Happy December, everyone! Again, while I don't want to wish my life away, being close to 2020 means graduation is just ahead of the corner, and I am so excited. We came home from the cabin yesterday because I was having too
many problems trying to get the programs to be compatible between my MAC, PERRLA, and my PC. As it is, I continued having problems that I won't bore you with today. But let me assure you that there were many, many tears yesterday. I went to upload
my very last assignment only to find my professor never opened the link. So now I don't know what to do. They don't typically accept papers through email. I'm leaving tonight for Mayo Clinic and cannot guarantee I am going to have a chance to upload the document
from down there. I hadn't even planned on taking my computer as its just one more thing I have to worry about. I really hoped this was it for the semester but it seems never to end.
I broke down and took Ativan last night and did manage to get 4 hours
of sleep, which was genuinely delightful. I went to the 0900 church service this morning and came home and wrapped Christmas presents. I am so fatigued. No possibility of a nap, though, because I need to be at Granny's a bit early for her birthday party.
Holly went over and did a day of pampering for her, which is super sweet. She gave her a pedicure and curled her hair. I plan to do more of that for Granny during my school break.
We finally have snow! It sure is beautiful, although I was
saying yesterday that I didn't miss it at all.
There has been a lot going on since Sunday! Granny's birthday party was a success. She felt loved and pampered. Holly went over earlier in the day and gave her
a pedicure and manicure as well as curling her hair. Granny enjoyed the spa treatment for sure. I am going to make a point of doing that once a month, at least. I started to say once a week, but I tend to overbook myself and stress out, so
a monthly goal will be much more reasonable. I enjoyed visiting with my extended family. Since I skipped out on the Thanksgiving get together, it had been a while since I had visited with them. I had some enjoyable conversations with my younger
cousins. They are all such sweet and different human beings, and I adore them all.
Things went exceptionally well with my travels. I flew through TSA security without a hitch, my bags all stayed with me (or my plane), and there were no significant
delays. I sat next to a lovely young lady from Anchorage to Portland, who is working on her bachelor of criminal justice. We had some exciting discussions about addiction. She shared that her older sister has struggled with meth addiction and how
it has affected familial relationships, especially because her parents are raising one of the sister's children. We both admitted we don't know the answer, but we do believe people should stop being so judgmental and more interested in helping others.
I got to Rochester just fine. I should add that I SLEPT ON THE PLANE! I took Dramamine and got more sleep on the plane than I had in weeks! I was still exhausted yesterday afternoon and more than a little depressed at being here alone.
I laid down for hours but couldn't sleep. Finally, about 7:30 PM, I made myself go get some dinner. I hadn't eaten since an early breakfast sandwich in Portland. It dawned on me that my beloved Red Lobster restaurant was close by, and since Mom
was coming in tonight, I should eat there since seafood is off her diet due to Gout issues. I told the waitress I hadn't eaten since early morning, but I wasn't really hungry. I ordered two types of shrimp, mashed potatoes, and a Cesar salad. It
came with their famous biscuits, of course! I ate ALL of the food!! I did only eat one biscuit, but that was a lot of food!
I came back to the hotel, worked on my paper again because of the formatting issues, and then picked Mom up. We finally
went to sleep about 0100, and I have been awake since 0230 with intermittent awakenings before that time. God gave me an idea in my sleep, so at 0230, I was eager to try it. I figured out all my technical difficulties with my paper, and I JUST
SUBMITTED MY FINAL ASSIGNMENT FOR THE SEMESTER!!!! I feel like jumping up and down and screaming, but instead, I am in the bathroom with the door shut, so I don't disturb Mom with my typing! I am high as a kite right now with thankfulness to God for
showing me how to do this in my sleep. What an incredible relief it is. Now I can concentrate on taking care of me and my medical concerns. I do have four classes to log into this week, but hey, I can do that!!!!! I don't sleep anyway, so what
does it matter?
I am so very, very, very, exceptionally very grateful to our loving God. He is faithful and just. Yesterday when I was feeling so depressed, two friends reached out to me to check in with me. These two aren't friends
I hang out with regularly. I have known one of them for many years, but we don't stay in constant touch. Her reaching out was incredibly meaningful to me. The other lady is a sweet lady I have known for a few years. She has also had a great medical
history and understands the emotional and physical toll on the mind and body. I am also grateful for her support. Comments left on this page (ANITA) bless me immensely. Just knowing I have people in my life who love me and care for me brings
me great hope and joy.
