multiple sclerosis – Blooming in Idaho

The Thing About Chronic Illness…

March 26, 2018March 26, 2018Blooming in Idaho, Multiple Sclerosis & Chronic HealthLeave a Comment

…is that there isn’t just one thing about chronic illness. You don’t plan for it. You didn’t ask for it. Yet, you are subject to it.

I have certainly played the victim of my circumstances. And, I am super harsh on myself for not being one of those amazing “rise abovers” that go on to win Nobel Peace Prizes with their four disability’s, unstable childhood’s, or breaking of addiction’s coupled with a determinate attitude to persevere. I’m just your average lady, trying to wing it like everyone else.

I am learning. Willing to be taught. Call me a slow learner. Perhaps this is mid-life crisis time? At 38, I’m no spring chicken. I can say, with a bit of confidence, that I am getting a bit smarter. Is that arrogant? I hope it’s not arrogant.

My internal flight or fight is still easily provoked. Due to my childhood, it’s still a little trigger happy, launching much quicker than others, I am assuming. But, now I am able to look past single moments and try to find what is beneficial long-term, instead of what is just, what is right, what is okay in the here and now. It is in the acute lows, feelings of blame, and moments of potential hope that pass me by that the fight or flight emerges.

This last week revealed some abnormal blood work. It was this blood work that launched these old questions brand new. It was this “abnormally normal” blood work that made me fight back fierce tears and realize that there was still a hope inside of me that life could be better. I didn’t order the lab tests, the office called me back due to my last tests being off a few months ago as part of a wellness check-up. This time, still off, the doctor disregarded them with no further investigation as to why. Neutrophils are probably way overrated. She said very few lab tests are actually indicative of something, most just relative and susceptible to clinical interpretation. Only a few, such as Potassium, actually indicate something. So, when you don’t find the standard, you just disregard the value and chalk it up as abnormally normal. Can I live with that? Am I a hypochondriac? Where do I go from here? So many questions, so few tangible answers.

I’ve come to a point where I know that choices must be made about this super long experience of chronic illness of mine. A couple of decisions, actually. I know I am a stubborn human. As a stubborn human, I have been fighting the circumstance of chronic illness for years. Lots of them. About 17. If you count when I first knew that there was somethin’ fishy going on, it was about 19 years ago. That makes me gulp hard. I think of Scooby Doo and the loud “Gulp!” that he would make when he was stuck in a debacle of sorts.

gulp

The thing about my situation that is somewhat unique, is that I lived in this chronic illness wonderland for nearly 14 years without a diagnosis. The first neurologist I went to told me I was crazy and needed a psychiatrist. If that doesn’t knock your socks off, I’m not sure what will. I lacked confidence as it was and to hear this professional, who wasn’t able to find easy answers, disregard me as a nutcase… man, that caused a lot of damage and still causes me to doubt myself.

The difference between now and then is that I have been diagnosed. I have seen one neurologist for about 10 years or so, and though she is nice and kind, whether it be the vagueness of it all or the liability or the lack of courage, she was unable to officially diagnose me with anything. It took a trip to the Mayo Clinic in Arizona to get a diagnosis of Multiple Sclerosis in 2014. Or, 2015. No, it was 2014. Years blurring into years.

The diagnosis wasn’t obvious there, either. Multiple Sclerosis didn’t come until I expressed, quite desperately, that I would rather be in heaven than live the way I was and a super empathetic resident demanded a spinal tap before I left my three day visitation at the clinic. The overbooked lumbar-puncture lady suddenly became available and it was this test that confirmed that I was not crazy. You should know that I had had one of these pokes before and it revealed nothing. This time, though, a few years later, the oligoclonal bands would be too numerous to overlook. Another puncture, in 2016, revealed several more bands.

bands

So, it was official. I was officially diagnosed with Multiple Sclerosis. My Idaho neurologist will say it is ‘atypical’ or ‘chronic.’ Not following the same patterns that the typically unpredictable disease is supposed to trend toward. Sometimes, I even get the feeling that she doubts the diagnosis and I fall into this category of “We are treating you, but we aren’t totally sure what you have.” It does not feel good. But, at least I am getting some treatment.

