Ramblings

This is getting really long. Being here. I miss my family, friends, house, ice maker, filtered water….. I miss a lot of things from my life and Noelle's.

Please keep Noelle in your prayers. May will be a rough month. Think of all the things that seniors normally do this time of year and remember all that Noelle is missing and will have to battle through:( Tough stuff.

Another thing we found out during our appointment on Friday is that one of the patients that Noelle has received treatment alongside passed away. It is so sad. His name was Terry. He loved his wife and kids so much. He loved to talk about them. He was finishing up treatment for cancer. His death had nothing to do with Envita. He died from a complication from his cancer surgery.

I need to value every day. Even as we sit day after day in this room. We are here. We have each other. Kiss your loved ones.

Over and over I am being told to be thankful. Lord, help me to praise you in the midst of all of this. Help me to see your blessings. Help me to learn what you want me to learn.

Week Six

Monday and Tuesday: Pretty regular treatment days. Though Noelle did have her first chiropractic treatment. He found major swelling in the lymph nodes on the right side of her face. Though it is a rough treatment, definitely a step up from regular chiropractic treatments, Noelle handled it well and did not seem to have any horrible pain afterward. Tuesday after treatment we stopped by Lush for a treat for a day well done. She picked out a face mask and two bath bombs:)

Wednesday: Not a good day. We did not make it to treatment. Pain and anxiety.

Thursday: We made it to treatment but Noelle was still not feeling well, especially nauseous. So we elected not to do the Hydrogen Peroxide and Vitamin C treatments. They are the treatments that upset her stomach the most.

Friday: Pretty good treatment day. Had a followup appointment with the Doctor. Based on the fact that Noelle is still struggling so much they are going to change up her antibiotic(s). I realized when I got back that he did not say which one(s) he was changing. I am sure we will find out Monday when we come for treatment.

The neurotransmitter test results were not back yet. He expects to get those results next week. He thinks this may be a key to Noelle's treatment.

We brought lists of Noelle's medications and supplements and asked if there were any that could drop off the list. She is having a hard time keeping up with them all. There were two supplements that she may stop taking.

We decided to extend her IPAC (insulin) treatments for another week. They were supposed to end on Friday. Since this is not a treatment we can do at home and Noelle has many neurological Lyme symptoms, I want to make sure that we take full advantage of this treatment.

It looks like May 15th will most likely be the day we return to Iowa. So we started to discuss "home care". We will have a home care nurse that will call us weekly for a month. She will help with the transition and be our bridge with our doctor. Noelle will go home with mostly supplements. This will allow her body to recover from all the antibiotics and other treatments. Many patients start to feel much better when they get those out of their symptoms. At this point is pretty hard to tell what are side effects of treatment and what are Lyme symptoms.

I have been surprised that Noelle did not test positive for more co-infections. I thought that would explain her extreme reaction to Lyme. I asked the doctor if the things that we have discovered (Lyme, HHV-6, Mycroplasma Pneumoinea, and Candida) explain all her symptoms and the severity of them. He said yes. He said Lyme alone would explain everything that Noelle is experiencing.

Lyme is scary. Protect yourself and your family. And if you discover you have been bitten. Please get a 30 day course of Doxycycline within 24 hours of discovery.

Fun Easter weekend!

Jake arrived in Arizona Friday late afternoon! We assumed with the time change he would be hungry, so we went to Rehab Burger on our way to the hotel.

We sat out on the patio. And listen to the burger Jake had: PBJ & Bacon Burger, "Freak your mouth out with this ridiculously delicious flavor combination. Peanut Butter, Grape Jelly, Bacon and Siracha Sauce." He had peanut butter and jelly dripping everywhere:)

Saturday morning was chilling with pancakes and "Ridiculousness".

Saturday late morning we went to the Phoenix Science Center. We started out with a starfish dissection, lego building competition, tug of war and a wheelchair race.

Then some yummy Asian food and happy hour! Noelle and I had gotten take out here but never eaten inside.

