I went to a funeral service on Saturday, a younger childhood friend of mine who had left this life too early. The message was simple and sweet and the point of it all – we were there with the purpose to remember, grieve, and love, not to cast our judgment.
I left with the phrase, “There but the grace of God go I,” ringing in my ears.
I am a bull in a china shop when it comes to relationships and life! I thought, “I am sure one person that needs a lot of grace to be in people’s lives.” I trust very few people and let very few into my innermost thoughts. If you think I overshare, here, there is actually MORE you don’t get the privilege of knowing!!! How about that? And even if I let you in, you’re on, like, a 10-year probation period to see if I can really trust you. It’s part of my past, part of something I am working on, and if you can’t accept it, I am sad, but I am okay with it. Very cautious with my heart.
For two days after my last post, on changing the negative thought life I was condoning for so long, I felt awful. I could not combat the dark voices in my head and wasn’t feeling supported in my environment. It was so hard. I had just written about overcoming negative self-talk and the process by which God was showing me to do it. There seemed to be a cement veil between what I knew when I typed my blog message to when I needed to act on my message. I was crushed.
My consolation was to hide, to isolate, to protect myself. I know that pattern isn’t right, but it’s self-preservation. We go back to what we know our brain tells us we’re in fight or flight. I muddled through Monday, still not quite able to bounce back. Monday night posed an even bigger struggle as I was challenged and defeated. I didn’t understand. I didn’t do anything right – I didn’t talk right, I didn’t listen right, I didn’t apologize right, I should have done this, I should have done that. I was bad. Very, very bad.
Tuesday came in with a busy day and I slumped my way to the dentist for a tooth extraction. Ugh, right? As I sat, I texted, and when I got home I couldn’t sleep. I was just so disturbed by my bad feelings and overwhelmed with confusion.
I am 100% confident someone prayed for me about 2 on Tuesday afternoon. Thank you to whoever did this! I am aware of the Spirit manifesting its presence in me and I knew I felt God. I felt His peace, spirit, and power come back to me and I knew, with certainty, I wasn’t as bad as I thought I was. I got confidence in myself because of God’s confidence in me, through the mercy of Jesus, and by the work of his Holy Spirit.
I went home and tested His will, and found that instead of approving my confidence, it disproved what I had been feeling so sure of moments before. And just when I thought I was a real whack job, the mystery unfolded. The light came on. In a precious little twinkle of His love for me, He gave me a glimmer of His sovereignty. God gave me the chance to show pride, arrogance, and the muscle of how I had been wrongfully accused and treated. He also gave me the opportunity to be His very precious daughter who is gracious, abounds in mercy, and chooses love. I chose love! I chose to speak softly! I chose to speak life!
My confusion about how bad I had been quickly withered away. “There, but by the grace of God go all of us.” We are not here as judge and jury. We are here to love. We may do things differently than others, but if at the heart of it is love, the intention will always be revealed as pure.
You’ve got the patient. Most obviously in this case, my sweet mama, Sue.
Pictures with “Magaw” February 2016.
You’ve got the cancer. Depending on the cancer location, type, and staging, you have a very unique and specific disease process that responds as uniquely and differently to various treatments. We’re dealing with adenocarcinoma of the small intestine. I say “we” are battling this cancer, because in a lot of ways, this has become a group fight:
You’ve got the caregivers. Those whose lives are directly impacted by the patient’s cancer and treatment. My sister, D’Ann, husband, Toby, the three little critters, and me. Family near and far.
You’ve got the concerned loved ones. Some that you’ve known forever and some that you’re lucky enough to meet along the way.
You’ve got the medical staff. Everyone you encounter: janitors, nurses, lab techs, radiologists, and even those doctors.
If you’re really lucky, if you’re really blessed, you somehow also get this really great community of supporters cheering for you.
We are sincerely blessed.
As we come back from mom’s cancer surgery and HIPEC treatment in San Diego at the University of California, it’s taken a bit of time to let the dust settle and fully consider what just happened. The roller coaster has whirred, screeched, twisted, and upended all of us, most intimately, mama, and as we slowly lurch back into the level resting position at the end of the ride, it still takes a moment for us to gain our feet and to brace ourselves again. A new chapter.
We’re home.