By treatment, I mean, I get prescriptions to respond to some of my symptom’s. Baclofen is for spasticity and helps with pain I get in my arms, back, abs, hips, and legs. That, in combination with the Ativan, do help my muscles to relax. I have a pretty rad tremor in both hands, but much worse on my right. The Baclofen, which I am now taking 20mg 4x daily, helps to settle this tremor down on most days.

I am unable to keep my head in one position for too long. The rest of me stiffens up, but not as intensely. My neck and back get super sore from straining one way or another, even for short periods (5-15 minutes). An example of this, would be needing to sit straight on toward a speaker, stage, or screen if at church or watching TV. Otherwise, I have to look away a lot, or prop my head on something for support.

My leg pain, which has been my chief complaint for most years, has been helped with the Baclofen, Cymbalta, a Quell tens unit, and alternating Tylenol and ibuprofen throughout the day. All of this still does not completely stop the pain.

My arms and legs both get tired quicker than they used to. I really enjoy walking and try to walk regularly. A few times I have tried to jog and I notice that my ankles respond by being unwilling to bend to absorb the stride when my foot hits the ground. It is both a painful and odd sensation. “Why aren’t you bending, silly ankle?” I am super thankful to be walking. I have experienced a time many years ago of not being able to walk on one leg at all and throughout the years have needed a cane, during super difficult seasons of the disease, to get around. Canes are not cool.

In addition to treating some of my symptoms, I was also prescribed Copaxone injections as my first MS disease modifying drug. It was not bad in the beginning and I took the injections well for over one year. But I slowly developed anticipatory anxiety and huge diversion from the treatment. I was experiencing a large amount of anxiety in my overall daily grind, so I am not sure if it was just the shot, or a phase of my life. It was during this phase that I started the Ativan for the anxiety issues and found it helped with other things. After I struggled for some time with the Copaxone, my doctor prescribed Tecfidera. It is pill form for fighting MS. Like the Copaxone, it would not make me feel better, but would hopefully prohibit the disease from progressing.

I was prescribed the Tecfidera a little less than a year ago. Unfortunately, I was given the full dose at the onset of this pharmaceutical therapy and the thing is, it is super hard on your stomach. I was feeling sick daily and struggled through it for months before tapering off. I had escalated issues outside of MS that made not feeling well for several months super inconvenient. I do want to try this medication again with the appropriate low dose starter package that I did not get before. I should have already called my neurologist and had this corrected, but life has been difficult outside of MS. It is difficult to take something that may or may not slow the disease down, and does not offer any feelings of better’ness now, but actually causes more problems in the present, when you’re already dealing with life and pain and life and more life.

And, that’s the thing with chronic illness, is that there is life beyond it. Life struggles that everyone faces and you’re doing it with a hand and a foot tied behind your back. Which, brings me to the whole point of what I was trying to get at eight paragraphs ago… decisions must be made.

Decisions to accept or to fight. Do I accept that this is some wonky type of MS that my own neurologist doesn’t feel confident in diagnosing, but is very staunch about treating; I have not scheduled an annual exam just because I don’t want to be lectured about the Tecfidera. “Maybe if you took the medication you wouldn’t have more lesions on your brain MRI.” This came from the medical assistant when we updated my medications last year. Those same lesions your doctor wouldn’t call MS in the first place? Are those the lesions we’re talking about? The ones that were there and have been gaining for 14 years before going out of state to get help? Are you talking about those lesions? On top of that, no, I do not want to pay a thousand bucks for another MRI that is abnormally different, but was never enough evidence to help me all these years. I think I may be bitter. Regardless, here I am.

At a point where I know my heart, mind, and spirit need to align to the same purpose. Accept this for what it is, think it is, have been told it is, or to fight for assurance in my diagnosis and the possibility for a better quality of life. Will accepting this bring peace or will fighting produce different results? Is it possible to do both?

