May Day. The day when we sneak flowers onto the porch of our neighbors and enjoy surprising them. It’s not a tradition of my generation, but my mother shared her experience with it. How I would like to get back to the simpler times in life.
Yesterday was a fun, yet emotional day. Gary picked us up from the airport the night before. We got to visit with him, Delanie, Ernie, and Ginny. All of whom have been important parts of our lives for many years. Yesterday, though, Gary, Patrick , and I went to Green Lake. I don’t believe Patrick had been back since he was there with Logan. He has a really hard time going to places in Seattle that remind him of Logan. After we dropped him off for his meeting, Gary and I went to see Samuel at the UW Hospital. Today is his bone marrow transplant day. Samuel looked good and healthy and I prayed over his recovery. I wanted to go see Ronald McDonald House again. I felt like I needed to see the brick we bought Logan to honor him. It was very emotional for me and I sat on the steps crying- wondering why I am alive and he is not. I remembered the fun times there with Casey and Meghan, and wished I could go back in time. My heart is broken, but this morning we fly to Reno to spend a few days with Meghan, Kirk, and the girls. Spending time with them will help.
The girls were ecstatic to see us. They didn’t know we were coming and when they saw us at the airport, they stopped in their tracks. Then they ran like crazy into my open arms. My heart was full and at that moment, all in the world was right. They still don’t know they are coming home with Papa and me. We keep telling them we are leaving Saturday and we will miss them so much. Baby Boe is adorable. She is a happy baby with a touch of Red hair- but no temper to match. We have missed the last four months of her life and it’s good to squeeze her.
Today we went to Virginia City, Nevada. What a unique old mining town. I found a Wonder Woman tin sign that I am going to hang in the girls room at home. I also found WW coasters and Scooby Doo coasters. Logan loved Scooby Doo- he was always my favorite, and now the girls love him! This is a way for me to get in touch with my childhood again.
I have had to take naps the last two days. I’m walking easier, but the fatigue still overwhelms me.
We went to Lake Tahoe today and had a wonderful time playing with the girls at the beach. Unfortunately, I seem to have some sort of stomach bug. I’m very nauseated. I don’t want a repeat of last time I visited the girls when I ended up in the hospital. Sometimes I just get frustrated because I always seem to have some issue.
The big girls love helping me check my blood sugar. They are quite good at it just like their momma was when she was their age. They check on me frequently to make sure I am okay. Some day I hope to be completely well and just be the “fun Grammie”.
I am waiting to hear if the Regenerative Clinic will accept me for either a stem cell injection or PRP- platlet rich plasma injections. Both should help my torn muscles and help me to walk and sleep without pain again. Dr. Hogan has no objections which makes me very happy. I don’t like the fact I will have to go back to Mayo soon, but I relish the idea of no pain!
We made it home with the two big girls. Three flights, spilled juice, shedding of clothes due to being wet, multiple bags, sleepy kids, me with no sleep for about a week and we are home! We arrived home about 0300 after collecting luggage, installing car seats, and driving to Wasilla. This morning the girls were enthralled with all their toys they have here. We visited Granny and then they went to see Grandma Jane. They are spending the night with Auntie Kate and I miss them already.
I look forward to Meghan and Boe arriving on wednesday. I wish they didn’t live out of state. I’m still nauseous and Patrick has body aches and nausea. We are quite the pair.
I spoke with a woman today that I had met only once before. She had responded to one of my bone marrow registration announcements on a Face Book site before I met her the first time. It is really funny how God puts people together. She recognized my name and told me she was the one who had responded to my post about the drive. I got to talking to her and found out her adult son has a bone marrow disease and needs a transplant. Unfortunately, he has no insurance and because he works full time, he can't get on Medicaid. She said his medication costs $90,000 a month! It's absolutely crazy how people in this country suffer from the high costs of medical procedures and medications. I pray they figure out how to get him insured so he can get the help he needs.
She also shared that she has a nephew who is a drug addict. He is currently living on the streets of Anchorage. She has a very similar story to another friend whose nephew is also living on the streets of Anchorage. My heart breaks and the tears flowed steadily as she shared her story.