The cytoreductive surgery to remove all of the cancer and heated chemotherapy went… they went amazing! It is a little shocking to report that, all in all, there were 21 tumors taken out of mom’s abdomen, liver, large intestine, omentum, and rib cage. 19 in this surgery, 2 in March. They were all relatively small, marble sized to one mass that reached index card size. By comparison to other patients who receive this cancer treatment, mom’s tumor load was considered “low volume.” They fight way bigger wars than this and win!
How we found her the day following surgery. So many bells and whistles.They sloshed the chemotherapy around in her belly for 90 minutes following a surgery that took about 5 or 6 hours. We were initially told the whole procedure would take 8-12 hours. We saw her in recovery by about the 9 hour mark. The pain was intense, but she was closely monitored as an ICU patient throughout the evening. ICU was overfull, as was the remainder of the hospital. Mom ended up staying in the post-op chaos for a few days too long, until a room cleared up.
This is in recovery within a few hours of the surgery. She stuck out her tongue for the kids. I think she was in level 8’ish pain.
Sporting an incision down her belly, about 14″ long, there were good days mostly, with a few bad pain days as they tried to adjust and taper her medication. The tumors behind her liver were growing, oddly, through her abdominal wall into the muscle. This muscle had to be removed, a large resection of about 5″ in diameter. Ow. This site is still causing sharp stabbing pains, muscle spasms, and intense soreness.
We were told there would be a 50% chance that something that would require medical intervention would happen – an infection, a bleed, a somethin’. The only kink in the system became the adhesive from a band-aid on upper epidural site. There was a clear bandage placed over this line to keep it in place on her spine, just about shoulder blade level. She was able to press a button to release medication into the spine which blocked the pain from her rib cage down and still allowed her legs to function. The band-aid, about 3″ x 3″ , by day 3, created a rash the size of Rhode Island on mom’s back. The rash blistered, festered and grew. There is still a deep brown tone to her skin where the reaction occurred. This requires hydro-cortisone cream. Of all the things that could have gone wrong, we get to rub some cream on it. Sincerely blessed.
She walked up more steps than the physical therapist had asked her to. Stretched her IV cords. Show off.By day six after the operation, mom had surpassed the expectations of the physical therapist. Dr. Baumgartner and his nurse, Lisa, were both encouraged and pleased with mom’s post-surgical resilience. They released her over to me on day seven.
Leaving the hospital! See ya, Thornton!At this point, I had flown back and forth to San Diego, twice, as I wrapped up Mother’s Day and more at the flower shop, with very little to no rest a night or two. I relieved my sister from her 12-hour hospital days and she immediately flew home and went back to work upon landing in Boise. Mama taught us to work hard. Not gonna lie… it was daunting.
Upon getting to our hotel, I grocery shopped, started a medication log, and then we slept. For two days mom and I slept and ate sandwiches and did laps around the balcony of our hotel. And we slept. Sincerely blessed.
Aunt Shannon took the kids to build a bear. Dressed in Wonder Woman attire, she says, “We love you Magaw and mommy!”Instead of a 14 day hospital stay, we ended up making it a 14 day stay in San Diego. Mom literally rocked it. I believe all the of the prayer has kept this genetically aggressive tumor from reacting the way it is wired to act, God’s protection. Somehow, mom is just defying the odds of this cancer prognosis.
This year we found out mom’s cancer was back in January. We were told in February that doctors in our location could do nothing more to help her. She was given the choice by her oncologist to let the cancer grow and take chemotherapy after the disease had advanced as a way of “slowing the cancer down” and prolonging life. Mom had taken this regimen of FOLFIRI and responded poorly. It made her feel sicker than the cancer. We left the oncologist’ office feeling down, but hopeful that our surgeon would be willing to help us by removing the tumors.
The Idaho surgeon refused to operate and refused to help us find a surgeon who would help us. That was a sad day.
In the following weeks we were denied service by MD Anderson in Houston, Texas. – reportedly the best cancer institution in America. Without hesitation, I called a number in our back pocket. A Facebook comment by a long-distance friend. We called the Moore’s Cancer Center at the University of California – San Diego. That phone call was the first time I had hope in a long time. Thank you, Kate.
We ended up with a phone interview with our new surgical oncologist, Dr. Joel Baumgartner, in late February. This led to a laparoscopic procedure in San Diego in late March. We also went to San Diego in April for a pre-operative visit. And, finally, we are home from our May visit with the best possible news.