I had a pleasant phone conversation with Casey yesterday too. He openly shared with me, and it blessed me tremendously. I pray our relationship continues to be blessed, and he continues to do amazingly well as he seeks
God's direction in his life. Oh, God is so good. How I love him so!
I am taking the lazy way out and copy/pasting from my FB post, so I don't have to retype.
I know many are wondering how things
are going. I don’t know how to answer that right now. I saw my transplant doctor yesterday, and they are now trying harder to get me into the specialist that I knew I needed to see before who doesn’t have an appointment available. If you want a
specific thing to pray about, please pray they can get me in before I leave on Friday. I need answers. They did a skin biopsy yesterday to test for GVHD. I have scaled skin? Perhaps reptile-like? I don’t know. They put a rush on it so we should find
out by Friday. I’m having other tests later today, so I won’t be able to eat till probably 3 PM, which is no big deal except I do have Type 1 diabetes, which is always challenging to manage.
My transplant doctor dropped my Prednisone dose
in half, so I’m now on 60 mg instead of 120. That’s fantastic, but when I decreased to 80 mg last week, I started having symptoms again, so it’s good we are doing it while I am here to monitor. In the past, this has caused adrenal insufficiency,
so they need to be following me for that.
Thhey want to put me on a $6600 medicine to help protect me better from mold and fungus, but the insurance doesn’t want to pay for the drug.
My Anchorage provider told me I didn’t need to
be on penicillin anymore, and my transplant doctor wasn’t impressed, and I was immediately put back on that. I was also told by Anchorage doctor not to worry about my Pantamadine treatments- also false... Mayo has no appointments available for that breathing
treatment, so they are trying to figure out what to do there.
I’ve been awake since 0130 but did get about three hours of sleep, so I will be good today.
A biopsy was sent to Mayo in July, and they diagnosed me with GVHD in my gut. They can’t
find that report THEY did in their system. I had to call my Anchorage GI to ask them to fax the report Mayo sent them. The Anchorage fax is down, and they don’t know when it will be fixed.
My Mom and I are enjoying our time, and we’ve centered
our time around all the great restaurants here that we love. Tomorrow we will go to our favorite Vietnamese restaurant. I cannot get their chicken noodle soup out of my head!
That about sums it up! Please pray for all the appointments I need will be
available so I can come home on Friday!!! Thank you for your messages, your concern, and mostly your prayers. ❤️❤️❤️❤️🙏
Oh, my faithful friends, made a miracle happen. I just now was told they made an appointment with the GI doctor tomorrow! I
can hardly believe it, but I don’t know why I ever doubted the strength of prayers from all of you! I am thanking GOD and YOU right now! And thanks to a friend who confirmed I could get my respiratory treatment at Providence as an outpatient. I have
my doctors here contacting the doctor in AK to arrange it. Wow, this is all coming along nicely!
AND IT GETS BETTER!!!! This is Casey's post I copied. I am praising GOD for him tonight and every night. He is now an official volunteer firefighter and
is so excited and filled with purpose. God is so good and amazing.
I have an opportunity to serve my new state and community! Tonight
I officially start my journey with the volunteer fire department.
PS: The guys have already given me the nickname Spanky. It was crucial to get my nickname declared almost immediately, due to the fact the Chief's name is also Casey. So, being the new
guy in the department, I am no longer Casey Marre.... I guess I’ll have to navigate life with the name Spanky... just one more opportunity to rise above my circumstances I suppose 👌👍
I don't know why I am surprised that God answered our
prayers for my situation and for helping Casey overcome his addiction. Why am I surprised? We serve an amazing God, and people have been praying. Miracles DO HAPPEN!!!!! Thank you, Jesus!
My mom and I have been having such a wonderful time together.
I feel bad because she has to wait around for me 7 hours plus a day at the clinic. There have been some LONG days!!!! Yesterday was 7.5 and the day before was 9 hours. Tomorrow it will be at least 6. We are exhausted. Our highlight has been shopping
and eating lol. We have a favorite restaurant in Rochester- PHO CHAU. At least it's mine, and I come every time I am in town. Last night we had an enormous bowl of chicken noodle soup and egg rolls. Tonight we are going back, and I'm having the
shrimp lo-main. I also went to Red Lobster before Mom got here and got my shrimp and biscuit I love so much. It's all about the food here, which is hilarious because I don't usually get so excited about food! I also bought my usual sugar-free
malt balls. Rochester Apache Mall is the only place I can ever find them, so I only get them when I am at Mayo. We did our usual Dollar Tree shopping when I load up on cards. I pick Granny up some too, so I ended up with 73 cards this time!