I also talked with another mother today whose son is in prison. She thought he was doing better, but things came to light, and she found out he spent all the money from his tax refund and the job he had before he went to prison. She assumes it was spent on drugs. He denied it of course and told her she is insane and tried to divert the attention to the fact she opened his bank statement. She said her heart is broken and she wonders if he will ever really change. I have just about had enough of drug addiction and pain. I just wish Jesus would come back and take me home so I don't hear or feel anymore pain. Hearing about all the sadness just drains me emotionally.
I will end on a positive note. A cousin shared that she spent some time listening to worship music before going to work. She has a difficult job working with people with disabilities. This young lady suffers from extreme anxiety. She shared the time she took to listen closely to the words of the songs and the earnest conversation she had with God helped her get through her extremely difficult night. I was so encouraged to hear this and happy for her. I must remember that God is here for us. I will praise him in the storm. Even though it still rains, I will praise him.
My mind and body are both exhausted, but my heart is happy. Olivienne and Ailynn are simply wonderful and I have loved caretaking for them the past few days. I can’t wait for Meghan and Boe to get here tonight. All is right with the world when the grand babies are here. Today I took them to see their auntie and uncle at the greenhouse. Mark and Sharmin helped them plant a flower basket and an herb basket. So sweet! The girls had a fantastic time.
My mother‘s Birthday is today. This should be a national holiday . My mother is an amazing Gidly woman and I am so thankful for her. She invoked wisdom, honor, and love into every person she meets. She’s one of the very first people I turn to when I need comfort. I have so many friends who have lost their mothers or have terrible relationships with them. i am truly blessed to have my mom. She lost her own mother when she’s was only eighteen and that loss left a permanent hole in her heart.
Sunday is Mother’s Day and we will be honoring not only our mothers, but my Granny too. Granny is ninety and still going strong. Granny has also experienced a lot of loss in her life. She continues on and encourages me to be a better person.
I think about all the people who lost children to death and how difficult Mother’s Day is for them. I pray everyone finds compassion from others on this day. I pray for their hearts to be comforted. The loss will always be there, but I pray the pain lessens a bit as they remember good things about their child.
"You will see me and find me when you seek me with all your heart. I will be found by you" declares the Lord.: Jeremiah 29: 13-14.
How many times do we seek him wholeheartedly? If we truly seek him with all our heart, we will find him and we will have peace. In a world filled with turmoil and uncertainty, it's the peace of Jesus that gets us through the difficult moments, the stress, the disappointments, and the hurt we feel. Don't call a friend; call Jesus. Search for him and find him, and be filled with his presence.
"Trust in him at all times O people; pour out your hearts to him, for God is our refuge." Psalm 62:8
Yesterday I got to visit with two friends. The first, is a friend who I have been communicating with for a couple of years. We were "introduced"by her step-mother when Renee was diagnosed with AML. We have talked, texted, and messaged each other on FaceBook and have shared our stories, trials, tribulations, hopes, and dreams. It was delightful to finally meet this amazing woman of God in person. She loves the Lord and she never feared death. I was thrilled to see how well she is doing. I was really worried about her as she had a rough, rough time.
The second person is a dear friend I haven't seen in a few years. Marianne is a very busy lady. She was at the book signing for her latest book. She asked me to endorse her book and my comment and "credentials" are on her back cover. I was so excited to be part of her book in this way. Marianne has been such a big supporter and encourager for me. I am grateful God put wonderful people in my life.