Mom and her doctor. This was taken the day following surgery.Somehow, it’s a little hard to celebrate. I think we are all scratching our heads thinking, “What now?” I mean, really, just heal and hope, right? It is a new blaring reality that mom will need follow-up visits with doctors in San Diego and we will start this in July. It’s not over yet. You try to keep both feet on the “miracle” side of the line, but you know there is a scan in a few short months and more San Diego.
At this point, I know two things. There is no way to predict what will happen in the future and I am just trying to rest and breathe and lay it all at His feet. This is so hard for me. The second thing I know, is that it is impossible for me to thank all that need to be thanked at this point. I must give all glory to God, because there is no way to put a name to every act of kindness that has been shown to us.
Super blessed.
Another layer to this cancer thing: the story itself, as a whole, and the hope it provides. If anything you see in us offers hope for you or your loved one’s cancer, know that it is God shining through us as He has offered this path for us. It is one of the hardest, frustrating battles that we will fight, and it has taken a lot of courage on everyone’s behalf. Getting to tell the doctor and his staff thank you for being willing to try the save my mom’s life was humbling and hard and real and it wouldn’t have happened if all of the other layers – the love of those near and far, our family and friends both new and old, the angels He has planted among us, the rejection, the open doors, the prayer, the financial support, the plane tickets… all of God’s intricate design working together for our good.
I have a moment. One unoccupied, take advantage of the quiet, moment. Life is blurrish.
In January, I had the mindset to sell the flower shop. My beloved. I was realizing my place was to support Toby and our children and I was feeling defeated in my physical self. At that time I put the shop on the altar of sacrifice.
Little did I know that February would upend me and despite my notion to sell the shop, I didn’t have time to prepare. I was trying to run a business, Toby had to be gone for work, Valentine’s Day, I prioritized finding a surgical oncologist for my mom, and then there is house and children and that silly MS thing. I found myself with no time to organize and inventory and prepare the paperwork for the proper sell of a business.
What is my goal? Take what I can get and get out quick? Or, wait, re-stock, re-group, and take the time to sell it well. I still haven’t finished my research on how to valuate a business. My business. My mind is always whirring and positives and negatives both stung me hard. With all of this cancer talk and not knowing what was to come, I chose to cling to what I knew. Ultimately, my brain and my heart couldn’t decide if I could lose them both. My mama and my shop. If I was going to lose my mom, could I stand to lose the structure that the shop forces me to have?
I’d like to think I was one of those who would just pick up the pieces of life and keep keepin’ on. But, I know myself. I know how chronic illness and depression pull you into idleness and days of pain turn into months and years of pain. Pain, regardless. I need something to draw me out. The intention of the shop was to be that place. But, that place had turned into something to avoid. Paperwork piling up, behind on bills, taxes overdo, more bills, and all the people… people I loved with relationships that turned bitter. Life took a hard twist and friendship was broken and things at the shop aren’t the same. And, things got more complicated.
The complicated issues of cancer on top of the complicated layer of flower shop on top of the complicated layer of family with three complicated kids on top of the layer of complicated MS on top of the layer of complicated everyday life… would the fabric of my life be softer without some of these layers? Could I weave a more fluid life?
I could. I think I could.
But, then my choices to fight hard would turn into the easy choices of submission. Submitting to cancer doctors and surgeons who gave my mom up for dead. Submitting to my presumed future disability instead of doing what I can now. Submitting to dreams left unfinished. I know reality, and I know that I may do some of these things in the future. I know submission can be a beautiful thing when done for the cause of Christ. With these things, however, I am not there yet.
We are waiting for biopsies and tumor board meetings and surgery dates for my mom. She has a very realistic chance at a few more years of life, instead of certain death. We are fighting hard at the shop to pay off debt, then to restock, then to start growing again, all with the thought of making the business a more valuable asset to sell at the right time. The right time. His time.
I’ve been learning about hope. Hope is trusting in His timing. And, the thing is, is that if we have hope in God, we have hope in two things. We have hope that even if cancer hits hard, we are heaven bound because we believe Jesus died to make this possible. We have a second hope that God isn’t going to leave us hanging. We may be hanging by a thread sometimes. A complicated, barely there thread from the complicated fabric of our lives, but we have hope that He won’t leave us that way. All this hangin’ makes us stronger and soon we are swinging into the next step He has planned for us. His plan for us to have a good life, a beautifully complicated mess, and have it to the full. Amen.