As I fervently pray for the right choice to be made clear, my heart reaches out to those in similar situations. If there is one thing I know, I know it sucks to be in a chronic illness whirlwind where life seems to pass you by while you’re just struggling to hang on and find some joy out of this gig.

When I contemplate my choices from a spiritual standpoint, I wonder what might bring the Savior more glory. I wonder if the victory is the faith, the perseverance, the hope I have in Him WITHOUT getting the answers I so desperately seek. Moses did not get to basque in the promised land he strove to get millions of Hebrews to. I may not see healing this side of heaven. Can I still believe in an all-powerful, all-knowing God who chooses not to provide my miracle in this earthly life? Absolutely. Is it hard? Absolutely. The measure of one’s faith is not weighed in the answers they receive, but perhaps, in the solutions that never come and the choice to seek, serve, and love Him, anyways. With that in mind, I suppose perhaps I was led on this journey only to proclaim that I believe God is good even in the storm. Even if my life turns out to be one big blessing of a stormy mess or a messy storm, God is still good.

I will continue to pray for clarity on which direction I should take: surrender in this diagnosis or fight for a solid solution that brings closure to my soul. I am thankful to serve a God who will answer my prayers, provide me with patience not to rush or question His sovereignty, and to feel loved in circumstances that I wouldn’t choose.

With love and hope to those in familiar trials, may you be blessed with endurance and assured with the salvation that only Jesus can bring, Amen.

~Dana

Days that become years.

March 21, 2017March 25, 2017Blooming in Idaho, Multiple Sclerosis & Chronic HealthLeave a Comment

It would seem that just not too long ago, I was every perception of healthy. Vibrant, maybe. Lifelike. Slowly, things just started to shut off. Lower tolerance to stress. To pain. Less fight. Fewer emotions.

With a chronic illness like MS, there are no doubt to be emotional and mental battles, trapped in a body that just does not feel well. On my best day, I have substantial enough pain that I must medicate every couple of hours with both prescription and over the counter meds. The fatigue comes out of nowhere to collapse the canopies over the top of your perfectly planned days. It becomes difficult to schedule. Difficult to see past today.

In February, I had a stomach bug. I do not vomit. I am not a vomiteer by nature. (I totally just made that word up. Nailed it.) Wouldn’t you know, that the this flu would hit me, the owner of a flower shop, on the evening and day of Valentine’s. The thing is, Valentine’s happens once a year. It’s like the super bowl. You have to wait a whole season to go at it again if you’re not one of the two teams playing or one of the devoted fans.

So, I start feeling nauseated the afternoon before the big day of love and, to make it even better, this year, this year only, I make a different plan and decide I can make enough flowers in advance to totally wing NOT having to have another florist come on staff. In theory, and in actuality, it would have worked out perfectly, but I got sick.

Bending over, talking, moving… all created the sense of nausea. I was so exhausted from all the hours I had put in before the holiday. My body ached in places I didn’t realize existed. It was a true test of God’s stamina and endurance in me. I worked until three that day and then had to leave my employee and a big group of family and friends in charge to finish the day. Even though I was so sick, it was such a good day to me (the next day 😉 ). A major core of the people I love most coming together to help me. It felt good.

As I recuperated from Valentine’s, I still struggled emotionally and mentally. I had completed extensive work with my therapist the summer, fall, and some winter before. We worked a lot on creating a world for me where I felt safe. I had some worth and some power. I did put in a lot of time trying to get better from my depression, as much as being a mom, wife, florist, and my budget would allow. Something was still not clicking, however.

Later in February I would discover that I was really thought to have PTSD. I had been told this before, but evidently, it didn’t really register. Silly brain. The therapist explained to my husband that there are certain triggers that spur my already agitated, anxious body into full battle mode. As I sat there listening, I felt like such a freak. Not that she was calling me a freak, but that I really didn’t realize how sick my mind and body were. Suddenly, nothing became real. Are any of my feelings real? Why now? I was defensive, upset, overwhelmed. Couldn’t breathe. I left that appointment early. I felt ashamed and embarrassed. I haven’t been back to therapy.