I may have overdone it?? In the end, it does save money. The poor cashier wasn't impressed, though....
I am finished with all my many appointments this week. Today was a 9 hour day, yesterday a 7.5 hour day, and I believe Tuesday was an 8 hour day. Lots of tests, lots of doctors, lots
of sitting. The conclusion? Unknown. There does not appear to be any active GVHD at this point, but biopsy results aren’t back. The high dose Prednisone can mask that, but hard to say. No skin GVHD for sure. It could be related to the Rotavirus I had
in May or the other virus I had in October. It could be a problem with my nerve endings in my bile duct area. In July, I had a stent placed into my elongated bile duct as well as my pancreas, and I developed pancreatitis. They were thorough here at Mayo.
The plan is to follow up with some testing for my neuropathy, get my breathing treatment, hopefully, get approved for the new medicine the insurance is balking at approving to protect me against mold and fungus, and have my local hematologist/oncologist monitor
me as they taper me off the steroids to ensure I don’t experience adrenal insufficiency again. As my friend Lisa reminded me, I am under five years old, and the first five years post-transplant is supposed to be the most difficult. She also said I might
just be a little weird! 🤣🤣 She’s 22 years out and still has some complications. It may be I have to accept that things just aren’t always going to be right, but that doesn’t mean I can’t have a fulfilling and enjoyable life.
I refuse to let this limit me. I think most realize nothing has stopped me yet. I am determined, I am strong, and I can do this!
put Mom on a plane in Rochester, and I am waiting for my plane in Minneapolis. I am more than ready to return home to my husband and family. We have a fun weekend planned, and then next week, I leave for Texas to see my parents and Casey. God is so good.
is SO nice to be home! I was impatient the whole weekend as I wanted to be in my house, with my animals, and back to a regular routine. We had a good time in Anchorage, though, as we celebrated the Christmas season with business associates/friends.
We had a lovely dinner, and I got to get dressed up and go on a date with my dashing husband. Still, it was spectacular to walk through the doors of my house and pet my animals and do laundry! I don't need a lot in life. Give me some animals and
a washer and dryer, and I'll call it good. :)
I leave Friday morning (very early) to visit Mom, Dad, and Casey in Texas.
I had that trip planned before the Mayo Clinic trip happened. I look forward to visiting them and hopefully some warmer weather. Tomorrow night I will get to see the grandbabies, which is always a bonus.
Meg, Kirk, and the girls came over last night for
dinner. I was drained but so thankful to be with them. We ended up keeping Ailynn and Boe the previous night. Ollie has school so she couldn’t stay. I think she was looking forward to being the center of attention at home, though. She and I made some
candy I guess you would call it. It’s a peppermint bark made with white chocolate chips and cookies crumbled up. It turned out pretty good. The other girls weren’t interested in helping. Boe started too but quickly got bored. Ailynn was in one
of her moods, and she wasn’t happy with anything. I’ve been awake since 0110, but feel confident we will have a fun morning together. I want to see Granny, but Meghan said she has a doctor's appointment this morning, so I will need to check
when she’s available.
It feels so strange to have few commitments over the next month. I’m not sure what
I am going to do with myself! I’m not used to having time to relax. Thursday night, we are hosting a dinner party for my fellow bone marrow transplant survivors and their caregivers. I am very excited about that! It will be helpful to get together with
people who understand what it is like.
lack of sleep hits me quickly and painfully at times. I refer to it as hitting the wall. I was visiting with a friend at my Granny’s house last night when I swear my eyes were rolling in the back of my head. I knew I wasn’t going to make it home
unless I slept. I told Granny I needed to take a nap and stretched out on the couch. She asked, “Do you need a blankie?” I said, No, thank you. I just need to sleep.” A few minutes later she asked, “Do you want something to drink?”
I responded, “No thank you, I just need to sleep.” Yet a few minutes later, “Are you hungry?” “No thank you, Granny. I really need to sleep for a bit.” A few minutes later..... there was my 92-year-old Granny covering me
with a blanket. PRICELESS!!! How blessed am I?