Though there were hurdles, it appears as though we are getting one step closer to figuring out the cancer this round. Through heartfelt emails and sincerely apologetic phone calls from our contact at UCSD, we found out we are on schedule with the exam and laparoscopy this Friday. As in two days from today.
With humbled hearts we accepted plane tickets from cousins Scott and Terra, using up most of their air mileage because of the last minute flight and that whole spring break thing we intercepted. We will arrive in San Diego and be greeted by my childhood friend, Mischa, who is offering us taxi service and a place to stay for the weekend. We will use a debit card with funds given to us by loved ones. It is overwhelming. Hard to comprehend. Something about ‘every good and perfect gift is from above…’
Even though we know this test may not bring all the answers we want, we will know, with certainty, that we tried every surgical avenue possible. As an advocate for my mama, that makes every ounce of effort I have put into this worth it.
Tomorrow we will play in the California sunshine and make a memory or two. Friday, we do work. My questions and concerns are ready. Mom’s got her stretchy pants packed! Exam in the morning, laparoscope in the afternoon. We should know that evening whether the cancer is treatable. Late Saturday we will be home.
We may not have the answers, but we’ll probably have a different point of view.
My poor mama is still waiting to hear what the doctor thinks about this cancer business. Because the scans the doctor needed could not be done all on the same day, but four days apart, records were also sent four days apart. Which means half of our material missed their weekly meeting times. I was being gracious when I said last week that hopefully by Tuesday, as in today, we would have an answer. I think God took it as an invitation to strengthen my patience.
And, the answer we’re waiting for isn’t even an answer. It’s just the next step.
This is chronic cancer.
You brace yourself repeatedly with one foot ready to adjust and move forward with the next treatment step, while the other foot is still trying to keep things stable where you are in case the news isn’t what you want. As the deadline to the mini-surgery approaches, it is seriously scheduled for Friday in San Diego, and we don’t even know if she is eligible, or the if the cancer is too far advanced, there is certainly a heightened sense of stress and tension.
Trying to choose peace.
Wanting to relax and rest in Him.
Super hard for me.
My brain is mostly a mess. My home is 68.7% mess. The flower shop is 65% mess. Easter has arrived in the store and fragrant lilies are taking up lots of space. Not knowing whether or not I will be there this weekend also weighs on me heavy. How do you prepare a flower shop for the florist to be gone? That’s a good pickle you got yourself in, Dana. Not enough time or finances to train someone. I have surrendered to doing my best. My mama will come first, that is my choice. I believe God will honor that and protect the rest. Dude, that sounds so good in theory. Application is the bugger.
As we wait to hear the results, please pray. Pray for us to respond to the doctor’s decision with ease and grace. Pray for us to be patient. Pray for my mom as she deals with so much hard uncertainty, once again. Pray for healing and hope. Amen.
My blog is my own now. Still hosted and things, but www.bloominginidaho.com is all plugged in and it is really me. $73 dollars and about an hour, fine, two hours of user-related technical difficulties later, and it is just me! This isn’t the beginning of the blog, but in a very real way, it is.
I feel like introductions are certainly in order.
I am Dana. I am 36, married to sweet Toby, a mama to three of the sweetest naughty kids on the planet. I am a small town Idaho grown girl. We moved to Weiser, temporary, when my mom was diagnosed with cancer in 2005. My husband is an amazing computer guy who does stuff with printers that I can’t articulate for HP in Boise. He has worked there for 15 years or so, with no education of sorts to speak of. He is hard work and determination.
We bought a little flower shop in Weiser for me to play with in 2007. So much for a temporary move. Two little girls in tow, we blossomed and tried to figure out this business thing. We grew and we changed and we learned. Somehow, from knowing nothing about flowers when I first walked in the little shop, it is still rooted in the little country town.
Through the business and broken bones, the disciples found us. We found Jesus at 30. This relationship rocked our world and changed our life’s direction.
In 2013 or 2014, after being sick since my late teens, I was finally diagnosed with Multiple Sclerosis at the Mayo Clinic in Scottsdale, Arizona. All during this medical battle, my husband took his aggression out on the mats. Perhaps, his lifeline through the physical, financial, and emotional rollercoaster that chronic medical problems can bring, he worked through it positively, healthy, and hard. He earned his way to a brown belt in Jiu Jitsu and his very own studio sits right next to my sweet shop. As he continues to fight on the mats, I continue to fight neurologic illness. The disease continues to reveal itself in an atypical way, but at least, after fifteen years with chronic disease, I am taken seriously.