I needed time and space to evaluate things. To figure out who was safe. It sounds so silly, but it’s true. Nowhere in the world feels safe at times, except being alone.

As days faded into weeks, I purchased a great book on trauma, started doing research on PTSD, and started discussing it with some of the people closest to me. It seems that my case is probably complex-PTSD as it was the duration of my childhood. The trauma occured at critical points in my development and it changed the way my nervous system, my physical and emotional self, my God intended design, would grow and blossom.

Since before my son was born, just over five years ago, I have regressed into a fragment of who I used to be. I can trace it back now and see where PTSD took over Dana. Empty and disconnected. I lost a lot of friendships, could not engage in new relationships and experiences, and have suffered with depression, suicidal thoughts, and more. I don’t have much of an attention span. I can hardly answer the phone at work and dealing with customers feels like a major ordeal. Confrontation at any level immediately sends me into “CODE RED, find safety.” Criticism at any level immediately sends me into “CODE RED, find safety.” Rejection at any level immediately sends me into “CODE RED, find safety.” Betraying my trust in the slightest sends me into “CODE RED, find safety.” What is ‘code red?’ Like, in real life? This is a real question, as if I heard it in a hospital or grocery store, it might have different meaning. To me, I’m just sayin’ CODE RED is like, “Immediate danger! Escape! Run! Flee! Who is safe?” My heart will be pounding and I will experience something similar to panic.

It is hard to digest that this is what you have become: A “Code Red” machine. Always looking for signs of new pain.

In the meantime, my neurologist has consented that she is treating me for Primary Progressive Multiple Sclerosis (PPMS), rather than Relapsing Remitting. There is a new drug selling in Europe, the first drug targeted at PPMS, that has just been approved by the States. It is still in trial mode, but is expected to be a viable option soon. It will not fix what damage has been done, but will delay progression. I can’t help but wonder how the emotional deficits in my life are not to blame for the physical damage that has been done. Autoimmune disease. My body physically attacking itself. I can’t fix the damage of one while ignoring the other. So much damage.

I hate damage. I’m at a juncture of what to do with this damage. Some of it is beyond me to heal. Like, without the mighty hand of a valiant God, I will not get through this. Where I go from here and how to get there, God please lead me. Lord, grant me comfort, peace, healing of body and mind and spirit. Rejuvenate my broken heart, Lord. Consume my thoughts with you so that I may not destroy the temple you have created. May I not be held captive to fear. May God know my heart. In Jesus name, Amen.

Pain

May 26, 2016May 26, 2016Blooming in Idaho, Multiple Sclerosis & Chronic HealthLeave a Comment

There is something deep and dark and sad within me. Something that words, man, there aren’t even words to pray. I start praying, but the words are empty. They don’t mean much. Even though I went through this amazing “miracle” cancer procedure with my mama and everything seems like it’s going to be okay, there are still so many hurts in my heart and the presence of God is not felt within me.

I made a hard choice at the flower shop this year and hard choices mean hard roads. It was a difficult journey coming and going and leaving the shop during one of the most prosperous weeks the shop will see this year so that I could be with my mom during her surgery and recovery. Without a full-time florist, how do you flower shop, right? During Mother’s Day week. A group of awesome angels and Toby geared up to rescue me and I tried, through the miles, to give them direction as much as I also tried to let go.

The experience at UCSD wasn’t just about my mom. There was this inevitable “break” that would happen at the end of all of it. Me and her and Oscar’s ceviche and the beach for a few weeks of recovery time. The biggest break I’ve gotten since my oldest was born 12 years ago. A break I fought, but a break I realized I needed. And, just as I succumb to it, it’s scooped away into the emptiness it came from. And the month turns into just days and I come back late to work early and hard and I’m left feeling well undeserving of rest and quiet and finances and goodness.

That’s the thing with me. Always unworthy. I can work hard and get all this seemingly “extra” money, but there is always medical debt. There is always a prescription. You get one bill paid off and turn around to find eight more. Lesions scattered across my brain MRI, new lesions, at least five, and I get the call from my neurologist’ assistant, “Everything on your MRI was normal.” This is not normal. The radiologist even notes that this is an abnormal presentation of Multiple Sclerosis. At what point will I really get help? And how much will that cost? I’ve invested at least one college education into my health and have no long-term help. There is no light at the end of the tunnel except that of heaven.