Happy third anniversary to me!!!! Three years ago I was weak sick, skinny, and overwhelmed with the process of a bone marrow transplant. Today I am feeling much stronger, a little bit heavier, and more in tune with what is going on with my body. I have good days and some bad days, but mostly good days. I still am fatigued much of the time, I still suffer from nausea from time to time, I still have the bad hip pain, but overall, life is good! I am so thankful to God for bringing me through this process. Three years. How can it be? I remember it just like yesterday. Just like I can still remember Logan's and it's been twenty years since his. (in August anyway) It hasn't been an easy journey and I haven't bounced back as quickly as I expected or had hoped, but all in God's timing. I have to think about every movement I make so I don't hurt my hips anymore than they currently hurt. I don't like to be limited; I don't think any of us do. It is a hard thing to accept- these limitations, but we must do what is best for our bodies to heal. I appreciate having a husband who is still so supportive and continues to encourage me and cheer me on. He always says that my job is just to get better. After three years I really expected to have been back to the person I was before. Bone marrow transplant survivors call this "the new normal." I think all of we survivors detest that phrase, but it really is true. Most of us never get back completely to the way we were. I must admit I envy those who do, but I'm also happy for them.
It's all okay and I'm thankful to be here. I'm thankful to the mom in France who donated her baby's umbilical cord after birth. He saved my life. God is good all the time and all the time, God is good.
This morning was one of those "wow moments!" Something happened to make me realize that "all good things come to those who are called according to his purpose." I was on my monthly volunteer call with Be the Match when a lady introduced herself and said, "my donor lives in Wasilla, Alaska." Of course I asked her who her donor was. It was none other than Macaela Wolfe who goes to Church on the Rock and the young lady who registered at one of the drives held to help ME find a match! I know Macaela well and she's an amazing young lady and happens to be one fo my favorite baristas. It's truly a small world. I love how Macaela (and others) registered for Be the Match bone marrow registry in hopes of finding me a match, and then went on to match someone else. A life was saved because Macaela chose to help someone. Now her recipient is helping others through the process of bone marrow transplant. God is so good and he orchestrates things perfectly. I am simply in awe that I talked to Macaela's recipient!
I am tired and I do not want to be up. But, there is a cute little girl named Ailynn who insisted I get out of bed. She insists I must sit right next to her on the couch while she watches cartoons. She is two and adorable, so how can I say no? This cute little girl got into my Synthroid pills yesterday and had a mouthful of them when her mother found her in my room. Thankfully, she caught her before she swallowed them. This morning Ailynn asked about the pills and said, “I won’t do that again because next time I will get really sick.” She really scared me yesterday. This morning she asked, “Can I help you check your blood sugar?” She and Olivienne both love to help me stick my finger. These kids fill my heart with joy. I will miss them this weekend when we go to the cabin. We need to go down though because it has been over a month since we have been there. I sure miss it!
Last night we all went to the Palmer Alehouse and listened to some music. A few of Meghan’s friends were there, and my friend Dorothy came with her daughter. Afterwards they came over and visited at my house. I haven’t enjoyed an evening that much in quite awhile. I’m thankful for good friends.
Cabin life is awesome. I’m getting much needed rest. I did attempt to take Ringo for a walk, but kind of already regretting it due to the soreness. I’m fed up with the limitations. The fatigue seems to be getting worse, as do my hips. I’m 51 years old. What am I going to be like at 60??
I have many friends going through treatment right now and am mad at myself for complaining. One is leaving the country because American doctors can no longer help her. Another turned to immunotherapy because chemo stopped working. The immunotherapy made his body be full of inflammation- his cancer tumor markers doubled in a month. They took him off that and put him back on chemo. I’m so fed up with cancer and the destruction it causes. It’s like a hurricane roaring over the land and causing destruction. Or I can compare it to the volcano that’s currently erupting in Hawaii. Just as the volcano spews lava over all the land, is what cancer spews over the patient and the family. No person is untouched and the destruction is overwhelming.
Sometimes life just sucks. Patrick encourages me to focus on what I CAN do and not what I can’t. I can’t helo but wonder if he regrets marrying me. I sure have lot of problems. I’m thankful to have him by my side.
Marriage... I got to watch a live FB wedding ceremony yesterday. My young friend got married in TN and I couldn’t attend in person so it was wonderful I could see it online. It was a beautiful ceremony and I listened carefully to the words of the minister. He emphasized how important it is to put God first in their marriage and how they need to truly love each other and let nothing come between their love. It was sweet and true.