Almost as serious as cancer. Ha. My ferocious mother has been battling adenocarcinoma of the small intestine for over 10 years! This is a rare diagnosis and she was initially given an 18% chance to make it two years. We have been blessed with so much time. Unfortunately, a lot of that time has been regrouping from 6 cancer reoccurrences and eight total surgeries. We are now fighting a more advanced stage of the disease and are presently working with doctors at the University of California at San Diego Moore’s Cancer Clinic to see if an advanced surgical and chemotherapy treatment would be helpful to treat mom’s cancer and give us more time.
My husband helping me get lots of pictures with my mama. I realized I didn’t have a lot of us together. ❤
There are so many layers to my little small town life. My intention with this blog is to share the work of God within these layers so that others might see Him. I’m not always positive and unicorns and rainbows – I battle depression and anxiety, but I’m working on that. Always working on that. I am a rough-edged work in progress. Something about being raw and real about it has seemed to help others. I’d like to share the story of my mom and my health battle’s as they are with hope and with grace.
I’ve been sitting on this gift of writing afraid. Afraid to call it what it is. A gift. It is mostly easy and natural to me. But, I’m too afraid of my own insecurities to put it out there.
So, here is me listening to the little angel He sent me last week, serving with the Spirit of His power. Amen.
December! I don’t know how this happened. December? 2015? Life has felt good and slow and easy. It surprises me that I type that because, really, we have been pretty stinking busy and stretched. But, it *must* be a God thing, because I don’t think I should have this much “okayness” with life right now. I know that God is with me because I can look back at the chaos life has served me and feel okay. Not just okay, even, but, peaceful. And, there is joy…
The pain isn’t keeping me down all the time, but it’s a subtle reminder of growing disease. A year ago I was walking a couple of miles everyday. I am thankful now, just to walk to my car sometimes. I have been using my hands, more and more, to walk up my thighs as a way to help myself up from a seated position. We’re going to get some of those handles installed around the house, sooner than later. 35 and hips and back growing too weak and painful to stand up without assistance. Humbling.
The reality is, it’s looking more and more like I drew a really bad lottery… twice. Though I have only been diagnosed with Multiple Sclerosis, I also have positive blood tests for Stiff Person Syndrome (SPS). SPS is rare. Super rare. 1 in a million. My neurologist is treating me for it now with every prescription most Google experts recommend, with the exception of anything IV. That is saved for when it gets bad. I thought I might go to some real life expert in Seattle to get the official diagnosis, but… I am being treated now. Which is more than a lot of people who are and are not diagnosed, and suffering, are getting. For that, I am thankful. For right now, it’s the best that can be done, regardless if I have an official diagnosis.
After 15 years of dealing with the medical community, I sort of have an idea of which battle to fight. If, in fact, this is SPS, I am still at a mild stage of the disease, but there is progression. Particularly, the lower back and hip problems. I want to be the fighter.
I want to keep making to-do lists that are too long and planning my church service months in advance and I want to keep daydreaming and pushing this little flower shop along. I want to cuddle my boy and chase the girls to all their activities. I want to see my middle schoolers thrive in Jesus and my Bible study ladies devoted to God. I want to fight.
I have such a great coach in my husband, Toby. He routinely inspires kids and adults into greatness at his jiu jitsu classes, at youth group, or in his sermons. How fitting that God would pair me up with someone so encouraging and strong.
My husband, Toby, and my mom, Susan, at the annual community Thanksgiving Dinner our family hosts in Weiser. And a bag of turkey gizzards.
It’s also ironic, or completely DIVINE, that I have been able to watch my mom so closely fight her cancer over the last 9 years. Although life has been cruel, hard, lonely, and unfair, here she is! Doing the best she can, where she is, with what she has. That 18% chance to make it two years. Ha. After having small intestine cancer reoccur 6…7 times (I honestly lose track), surgery after surgery, battle after battle, she gets back up and tries again. Most would have succumb to the cancer. The pain, the bills, the depression, the weight of it all. My mom has endurance and heart. All bundled up into a beautiful smile and the most tender soul. She is a fighter.
God is good, I am always loved, and I will fight, too.