Last night I decided to attempt to trick my body/mind and stayed up until
0100, which is usually when I wake up for the day. I went to sleep and woke up at 0200!!! Thankfully, I was able to go back to sleep, which was surprising and slept until about 0430, so I did get about 3.5 hours of sleep. That should get me through the day.
I have an orthopedic appointment this morning for my shoulder and am then driving to Anchorage for my Pantamadine treatment that I should have gotten two weeks ago. It was such a mess trying to get this figured out in Alaska. First, my local oncologist
office said they never received the order from Mayo. I was able to send it myself to them. Then it was the weekend, and then they sent the request to the wrong department. Finally, after numerous attempts, Providence efficiently got it scheduled.
I also got a call from my nurse coordinator at Mayo, and the biopsy does indeed still show the mild GVHD in my colon. So, as I taper off the steroids, I might have a reoccurrence of the severe stomach pain. Hopefully not. Hopefully, the pain was attributed
to the campylobacter virus I had at the same time.
I arrived in Texas on Friday the 13th. I am not superstitious at all but must admit having a chuckle at the things that happened during the trip. First, AK Air was having trouble scanning my baggage
in, and I was concerned that it would not show up in Austin. Then, I did not get precheck, which means I was searched and thoroughly prodded throughout my bodily cavities- or ar least it seemed like that! I landed in Seattle and went to the gate my boarding
pass on my phone said. Finally, I realized the Gate was changed, so got that fixed. Then, I flew to Portland and was so excited that I got upgraded to first class. I mean, super excited! But then they announced the plane had mechanical problems and they were
switching to a smaller plane. I went from seat four to seat 17! But, it was an exit row, and now there was tons of room in it and no one in the middle seat so I can’t complain. I had taken three Dramamine between all the flights and had a glass of wine
on the plane. When I got there, my sweet dad was there to pick me up. I promptly fell asleep and slept the 1.5-hour trip home. I then proceeded to sleep all night for the first time in six weeks. I wish I could say I slept well since then, but that’s
not the case.
It was almost 80 here yesterday and so beautiful. It’s just going to be about 50 the remainder of
my stay, but that's okay! I’ve taken a walk each day- my first exercise since getting out of the hospital in November! I’ve got to get back into rebuilding my strength. I have no muscle left. I only have two full days left to visit, and I want
to make them special. I’m so glad to be here with my parents and also to see Casey. I got 3 hours of sleep last night, so I am doing better than Saturday night. Maybe I can sleep for another hour as it’s just 0530.
I slept last night! I slept well, and I’m
so excited. Today is my last full day in Texas. It’s windy as heck and about 40 degrees. I’m debating about walking outside right now. I’m such a wimp. It sure supposed to be single digits when I get home, so I should suck it up.
Casey and I went to the YMCA last night, and I managed ten minutes on the elliptical. I found it very challenging, and I truly
had to push myself. I then walked a few laps around the track. After that, he took me to see some Christmas lights around Burnet. It was so beautiful. It was nice to spend some good quality time with Casey.
Mom and I did some shopping at an indoor flea market yesterday. The place is so huge, it’s exhausting. I had to come home and take a nap to recover from shopping!
I got 145/150 on my 33-page program evaluation paper. I’m content with that, and I am now assured of an A in the class that I worried the
most about. As Dad’s pointed out, I only have four classes left for my Master’s degree! That sounds even more doable than one semester. God is great!
I am at home!! Trips are always nice, but it's also nice to be
home in comfortable surroundings and with my animals. I landed just before 0100 this morning. I had three connections- Austin-San Diego, then to Portland, then to Anchorage. I slept a lot on the plane, which was great. Dramamine sure works well for me,
and maybe I should take it when I can't sleep. I did that one night and got a solid three hours of sleep. Casey took me to the airport yesterday, and we had a good time together. We have had a couple of excellent talks while I was in Texas.
He's figuring things out, and I reminded him, and myself, that recovery is a lifelong process, and we can't expect miracles overnight. Right now, he's doing well, and he is most certainly thinking things over and can see his shortcomings and recognize
the importance of making changes. I really enjoyed being with him.
My parents are as wonderful as always, and I am grateful for the opportunity to spend time with them. I feel horrible
for my dad as his hearing aids don't work most of the time, and he gets left out of so many conversations. I practically have to yell in his face for him to hear me. I know that's got to be so frustrating for him. He sure enjoys the wild animals that
lurk his property. They give him great joy. He has an enormous bag of cat food and deer food and feeds them all each day. Whatever makes him happy!
am meeting with a lady today who lost her adult son to an illness a month ago. Grief is so personal and raw and painful. I hope to be of some comfort to her by simply showing her love and compassion as well as an understanding of the feelings a mother
has when she has lost a child to death. We are in the "club" no one wants to be in.