The royal marriage ceremony was also held yesterday. Prince Harry married Megan Markle an actress. I didn’t watch the ceremony, but heard from many they did. We women are fascinated with the thought of marrying a prince. We love our pretty gowns, our servants, and being looked upon as a beautiful princess. It’s a fairytale come true for a select few in the world. Often when we first get married, we think WE are going to have a fairytale life. But reality quickly sets in and the woman realizes she did not marry a prince and the man’s eyes are open and he sees his wife’s is not the princess he thought she was. Sometimes he might say he married the wicked wife from the east instead. Or was the wicked wife from the west? Regardless, the scales quickly fall from our eyes and we see the real person- a man or woman who is not perfect.
After watching my friend’s wedding, I saw a post on my AML support group from a lady who is being treated for leukemia. She just found out her husband of twenty-five years has been cheating on her and he left her and their children for this other woman. Here she is- fighting with all she has to live, feeling ugly, helpless, and weak, and he finds someone else. The vows “in sickness and health” seem to not apply to him.
But recently, I have talked to other wives who are having problems in their marriage. One has a husband who loves God and they are leaders in their church. However, shortly before she was diagnosed, she discovered he had an addiction to pornography. It obsessed him and she was shattered. While she fought her hard battle to live, he seemed to put it on the back burner by ignoring the addiction and focusing on her. Now that she is improving, she is recognizing some of the same behaviors emerging.
Another lady confided she and her husband have been having a lot of marital problems over the years and it’s getting worse. Her husband simply doesn’t care about her, she feels. He does his own thing week after week. She is lonely and he just drinks his problems away. But drinking only makes things worse.
Yet another confided she is not heard in her marriage. She’s been married for a long time and her husband just stopped listening to her. He doesn’t appear to hear anything she says because he fails to respond. When she tells him things, she assumes he heard her, but several days later he asks her about the subject acting like he’s never heard it before. She said he doesn’t ever want to sit and talk to her unless he’s drinking. she said he’s turned into a sloppy drunk and she doesn’t even want to have a conversation with him because it grosses her out to talk to a drunk.
Someone else confided in me her young friend,who has young children, has acknowledged she’s is an alcoholic. She wakes up most mornings not remembering what she did the night before.
Lately I have been hearing more and more about alcohol destroying lives, jobs, and marriages. I have been so busy focusing on the Opioid crisis, that I havent paid attention to what alcohol is doing to our loved ones. Alcohol is legal so we fail to attach the stigma to that like we do illegal drugs. Two years ago my cousin died because he drank himself to death. Over thirty years ago,another cousin was killed in a drunk driving accident. Both he and the driver were drinking.
Life is difficult sometimes. Sometimes we don’t get the things we want, we may not like our jobs, and maybe our desires have changed. But, the day we choose a substance over praying to God to help us with our problems, is the day we chose to dance with the devil. The devil appears to want to help us forget our problems- escape from reality, but once he has a hold on us, he’s hard to escape from. He fills our minds with lies, and tricks us into believing we aren‘t doing anything wrong.
We must get a handle on this and fight back for the jeopardized marriages and for those who struggle with their drinking. Alcohol should never be used as a crutch to survive. Recently I was in an airport and took note of all the wine bars, sports bars, and otherl restaurants that served alcohol. We have become a nation that accepts and expects us to drink all hours of the day and night. It’s socially acceptable to do so. People who don’t drink are sometimes scoffed at for being “better than everyone.” It’s not that the non-drinking person thinks they are better than the drinking person, they just choose not to make it the highlight of their day or life. When are we going to find a commonality with others without drinking? And when are we going to put GOD before alcohol? It’s time to remember to the words of the minister who performs marriage ceremonies . Put God first and let’s no man divide your relationship. Let no man tear apart what God had joined together. Honor one another and be respectful. Listen to each other and above all, love deeply and kindly.
My parents come home tomorrow!!! Yeah for them! They won't like the terribly disappointing spring we are having, but hopefully they will be happy to be around famlly again. Yesterday I changed the sheets on their bed and emptied out all the rotten food in their fridge. Oops....Mom forgot that! I'm going to stock them up with a few things so they won't starve Thursday morning. Today I will vacuum and sweep their floor up in anticipation of their return. I'm very excited if you can't tell. My cleaning will never measure up to my mother's, but hopefully she feels like she can relax a bit and not start scrubbing.