Just waiting. At the end of the month I will be going to OHSU in Portland to be evaluated by expert neurological docs. We are hoping they might be able to distinguish if I have spinal damage, MS, or something totally random that we haven’t even heard of yet. It takes a great amount of courage to believe God can make this mess beautiful. He can. I’ve seen it over and over in my life. It’s just hard to apply that to yourself when you are in the throes of disappointment, discouragement, pain, and frustration.
Life just keeps getting messy. Even with this major appointment on the docket, life doesn’t pause for us. The flower shop is very much a fourth child. It could be a really great gig for someone. Honestly, it does pain me to think about selling it, but I think that’s what it might come down to. Being the only shop in Weiser is beneficial to a degree. The problems for us come in because in order to run a great business, I need to be there more. I am physically worn out and am there as minimally as possible right now, which even on slow days for a few hours of standing, causes a lot of stress and physical pain. It is very difficult on top of three children, homeschool, and my health. My Toby is not able to keep a regular schedule with HP, so we don’t really know when he will or won’t be home to help with the kids so I can go to work. His only day off is Saturday which he tries to enjoy training in Boise. With everything that goes on Sunday – it is not a day off – and I guess that leaves me with no “real” days off to choose from. Even on my days off I get calls from work, have to stress about upcoming funerals, holidays, and I have to be on call to come in and help.
Without the shop, I still have three crazy kids and an extremely dirty house to keep up with. I feel like the best decision for ME is to sell the shop. Toby really wants me to hang on. He wants the shop for our family and our future. I get that, I do, but I am so tired of hanging on. You don’t make a ton of money being self-employed. So, there’s not like this financial money tree I’m hanging onto. I really enjoyed the creative parts of the job and I totally rock at business when I’ve got my game face on. I believe I could apply the same business skills I’ve learned at the shop to any industry and be successful.
The problem is that there is dread where there was once joy. Even if Toby comes in and takes over, I still have a lot of pressure on me to make product and be the back-up. It would also be an extensively long transition period between when we could feasibly not need HP – probably a year or more.
Ultimately, I don’t think the shop is conducive to my goals of health and healing right now. Even though Toby is home 65% of the time, the other 35% that he is in Boise, is very difficult for me. I am embarrassed to admit that. Ashamed. But, it’s true. If you think about something you love, love, love to do and then throw on the aches and pains of a bad flu, you wouldn’t want to do it. Try applying that same concept to things that you don’t even like to do everyday of your life. It makes life suck. I don’t want life to suck anymore.
I suppose I am going to honor my husband and hang on to the shop securely until after the June appointment. Even if I felt better, do I really want to live the stress-filled life that comes with this business? Do I want to have to juggle three kids and their schedules and Toby’s ever-changing HP schedule and mom’s cancer and chemo and employees… do I really want that on top of the shop? I don’t know.
44. That is the number of days that I have been on this restrictive gluten-free, sugar-free, fat-free fiasco of a diet. We’ve (me and Tob) been detoxified and cleansed. We’ve been vitamin’ed up and herbally enhanced. We’ve drunk a lot of water. It’s been good and bad all at once. The whole purpose and intention for this was to feel better. A desperate attempt to change the direction of my health.
I wish I could say so many good things. There are several, actually! I am mentally and emotionally pleased with myself for accomplishing something hard. Cutting out sugar is something I would not normally do with sound mind! I love all the foods that are bad for me. Getting to the point of being thankful for lightly salted vegetables and brown rice – a beautiful meal for millions in the world – was difficult for me. Being thankful for the manna. Will you choose to be thankful, or not?
As far as the effects of the diet on my health; I’m unsure of how this detox and cleanse have impacted my body at this point. There are a few things I’ve definitely noticed:
1. I have zero wart on my thumb. My body was able to fight that off after a year of it being there.
2. I’ve lost like 10 whole pounds! My jeans fit better, I’m leaner and within a handful of pounds to my ideal weight.
3. I’ve completed something I set out to do.
We are sticking with the diet indefinitely. I know, right? Who would do that? It must be doing something, huh? It’s hard to see the good that it could be doing right now. I think I will have to give it long-term approval. I am exhausted. I was tired when I started this diet and I’m just as tired now, if not more. Sleepy fatigue. It is very frustrating. I want to do so much, but I’m just inexplicably tired. I’m still at that place where I’m not sure when to sleep and when to fight it. Lately, sleep has won. I’ve maintained a regular sleep schedule during this diet, and for most of the year so I’m not sure what more to try in this area. There is some medication that my neurologist said I can take for the fatigue. More pills.