Lots of delicious gluten free options including flour-less chocolate cake!

The afternoon brought an amazing floral bouquet from my parents. Thanks mom and dad! And Noelle colored Easter Eggs. She was rather possessive about the whole process and would not let anyone help;)

I was a little disappointed that we did not make it to a church building for Easter service, but the kids and I watched our home service on the computer. Not quite the same, but nice. One of Noelle's fellow Lyme patients had an Easter gathering and we stopped by. It was very fun and I loved introducing Jake to everyone. Noelle and I got to wear our new "Easter" dresses.

Noelle had a lot of pain toward the end of the afternoon and Jake's plane was delayed but all and all it was a great weekend. Hope your Easter was as amazing. Don't forget to thank Jesus for His amazing sacrifice!

Test results

We received a couple more test results today. Noelle is clear of parasites but has two types of yeast, Candida albicans and Candida glabrata. This is not super surprising since she has been on antibiotics almost non-stop since September of 2012. This could be causing, or contributing to, her stomach upset. She also tested high for T/AT complexes. Which means she has thick blood, prone to clotting. We already were aware this was an issue as my family carries Factor V, a blood clotting gene. Noelle's Lyme doctor, in Missouri, had previously wanted to treat her with Heparin. We are unable to use Heparin because of the possibility of a (genetic) reaction. That is what caused Scott's mom's stroke.

She has been put on additional supplements and a prescription to address these issues. She is now on so many supplements and prescriptions that she really cannot keep up, especially with her unending stomach upset. I intend to make a list of all that she is taking and have the doctor prioritize them at her next appointment. We will also further discuss the new test results at that time.

This week has been up and down with symptoms and treatments. Tuesday was a very rough day pain wise. It was basically the equivalent of an E.R. visit. She got pain medicine and extra fluids, then we headed back to the hotel to rest. Yesterday and today were fairly good treatment days. Currently she is not feeling well at all. Headache, body pain, nausea…just crummy feeling.

Today Noelle was supposed to start the chiropractic treatment that is recommended with treatment. It is actually described as manipulative surgery. It is meant to open the pathways between the vertebrae. This should ensure that detoxification occurs. She was unable to start that treatment today. Four hours of IV treatment, five days a week is a lot. If you could join me in praying: if this treatment is crucial in her treatment that she would have the energy, patience, endurance, peace of mind to start and continue the treatment!

We are both excited that this is a three day weekend. Envita is staffed by mostly Christian doctors so they are closed tomorrow. And tomorrow Jake arrives to spend Easter with us!! It is a short trip, about 48 hours, but we are so excited. We are praying that Noelle will feel well enough to enjoy some activity. But we also know that Jake is so mellow that he will be content with anything.

Care packages!

Noelle and I are both encouraged by the notes and packages we have received! So wonderful to know that we are thought of and prayed for! Such a great distraction on days, like today, when the pain is bad!

My mom sent a great package with lots of fun stuff. We decorated Noelle's room with the Lyme pom-poms. She even found a super cute pink purse and the brand is NOELLE (even spelled "correctly"). How fun is that!

Aunt Karen sent a cuddly Build-A-Bear Bunny! Noelle is happy to have someone to cuddle with since she didn't pack Squishy, her cuddly zebra from home. She has dubbed her bunny Mrs. Squishy:)

We appreciate your continued prayers. This battle is tough. We made it in for treatment today but it ended up being mostly pain control. Noelle was frustrated because emotionally she felt like she could handle the longer treatment day that was planned, but her pain was just out of control.

Some weekend fun.

We try to get out a little on the weekends. So this is what we did last weekend:

Friday Noelle and I had massages. Totally medically necessary;) And I couldn't let her go alone! And, no, I am not into cat videos! This just made me smile.

Saturday night was movie night. We found a fun movie place that serves dinner. Pretty good movie, though I wish I knew enough to recognize more of the people appearing as themselves. Noelle looked so pretty for our date;)

Sunday, I was having an anxious day, but Noelle drug me to the Culinary festival! We had a nice time. Noelle was able to walk which was very enjoyable. We had yummy food: Corn on the cob with bacon butter, Indian food, Gourmet burgers, gelato, and cheesecake brownies! All taste size!