I spoke with another lady today
via FB, and she shared that a few years post-transplant, she relapsed. I hear more and more stories like that, and it's scary. Dang diseases are vicious and aggressive. Later I heard someone relapsed after 18 years!
meeting with the grieving mom had to be rearranged due to her schedule. It made me think about starting another support group- this one specifically for grieving moms. We could do coffee here once a month just to check in with each other. On top
of the bone marrow support group, I want to start and school, that may be too much for me. I have had two weeks off school, and I'm already filling it up! I must stop! What I ended up doing was taking a nice long nap. I was still sleeping
when Patrick got home, and his dinner was about 2 hours later than usual. I don't think he was impressed. I spent the evening trying to stay awake. I went to bed at 11 and was up at 0400. I guess my sleeping is going back to normal, and I am so thankful.
This year there is a lot of news about people protesting about parents sharing that Santa is "real." There is a preacher
at the North Pole standing outside Santa Claus Land telling children that Santa isn't real, but Jesus is. Now that is true. There is no doubt that it is true. However, I don't see the harm in a little Christmas magic as long as the children know that Jesus
IS the reason for the season! I think what this preacher and others who have left flyers in toys in our local Walmart are doing is turning people AWAY from Jesus! It's not the correct way to go about this at all, and I think they are further dividing
Christians and non-Christians. Our country is a MESS! Our president is facing charges of impeachment; people are battling over LGBTQ issues, race, equality, etc. It feels like we are building up to the War Between the States where brother
will be against brother and father against son. I am worried about what is to come.
It is 0400, and I am awake and unable to sleep any longer, yet my body and mind are so incredibly tired. The fatigue is ferocious and worrisome. I feel as if I've barely been functioning since I got
home from Texas. My cough is getting worse, but I don't feel sick. I see Dr. Klix on Monday. I have gained four pounds because I have an insatiable appetite from the steroids. I must learn to control that.
We kept Ollie and Boe las night. When Patrick went to pick them up from their Grandma Jane, Ailynn refused to come. Later, she changed her mind, and he drove back to get her, only to learn she was
sent to bed. She is a handful of emotions, for sure. The other two were enjoyable, and it is nice to have them here again.
is a lady named Josie, who is 24 and terminal from AML. Please pray for her. She sounds so scared, and she has a little girl. I must always remember how blessed I truly am.
Today is my oldest niece's birthday. Michelle is 29 years old today. She is one of the biggest loves of my life. I love her as if she is my own daughter. We have always had a special bond.
She is an amazingly gifted artist, a nurse, and an incredible person. She visits me when I am in the hospital, and she was one of my caregivers after transplant. She survived and is thriving after a stroke last year, and nothing holds her back.
She is helping her parents set up their new coffee business by arranging most of the associated pieces of training and supply orders and designed the look of the outside of the building. There is nothing the girl can't do!
Merry Christmas to all my friends and family. Jesus is the reason for the season, and I am so thankful God sent him
to be born of a virgin so he may give us eternal life. We serve an amazing God. I know that this time of year is so difficult for many people. Some do not have family members to celebrate with, and some are grieving significant losses that
make them hurt and feel sad. My heart aches for those who have no one to celebrate with. God is ALWAYS here for us, and I hope that each person reading this feels peace and love from Jesus Christ himself.
I have so many friends whose health is failing as well as marriages that are failing. My thoughts and prayers are with all of you who are experiencing these problems.
We went to Granny's yesterday for a couple of hours. First, I went over in the morning to give her her pills and some banana bread.
Then I kind of forced her into the shower and washed her hair. She fights showers so bad. I know she's lying when she said she took a shower the day before. She hates getting in the shower, and frankly, it's obvious she's not showering, and it breaks
our hearts. I insisted, and she cooperated. I felt a bit like a bully, and I know she was embarrassed to have me help her, but I tried hard to be matter-of-fact and explained she used to shower me, and now I can help her, and it's no big deal.