My leg pain is steady. I feel like my left knee and ankle are pretty weak these days, on top of the pain from the spasticity. I take Baclofen for this and it definitely helps. However, there is a deeper, wandering aching – almost like a toothache – type of pain that is almost always lurking deep in my legs somewhere. I say “toothache” because it is often ranges like that annoying pain where you know something is wrong with the tooth all the way to needing a dentist right NOW because of the pain you can’t ignore.
In addition to needing help with the pain and fatigue, I have a few other things that I’m just now starting to personally research. I have been studying things like “clonus” and how to differentiate benign familial tremor from tremor caused by disease or damage. The tremor has not lessened. I feel pretty awkward when I notice people noticing it. It’s like wearing a bright red Britney Spears latex jump suit. People notice. My left hand is the back-up plan. I’m not very good at making it my dominant hand now, which I probably should be. It is getting more difficult to write, particularly, signing my name type of stuff. As luck would have it, my left forearm is crapping out on me! I’m not joking! Lefty is the back-up plan and lefty is getting weak. I’m unsure what this means. I have an odd sensation of pressure wrapped around a good portion of my forearm. It “feels” weak. I think the neurologist felt that my right hand was noticeably weaker than the left at my appointment. I think we should pray for lefty and possibly righty. I will not be human if I can’t use my workin’ hands!
Not only will this particular blog serve as super record keeping down the road, it’s also helping me get my thoughts and primary concerns ready for my appointment at the Multiple Sclerosis center of OHSU in Portland. That’s right. I got an appointment! This June. I researched the clinic while waiting for all of my paperwork to be filed. Which is another mystery in and of itself. My information was faxed over to the clinic in November/December. I got an appointment with Dr. River, my neurologist here, in January, so I didn’t pursue my application at OHSU as aggressively as I should have. Meghan, sweet Meghan, reminded me I needed to be brave and after speaking with this angel, I got courage and called the clinic to figure out the status of my junk. I had to get more information from Dr. River sent, a week went by. I was laying around the house feeling bad. Doing nothing. I called again. They need more paperwork. I was totally confused at what other paperwork they could want. Turns out, my chart was mixed up with someone else’s. After a very influential phone call from my sister at the doctor’s office here in town, OHSU called to offer me an appointment that very day. I was so shocked when the lady said she was calling to get me scheduled. I’m like, ‘Wait, what? Like, the doctor is going to see me? OH! MY! STARS!” I felt so redeemed. Thank you, Lord.
The doctor I was randomly paired up with is very knowledgeable in Multiple Sclerosis and Neuroimmunology. She has special interest in dietary influences on neurological disease processes. Um, could I not have found her at the most perfect time? I am totally prepped! 45 days, now, into a variant of the diet she advises for conjunctive MS therapy. I am so prayerful for this appointment.
At the same time, I am fully aware that I cannot rely on this doctor to fix this mess of mine. I know I can’t. I’ve been there before. I think the best strategy for my brains and my heart going into this is this: she is a part of my faith journey, a very intentional act of God. If she helps me, it is with divine guidance and wisdom from Him. I understand that this may be nothing more than a waste of fuel to drive to Portland, she may not even want to actually talk to me when I get there. She may be a jerkface. Regardless of what happens, I will go with the Lord, I will come back with the Lord, I will pray for the Lord’s hand to be in this, to lead me, to help me and to be with my doctor. My hope can only be in Him. I am so much closer to believing He is always with me. Amen.
My family is gone. It’s me and Texas. The dog. Not the state, silly.
They went to visit family and attend the celebration of life for Toby’s late Grandma Betty. At one point we owned guinea pigs and I named them after her two ex-husbands, Gil and Ori. Probably not an appropriate time to mention that.
I’ve been busy with my new found liberation.
Picked up the house.
Vacuumed.
Rug doctored.
Upholstery attachment’ified the couch.
Laundry. Sock basket nearly empty. Victory!
Almost finished listening to a book.
Made a flyer.
Went to work and actually worked. I finished paperwork!
Re-organized, categorized, and listed four seasons of our family’s “Psych Pineapple Hunt of 2014”
Took a bath with mineral salts.
Made some more garbanzo bean breadish cakelike stuff.