We are not in Iowa!

I am missing Spring in Iowa. Though apparently it has been a rough one so far. This past weekend in Waterloo it was 80 degrees on Saturday, had five inches of rain on Sunday, then snow on Monday morning. Wow. Scott said we had some flooding in our basement. I so miss the transition of temperatures, the flowers and smells. I have seen only one person mowing a lawn here. Basically there are not lawns. I have been trying to appreciate Spring in Arizona.

These are one of my favorite plants here. I love that they are orange. I would take some of these in my yard.

Flowering cactus!

Not a very good picture but this is a very full orange tree in someone's yard! That would be fun.

No idea what this means? All these pictures are from my morning walk. I don't have a very good phone so it is hard to take pictures. There are small mountains surrounding Scottsdale that I can see on my walk as well.

This is a beautiful sunset over the mountains one night when we returned from a drive.

I almost forgot the birds! I have not seen one robin, bluejay or cardinal. But when I go for walks there are quail everywhere!

Spiritual encouragement

I am trying to spend time in the word and in Christian books. I am reading in Acts currently. Paul is in Athens and he is teaching about this "new religion" (NLT). As he is defending/explaining, I was struck by how great our God is; how able He is! (Able to take us through this time of separation and illness!)

Acts 17:24-28,

"He is the God who made the world and everything in it. Since He is Lord of heaven and earth, He doesn't live in man-made temples, and human hands can't serve His needs - for He has no needs. He Himself gives life and breath to everything, and He satisfies every need there is. From one man He created all the nations throughout the whole earth. He decided beforehand which should rise and fall, and He determined their boundaries. His purpose in all of this was that the nations should seek after God and perhaps feel their way toward Him and find Him - though he is not far from any one of us. For in Him we live and move and exist. As one of your own poets says, 'We are His offspring.'"

I am also reading Lysa Terkeurst's "What Happens When Women Walk in Faith". It is really a devotional. It is a study of "the five phases of faith you'll pass through to achieve your dream". I don't feel as if I am really in the pursuit of a dream currently. At least not personally. WE are in pursuit of Noelle's healing. Compared to when we were in pursuit of God's calling to adoption, I am frustrated by a lack of spiritual calling in my life right now.

The books second phase is Famine. My heart resonates with that right now. Terkeurst says, "God sees you trying. He knows when you are doing the best you can."

But am I really doing my best...

Update

Long week. Noelle is having a pretty good day today but has continued to struggle with anxiety, pain and nausea all week. Tuesday she did not make it through all her treatments, mostly due to anxiety. Yesterday we met with her doctor for our scheduled follow-up.

Her testing for Lyme co-infections, Babesia and Ehrilchosis, was negative. Results for parasites and Candida are still not in. We talked to the doctor about Noelle's continued anxiety. He is hesitant to jump into a treatment without knowing what is going on. So Noelle will do neurotransmitter testing. This will show exactly what levels are affected on things like serotonin, gaba and dopamine (all neurotransmitters).

We also talked to the doctor about trying to balance the length of her treatment days. Mondays, Wednesdays and Fridays are her insulin days and we are there less than three hours. Tuesdays and Thursdays are everything else. If she makes it through all the treatments, we are there about four or five hours. We have started going in for treatment at 8:30 every day. I am hoping this will help Noelle last through more of her treatments on the long days. Yesterday she almost made it through everything. Last IV bag, about a tenth left and she was done! The infrared sauna is supposed to end her day but we have skipped that most days this week.

Ironically, I told the nurse that Noelle never vomits; she just gets super nauseous. Then Noelle had to throw up on the way home from treatment yesterday:( Such tough stuff.

We are officially half way through our eight weeks today! It is getting really long. I hate to be away from family and home for another four weeks. We are anxious for Noelle to show improvement. The doctor said if she is not showing some improvement by the end of next week they will consider changing her protocol. This probably means a change in antibiotics.

