truly cared about people. He loved babies so much, and at his young age fought to bring attention to the importance of life for each unborn child. He grieved deeply when someone he knew passed away. He was braver than I have ever been, as he battled through a tough fight with leukemia without complaint. He used humor to get through it all. He adored his brother and sister and was like a parent to them at times! He loved spending time with his grandparents and thought the world of them. He adored his Granny’s freshly baked bread- that was the only time he was selfish and didn’t want to share!🤣 He loved fishing with his father and they shared so many interests. He was a great athlete and played baseball, basketball, soccer, and practiced martial arts. He was a devoted friend and looked at his cousin Michelle and his friends Delanie, Patrick, Brendan, Josh, Caitlin, and Kekoa (and many others) as siblings. He loved his aunt and uncle and spent a lot of time fishing in their creek. Truly, there was no one he didn’t like- except one doctor who treated him like a “child,” but he got even by giving him a sour warhead. Oh, how he laughed!
I can’t say enough about how wonderful he was. I doubt they celebrate earthly birthdays in Heaven because being in Heaven beats it all. But, I do think God lets Logan glimpse down at us and see how we remember him. Today is a day to celebrate because Logan lived and his story will forever live on.

 

6/28/2020

What is it like to be married to the same man for 34 years? It’s wonderful, comforting, beautiful, and satisfying. I love my husband even more than I did 34 years ago when we stood before God, friends and family and pledged to love one another forever. Our marriage hasn’t been a smooth ride I will say, but through all the hills and valleys, we never lost our love or passion for one another. Patrick always said he loved my high spirited personality, but I don’t think he realized how much spirit I truly have. I wonder if he thought I would mellow out over the years. After 34 years of marriage he’s probably figured out I’ll never be a calm and quiet person.

We have suffered great pain and loss over the years and there have been times when things seemed impossible to come out on top. However, we have managed to overcome so much pain sorrow, and obstacles by the grace of God. We love each other and believe we are soulmates. Patrick has been my rock and he holds me up when I am too weak to stand on my own. I love him so much and I am so very thankful to share my life with him.

6/30/20

Its the last day of June. The summer is flying by and we aren’t ready to open our RV Park due to multiple  delays. My anxiety is high. It’s almost 0300 and I’ve been awake for 1.5 hours. I have a Telehealth with Mayo at 0445 of all times! I didn’t realize they scheduled it at 0745 their time. Since I cannot sleep, I may as well just stay up for the appointment. This sleeping disorder the steroids have caused is absolutely miserable. Mosr times I can’t even nap during the day. I’m so sleep deprived. There is so much on my mind and I can’t stop thinking about those I care about who are going through so much grief, pain, stress, and trauma. I’m worried about our world and feel it’s only going to get worse.  I worry about the lack of love for Jesus, the lack of empathy for others, and the lost souls. I know I am not supposed to worry but am supposed to trust God. I need the peace of God right now. At least I am at the cabin and am isolated for the most part. But I do miss people too. Help us all, please Lord.