I just wrote two more appeals to my insurance company for claims being denied. I have this ongoing problem with them and it's really frustrating me. Most of the time they eventually pay it, but I have to work very hard at it to get them to do so. I had a mammogram at Providence Hospital. I checked on their website and Providence Hospital is an "in network" facility. Mammograms are paid at 100%. They processed it out of network TWICE and didn't pay it. I verified again today that Providence Hospital is covered. They tried to tell me that certain departments at Providence are not in network. I call ***** on that one. So the appeal is written and I will send it off. The second one is for Orthopedic Physicians. If you remember, their office is not in network- but NO office is in the entire state of Alaska, except for offices that see Native patients. I appealed that last year and they agreed to pay it, but then they process it out of network. After arguing with them to reprocess it, they did, but only paid 37 % of the claim. So once again, I have had to write out an appeal to reprocess it and pay 100% as I was told they would do. I'm so fed up with this. I know they have a goal to have people get frustrated and give up. But they don't realize how stinking stubborn I am!!!!
Finally Mayo clinic called me back only to tell me the person in the Regenerative Medicine clinic would call me today or tomorrow..... I have been trying for three weeks to speak with someone about the potential hip procedure. They just don't care that I hurt all the time. On Saturday we went to an estate sale and I bought a walker. I just don't know if that's what I'm going to end up having to use when the pain is unbearable to walk without something. I'm just so tired of all this "recovery" stuff. I don't feel recovered. I want to be normal! I'm too young to struggle to walk or move. Now I have something odd going on with my neck. It's sporadic, but feels like an electrical current going through it. Patrick thinks my vertebrae is twisted. I have an appointment with a chiropractor tomorrow to check it out. I'm a walking disaster. At least I can walk!!!!
Do you ever have days when you feel like you are batting a zero all day long? This is one of those days! I have four refunds supposed to be credited to my credit card. None of the credits have been applied. The skin care company I ordered from said they "can't find" the return. I had to return it because it made my skin turn red and I got a rash. Then I used my cell phone insurance to pay for a new phone, but then mine started working again. I sent the replacement back. UPS Wasilla told me they would scan it immediately to show it was received and processed. But guess what? Asurion (the insurance company ) said it doesn't even show it was dropped off!!!! I have to look for that receipt. Then I called MIcrosoft to ask them why they haven't credited me for my Office 365 return. (I had already purchased another copy for five computers with my new laptop purchase) They said their computers are down and I would have to call back later. Then to top it off, I have something I'm supposed to do by next Tuesday. It's online, but the link is not posted. I have emailed the person in charge two days ago and she has not responded. I have looked to others for help and no one can help me. I'm just about fed up with this day.
The nurse with regenerative medicine called me. She said, "The doctor said it's a flip of a coin if he can help you." She went on to say that they would only do one hip at a time, which means two additional trips to Mayo this year with no data to back up the Tenex procedure on my hip. So why would I want to go all that way with a 50/50 chance of it working?? I called our insurance company and got a number for someone in network in Seattle. They won't even schedule me unless they view my medical records first. I'm not a happy gal today!
Wendy Hale and I had an appointment with the Mayor of Wasilla today regarding the Garden of Reflection. If you don't know about it, it's a beautiful section of the big park in Wasilla. It was created as a memorial garden for those of us who lost loved ones who had no cemetery to go to. I walked in to his office and promptly threw his couch pillow on the floor. I didn't mean to, I am just not skilled at holding something in my hand and trying to move something else. Thankfully he broke the ice by insulting me which cracked me up. He said, "Wendy told me you were a klutz!" She really didn't say that, but it was a good attempt to make me get over my embarrassment.
Casey finally got into the court ordered inpatient treatment center today. Please pray with me that he stays there till he is officially dismissed and he learns new coping mechanisms to conquer drug addiction once and for all.