We are happy for two day of rest and no treatments! Enjoy the weekend!

Roller Coaster

Honestly, Noelle and I both love roller coasters. But I think we are both ready to get off this ride. It is full of ups and downs, emotionally and physically. Saturday morning I was excited when Noelle woke up and said that she wanted to go to the zoo.

It was an obvious wheelchair day. Noelle has been in a lot of pain. Our intention was that she would do a combination of walking and riding. That did not happen. She was in so much pain it was hard to watch her try to stand a few times to see the animals better.

I think we both returned to the hotel tired. It is hard to push a wheelchair for hours, especially up and down hills. The world does not realize how handicapped unfriendly it truly is. Opening animal gates, gravel surfaces, etc. make it exhausting. Then Noelle's pain became excruciating. It has done that a lot lately. Usually legs, sometimes arms. It is awful to watch her cry in pain and be able to do NOTHING. I have had to help her out of bed and to the bathroom multiple times this weekend.

As we left the zoo Noelle commented that all the people we were around had no idea how good they have it. You never do until you lose it. Just to be able to walk without pain. I feel so sad for the experiences that Noelle is missing. For the fact that leaving her bed is an achievement a lot of days. I pray and beg God to heal her, to give her back the life that she once had. I know that she will be an even better person than she was because of all she has had to endure.

We both lament the things that were, the things we would like to be. We are lucky to have many people that write and encourage us. Thank you so much! It means so much to us. I was reminded in one note of all that I miss about who I was. I struggle so much not to questions God. I struggle to find joy.

This is what I read: "I remember laughter and joy and such a deep desire among you to chase after and serve the Lord with your whole life. I pray you sense still that He is the God of all and how much you radiate His love."

I don't feel like I radiate His love any more. I feel like I am stuck in a survival mode. I feel like I am good at one thing right now. I do feel like I am a good caretaker. But I cannot handle more. Or at least I haven't figured that out. I desire to still be a good wife and mother to our other kids. I want to be a good friend. I miss serving others. My social anxieties have increased throughout this journey. It makes it hard to socialize when that opportunity presents itself. Scott said that he was having people over for dinner Friday and Saturday night and I honestly feel anxious every time I think about it, and I am obviously not even there! Once I would have said hospitality was one of my gifts.

Scott appears to be thriving without me home. It makes me wonder why I am so inadequate. Why I cannot handle more. One crisis and I am down for the count. I really want to know what God is trying to teach me. I need to learn more quickly. This drawn out process is killing me.

Say a prayer for every caretaker in your life right now. I cannot imagine those who have served in this capacity for years, decades. I need your prayers to reclaim the joy in my life. We need you to continue to stand with us in prayer and encouragement as we walk this path that God has allowed us to journey. Continue to pray specifically for Noelle's pain and anxiety. Friday marked the end of week 3. Weeks 4 and 5 are supposed to be the worst. SCARY! Our next doctor's appointment is on Thursday. We expect to have more test results at that time.

Same old, same old

I have had lots of people ask for an update. Here goes. Most days are the same. We go to the clinic. We come back to the hotel. She lays in bed to rest and I sit in the office chair next to her bed. We watch TV: Law & Order, NCIS, Food Network, and we finally got TLC to work. Right now we are watching the Duggars. Noelle likes her room dim so I cannot really read or do cross-stitch in here. When she is really anxious she does not want me to leave the room, sometimes even to get something she wants/needs. Anxiety has been worse than pain this week. Both of them are hard to manage. We have been trying homeopathics. She has Oxycodone for pain and Clonazapem for anxiety but we consider them "emergency" drugs to use every few days, not every day.

Wednesday night she did have a burst of energy, we went to the mall for a bit. It was the first time we have walked around a mall without a wheelchair in a long time! She didn't last super long, but it is always good to do something "normal" once in a while.

This is Noelle's favorite! We got her a couple of bath bombs. I got a fancy seaweed mask!