Played some mad candy crush.
Baked some of the cutest little mini-cookies I’ve ever seen in my life.
Dishes.
I have yet to finish a few things:
Laundry.
Washing the windows.
Dusting.
Fixing a shelf.
Fixing Q’s dress form.
Repainting the interior doors.
Planning more details to the shop’s spring open house.
Bathroom’s.
Homeskool lesson plans for the next two weeks.
Dinner with mom and sister.
Garden beds.
Getting rid of kids winter clothes and old toys.
I’m burning daylight. I have roughly 2.5 days to get my stuff done. Prolly not going to happen, but I dream big.
Toby has commented that he has noticed a change in me since doing my diet. He’s not sure what it is. Energy or spunk or what. I’ve noticed a change in me, too, but I can’t put a finger on it. Or a thumb. A warty thumb.
The diet and Bible study I’m working on both started within days of each other. I think it’s God using both things to help me. I’ve really detached myself from the shop. More so than my staff would probably like, but the stress is going to ruin me. My threshold is already so low, just because of my health. The excessive stress turns me into someone I don’t like and someone I don’t want to be for 50 more years. I’ve decided I need to figure out how to deal with said stress or proceed with trying to sell the shop. For now, I really want to rebuild my health and give my body the best chance to heal. Being able to rest when I need to rest. Not having to force myself to follow a schedule I can’t be expected to follow right now. There are have been lot of tears over the last several weeks. Good tears.
People have asked how my body has responded to this diet. I, honestly, am not sure how to answer that. I still feel pretty worn out. At this point, I’m doing A LOT and keeping busy. But, I’m exhausted. I take frequent breaks. I try not to nap so I’ll sleep better at night, but when that heavy fog of fatigue lays on you thick and you’re too tired to talk… you get to take a nap then. =)
I have noticed obvious improvements in my digestive tract. My husband and I have, in the past, done a colon cleansing program. I found it YEARS ago online. We have tried to do it every few years since then, but I haven’t been able to do it as frequently as Toby because of my pregnancies. We love this product, Colonix. It will freak you out, it is that good. I started my diet March 2, 2014 with these Acai detox pills. We did ten days of the Acai WITH ten days of no sugar, dairy, caffeine, or gluten. We also did a lot of juicing and ate primarily vegetables, beans, nuts, and whole grains like brown rice. I started taking a multi-vitamin, 1,000mg Vitamin C, and an omega-3 oil supplement at this time. In addition, I have drunk (drank? drunken?) more water in the past three weeks than I have in the whole year.
After the first super strict 10 days, we switched from the Acai detox pills to the Colonix. The Colonix is a 30-day program. It can be more, but I’m just doing 30. Following that, I will go back to the Acai pills as continual maintenance. Toby and I both feel that the “prep” we did in the ten days before starting the colon cleanse made a big difference.
Here I am 21 days into this diet. I am shifting the diet to avoid saturated fats, yeast, sugar, gluten, and dairy. I have also added a few more supplements to my daily cocktail: I am taking a high-potency probiotic, a high dose of Vitamin D3, and a liquid Vitamin B-complex. I have tried to maintain a regular sleep schedule. I am also committed to building my spiritual foundation in Christ. I think all of these things, all of these little changes, are adding up.
I regret that I can’t say, “This diet has changed my life! Do it!” I don’t feel that, yet. But, I’m willing to give it time. I’m willing. I want to keep eating this way. That should say something, because it is not glamorous, or easy, or always tasty. I don’t have a big testimony yet, but I do have a super tiny one.
It’s a wart. Was a wart. This is the grossest blog post I’ve ever written on: colon cleansing and warts. No, not venereal warts. The regular kind. I’ve had one on my thumb. For probably a year. I’ve treated it with stuff, but found ignoring it worked best for me. I’m so gross, huh? Don’t judge me. Please. Every once in awhile, I’d hit it or if it got pushed it would hurt. But, we mostly just did our own things, me in my world and thumb wart in hers. I noticed last week, thumb wart is almost gone. So… in one year my body can’t conquer this little virus. But, in two weeks + of clean eating, detoxing, and supplementing it goes away on it’s own. This is a miracle. I’m so thankful for it. This tells me that my immune system is kicking in. And, even though it may take more time before my body beats up the rest of the bad stuff, I think it’s working. I’ll take what I can get!
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Blooming in Idaho 