The pain is everyday. Sometimes a leg, sometimes an arm, shoulder, neck. This “Stiff Person Syndrome” thing, that I have positive blood tests for, that nobody will treat me for, is seemingly progressing. Spasms, cramps, inability to walk far… no escape. The only thing that helps it is rest and sleep and there are not enough hours in the day to sleep it off. Sleep I often wish I won’t wake up from.

I went through this school of hard knocks with ministry, hoping that somehow, being devoted to Him and His word would somehow benefit the rest of my life… it doesn’t work that way. Just because you serve, doesn’t mean He offers you protection from the pain. Just because you love Him, doesn’t mean He will make it easier. I laughed at scripture, really laughed, that said He was with me holding my right hand. He is not with me right now. I often wonder what I’ve done to earn this life and what I need to do to get Him to help me. I am at a loss. I can’t even believe His promises because I don’t want to be hurt by His abandonment anymore. I know I’m not good enough, let’s just, both, settle on that so I can stop trying to love you and you can stop rejecting me, ok?

I cried on my way to church the other day. A faith choice to go, my feelings telling me I’m going to continue to get hurt chasing after this Jesus, especially here. The church, my once beloved church, long since feeling like home to me. A hard reality that I’ve been working on since last October and beyond. A church, ironically, where my husband is now the associate pastor.

On the day when he serves communion, his first time being approved to do so, was the first time I didn’t take it. The first time since becoming a Christian eight years ago that I didn’t celebrate in Christ’s death by consuming the bread and juice, a remembrance of Him. Wouldn’t you know, that I’m in this empty pew, Toby up front to pray over the sacrament, and sure enough the pastor of the church comes to sit by me. Then, the tray of bread and juice is served to me by two of my loves, my Brucey and Ster, and I have to audibly tell them I’m not partaking. Then, the pastor’s wife comes to sit by me after she is done helping to distribute communion to the congregation. The one day I don’t take the elements because I know my heart is long from being right with God, I have my husband officiating, my pastor and his wife sitting on each side of me, and I can’t even just pass the tray, I have to verbally and shamefully turn it down. Of course it happened that way.

I probably shouldn’t, but I feel super embarrassed. Super stupid that the two most meaningful people in the church sat at my right and left while I sat empty handed during one of the most intimate rituals one can partake in for our God. It was humbling and hard. My lips didn’t move in worship that morning. I sat, eyes mostly closed, clenching onto tears.

Sadly, this is most of my days. Waiting for the pain, always on the defense. Facebook became one of those places. Not only because people, good “Christian” people bring me down, but because I gave up on sharing the story, sharing His glory, when I realized that I was only going to continue getting attacked -spiritually, physically, emotionally. Unable to continue spouting out how great things are, when deep down I didn’t feel loved and protected and hope for the future. His promises empty.

I am as weak and poor spiritually than I have ever been, even pre-Jesus. We have enough money to get by, but there isn’t a future of prosperity for us, despite how hard we will have to work. There is not a doctor in Idaho that can help me and I don’t know who to go to and I’m not wasting anymore of my time or money pursuing empty attempts at getting help. The physical pain is my only constant.

I am at this point that I have to accept that this is life. I was born to suffer and endure emotional, physical, and financial pain. I’m at this breaking point where I need to decide if it’s worth it. Where do I go from here? There is nowhere to run. There is no God holding my right hand guiding me to a place where I can be favored like my mom and Toby. These two. If I didn’t have them and some of God’s goodness that I was able to breathe in when I’m around them, I probably wouldn’t have any favor at all. I am both thankful and hurt that I can’t be loved the way they are. The way things just happen and align for them always. Not much effort on their behalf. And, I’m here drowning… it doesn’t take long before you realize that you’re the one that doesn’t fit into this Kingdom. And it’s so hard fighting it. And, I’m tired. The deep, dark sadness inside of me festers bigger and my worth has wore down to just shreds that once were.