Then I helped her get dressed in a new sweater I bought her for Christmas. She looked lovely!!!! I did her hair, and she was smiling when I left. When I came back, she seemed happy to be around her family, and we enjoyed our visit. Many people
were missing, and no one stayed exceptionally long. It's certainly different than years past. I love my granny so much.
night Kirk, Meghan, and the girls came over for dinner and opening gifts. We spoiled the girls so much, and they were very excited to open all of their presents. Thankfully, almost everything went home with them. We are left with one ball pit I am trying
to figure out where to put. We have a lot of toys in this house! My goal during this Christmas break is to clean out closets and their bedroom.
of Patrick's friends had posted a picture of something her son built her to hold her granddaughter's artwork. I showed it to him and told him I would love one. He gave it to me last night, and I was in awe! He did an incredible job, and it has their
three names on it. It's quite large- made out of wood with a rope to hang the artwork with clothespins. It's so perfect!!! He also gave me an incredibly painted electric panel for the cabin, by my niece Michelle, It has the mountains in the background
and a guy (Patrick of course) fishing with a fish on the end of his line. We are going to the cabin on Friday, and I cannot wait until he puts that in. It's going to look amazing! This year he blew me away with his thoughtfulness. I am so touched. I'm
not one for asking for presents or even expecting them, so to get something so thoughtful means so much.
We can't see
the girls today because they have a woodstove and I can't be around it. So Patrick and I will probably go to the movies and see Jumanji since that's the only thing halfway decent to watch. I did get him a game for Christmas, which he will probably wonder
why on earth I would buy for him as he is not a game player. However, this one is called "Hunt a Killer," and I think it will be fun to do together. It's something I believe we have 30 days to solve, and then another murder mystery comes. I love solving
mysteries, and I think we will enjoy playing this together. I hope he's not disappointed!
The Christmas decorations are down, and my house is somewhat in order again. I have a lot of organizing I need to do before the semester starts
again. Most of the organization needs to focus on my thoughts. I am still so scatter-brained and feel dysfunctional, to be honest. The steroids are rough on my mind, body, and spirit. I feel as if I am floating around on a cloud most of the
time. I've been awake since 0340 this morning. I made myself stay up yesterday without a nap. On Christmas, I had fallen asleep from 7-10 PM and then went back to bed at midnight and woke at 2, 3, 4, and finally got up at 5. I'm thankful
I am sleeping more now, but I must figure out how to sleep normally! We went to see Jumanji in 3D on Christmas Day. The movie was pretty good, but I did fall asleep a couple of times! We had a relaxing day.
Yesterday I watched Joyce Meyer while walking on the treadmill. She had an outstanding lesson about working towards your goals and living a life that feels fulfilled. I believe
I am working on this as I am going back to school to train in a new area that ultimately interests and fulfills me. She said that we must go in the direction we feel we are designed to go, so we may live a life worth living. She pointed out that
we all have the same amount of time in the day- 24 hours. It's up to us to utilize it in a way that brings glory to God and satisfaction to us. I disagree that we all have the "same amount of time," though, as many of us have lives that are cut
short. We do not know how much time we have on this earth, but it is up to us individually to make the most out of every second we have. Why waste a second on being angry, disappointed, hurt, or sad?
We often want to hold on to our "justified" emotions, but by doing so, we miss out on a lot of good moments. This is important to remember if we want to live a happy, satisfied, or fulfilled
life. We all have issues. We all have hurts and disappointments. It's what we do with those feelings that will determine our destiny. Will we end up bitter and angry, or will we accept what has happened to us and use our experiences
to teach others how to cope during challenging times?
Life is good, and it is worth living. My thoughts and prayers
are with those wrapping up this 2019 year who are dying and know that they will not see much, if any, of 2020. My first thoughts when I hear of someone's fatal diagnosis is, "do they know Jesus?" Living with Jesus in eternity sounds fabulous.
I miss my Logan, and I know he must love Heaven. I cannot wait to see him again.
Yesterday I started feeling angry. I am mad that my life revolves around how I feel each day. Am I tired? Am I hurting? Do I have the energy to
make dinner? Stay awake until a decent hour? Can I summon up the energy to visit with my family and friends? Can I carry on a conversation that doesn’t have to do with leukemia? Do I even have any interesting traits anymore? Am I annoying people?
I read on my support page about family members who aren’t supportive and tell the patients they are lazy. I realize how good I have it as far as support goes. Josie got blasted by someone who has had a bone marrow transplant for posting too much. The
girl is dying, and she was shamed. I fell asleep on the way to the cabin and then took a long nap, which means I was up again most of the night. Will I ever be normal again?
I made myself go snowshoeing with Ringo yesterday.
I wanted to quit a dozen times because it was so hard. I refused to quit and kept telling myself I did have the strength and determination to exercise. I certainly didn’t go as long as I planned to, but I definitely went further than I would have if
I had given into the excuses! I am planning to go again today. I need to boost my confidence up In my physical abilities. Unfortunately, I fell asleep late afternoon again and then was up most of the night. I have got to figure out how to stay awake or at
least nap early afternoon.
Yesterday I heard from many hurting people. One has a son with an SUD and is still using after
years of Addiction, and another has a mother who has dementia and is drinking; another has a mentally ill son and has had a lot of financial difficulties; another has a relative who was diagnosed with bad cancer. As if any are “good,” but this
one is not curable. My heart is heavy. Then I ended my very next late night by watching “Ben is Back.” The little sleep I got was filled with disturbing dreams.
I look forward to watching the church online today. I’d rather go in person, but I will take what I can get while at the cabin. Maybe I can find a church in Soldotna since I need to go
in anyway. I need to be fed. I need a touch from God.
I believe we have specific experiences for a reason. Sometimes what we go through might seem unfair and unjust, but there are reasons why we are dealt the hand we are dealt with. We can react with
anger and bitterness about our circumstances, or we can accept it and continue to be joyful and thankful that we have an opportunity to grow and thrive. Using our experiences to help others is the best experience ever because we will feel peace, hope,
and joy despite the hurt and disappointment. Maybe we weren’t living our lives the way we should have been, and the changes that came opened our eyes to understand how fragile life truly is and how important it is to value ourselves and others and, most
of all, how to be thankful that God is always with us.
We got back safely from the cabin. I sent Patrick a text and told
him how thankful I am that we have two beautiful places to share. God is so good and faithful. We don't deserve what we have, but we do appreciate it, and I give God all the glory for what he has provided for us. It's so easy for us to grumble
and complain when we really should be focused on being appreciative and grateful. Everything we have can be taken away in a split second.
received a call tonight from a friend whose husband had a bone marrow transplant, and she has cancer, and she has had two back surgeries in the past couple of months AND has a son with a substance use disorder. She is so positive and happy and such a
good person. She's grateful and appreciative of all she has. There is always someone worse off than us, so we need to learn to be thankful for our battles and trials.
We kept the granddaughters for New Year's Eve and took
them to the fireworks at Iditapark that the City of Wasilla put on. It was a great show but really cold! We bundled them up the best we could, including piling scarves on them. We girls kept the scarves over our mouths to keep warm.
It was challenging to find a place to park, so we parked in the Garden of Reflection parking lot, and on the way out, we stopped to see Logan's plaque, and I read it to his nieces. I broke down in tears as I felt the deep pain of his loss while thinking
about all the things we missed out on sharing with him. Another new decade, a new century he never saw, nieces he hasn't met, experiences he hasn't had.... So many things are going through my mind. I told each of the girls that Uncle Logan would
absolutely love them. They will know him because we are never going to stop sharing his stories or name with them.
am not one to officially make New Year's Resolutions, but there are a few things I want to ensure I do this year. Here is my list, and I hope to be held accountable for it.
Honor God in all I do, and spend more time in church and personal devotions.
Practice self-compassion regularly
Pause before speaking to make sure what I am saying is kind, necessary, appropriate, and helpful.
Exercise regularly and build up my muscle tone and
Graduate with my MSW with all A's this semester!
Get our business opened this summer, including starting our webpage.
Find the perfect social work job by fall.
Visit more with family and friends.
less on my deficits and more on my strengths.
2019 wasn't a bad year. It was filled with new experiences, joy, and adventure. There were lots of challenges, tears, sorrow, and frustrations too.
I think the biggest thing I took away from it was knowing that God has remained faithful through it all. I realize that so many are turning away from him and I must remember to always give him the credit and the glory and share his love with others.
Happy New Year. May 2020 be the year you thrive, grow, worship, and love yourself and others without trepidation. I pray for
good health and peace for each of you. I pray that we share the love of Jesus with every person we encounter. I pray for the healing of our nation, and health care and resources for all. I pray for the ceasing of persecution on Christians in other countries.
I pray for the safety of all. I pray for connections between people to be strengthened so no one feels alone.