I’m sorry that I am not a source of hope and joy and spiritual enlightenment today or always. Sometimes, like now, it’s just too hard to fake it anymore. Pain too close to the surface. Just, too much pain…

It’s Just Me, Again

March 13, 2016Blooming in Idaho3 Comments

I let myself be brave Saturday.

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.

12696984_10207363929768068_3939255430171054301_o — 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.

Oh yeah! I am a fighter!

December 2, 2015January 3, 2016Blooming in Idaho2 Comments

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.

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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.

My One Defense

April 15, 2014Blooming in Idaho, Jesus Freak1 Comment

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.

T-7

January 22, 2014January 22, 2014Blooming in Idaho1 Comment

Who has two beautiful gerbera daisies and gets to see a neurologist next week?

This girl!

I am relieved and excited! When I think about it too much I get anxious. Here’s the thing.

I cannot put all my stock in this neurologist. I did that with the Mayo Clinic and it was really defeating. I have to set my mind on Jesus and thank him for the progress that will be made at the doctor next week, whatever that is. I pray that no matter what I will be joyful, continue praying and have a thankful heart. I cannot come up with the number of different outcomes that next Tuesday might bring. Definitely MS and still on a progressive slope? A different, treatable form of MS? Not MS at all??? Do I still have to have another spinal tap? Are there really lesions on the left side of my brain now? Is that what has caused the dysphagia? How severely can this problem progress in MS? What can I expect the tremor to do over the next five years? Can we do anything for the pain? Am I crazy? I almost wish she would tell me I really am actually just crazy and this is a hallucination.

My grandma was 36 when she lost the use of her legs because of her severe and progressive MS. Her name was Franka. I didn’t know her as a granddaughter ought to know a grandmother. I knew her as handicapped, drooling, in a wheelchair, confused. She was on her horse and my Papa Roy told her to get off and get the gate closed. He saw the cattle getting out and came over to where she was and she couldn’t move her legs to get off of her horse.

This last month I had my 34th birthday. That morning I chatted with a friend who happens to have the same birthday as me. His mom had MS and she died when he was 15. It’s hard not to be scared of my disease progressing to the state of being paralyzed. On my 23rd birthday I went to a neurologist because the tremor, muscle fatigue, and pain had all started the November before. That was the day that he told me that we were first doing a scan for MS. My scan came out with lesions on it, smaller than would be expected, and the week after that neurologist told me that I was a mental patient. He said there was nothing wrong with me and that Toby needed to get me to a psychiatrist IMMEDIATELY. There was screaming and chaos and people gawking. Straight out of a movie. Crazy.

Two weeks later, I wake up one day and I fell multiple times trying to stand up out of bed. I didn’t understand what was going on and I realized I couldn’t bear any weight on my right leg. It’s not that it was painful or there was something damaged, I just couldn’t walk on it. I finally figured out how much of a stride I could take and though it wasn’t much, I was not going to waste it. I called Toby and told him what was going on. Then, I hobbled down our apartment steps and went walking. I walked and walked around the busy Boise city blocks surrounding our apartment. Toby came home from lunch and tracked me down. From the way I was walking he knew I needed assistance. We went and bought a cane. I had to use it for several weeks and then tapered down to months until I finally was strong again.

Sometimes I wonder if I was actually spared. I really think that if I had laid there in my bed, crying, and grieving I’d still be in bed. Progressive MS typically starts in older patients and it usually does involve walking difficulties as the onset of the disease. I wonder, if my choice to get up and walk was honored by God before I even knew Him.

There are so many outcomes of my doctor’s appointment. So many possibilities. I’m afraid to hope for comfort. It may be in God’s will that I am meant to suffer. We may not be able to slow down or stop this disease from happening. I am prayerful that whatever the doctor tells me, if she tells me I’m crazy, tells me she can’t do anything, can or cannot give me medication… whatever it is… let my hope and my faith and my strength be in my Master and Healer, Christ Jesus. Please pray for me.