Thursday, June 4, 2015

The Strength of a Thousand Prayers

The chemo journey. This is a testimony of the power of prayer, and the power of Grace, so if you have any problems with that feel free to stop reading, but if you have even a "mustard seed" size belief in God, then you might just want to keep on reading...or if you love me at all! jk...or are a good person...jk....I'm really kidding. Shutting up now, but not...ok, whatever.

It all began with the last post about my MS episode in November. That episode was evidence that once again my MS was "breaking through the barrier" of another MS medication. Because the last 2 were considered more "aggressive" maintenance meds, my next step was going to need to be even more so. So....Doctor G (that's my neurologist) sat us down and gave us some of the options. The two that felt like the best were the most aggressive, the butt kickers, the kill shots, the big deal options. If you know me at all, you know that I'm a "butt kicker" kind of gal, so obviously the idea of that appealed to me! I mean, come on, a chance for me to beat the crap of this disease. I'll take it! 

So, the decision process began. Which means I prayed and I researched my options. A lot. And my husband prayed, and then I went to the Temple. What better place to get an answer to a prayer, and not just to prayer, but to go to the Lord with two options, and ask for help in choosing the right path for you? The answer is, there isn't a better place. And this holy place of God provided the peace and answers that I was seeking! I took my two choices (I'm going to leave out the names of the treatments for objectional purposes. If anyone reads this and has to make a decision I wouldn't want my choice to be a deterrent from the one I didn't choose) and I asked the Lord specifically, "is this the choice that is right for me?", and then I focused on the answer yes. I felt nothing, so I focused on the answer no, and I felt a buzzing feeling throughout my body. I felt the answer no. So I moved on to the next option (which deep down was the one LeRoy and I both felt the most strongly about), and I asked the Lord, "is this the right choice for me?" and I focused on the answer yes. I cannot describe the overwhelming feelings of peace, joy, energy, love, approval, every positive feeling you can feel, that ran through my heart and my mind. And just to be thorough I focused on the answer no. I felt nothing, so I went back to yes, and all of the confirming feelings were there. I knew without doubt which course was right for me. (for all of my girls in YW, you've heard this story, no, this testimony, but I will tell it again and again! So get used to it!) I walked out of the House of the Lord with a confidence and a resolve that I knew what to do next. Not only that, but I knew that my Father in heaven was guiding me to the treatment that would answer the last 3 years worth of prayer for healing. Now I just needed to tell Dr. G. 

This is a summary of a woven pattern that has taken years to put together. I don't know if I have the stamina to blog the years of being placed in the right places, around the right people, at the right times, in order to be where I am right now. I've talked about it very briefly on FB, but the treatment I felt was right is called HiCy (high dose cyclophosphimide, or high intensity Cytoxan), otherwise known as chemo for MS. The same concept they use for cancer cells applies to MS, just all in one shot because I am not dying. They use chemo to attack the rapidly growing cells, because if you kill the rapidly growing cells that cancer feeds off of, then you can put it in remission. It's a bit the same for MS, only it's killing the immune system that attacks the Central Nervous System (your brain and your spine) (p.p.s. I'm obviously not a doctor, so this is like SO dumbed down! Don't judge) and then you "re-boot" your immune system to get rid of the glitch. It involves 4 treatments of this high intensity Cytoxan in the hospital, and then being sent home to recoup. They inject you with a drug called Neulasta to help your bone marrow kick into high gear when you hit rock bottom. This is where I'm at on this journey. I just received my Neulasta shot yesterday, and I'm waiting on rock bottom. This means I have like no immunity as of this weekend, but this should only last a couple days and then my immune system will start to re-build....without 
MS!! 

It's a bit like trying to put all of the Harry Potter books into a 2 hour movie, but this is my chronicle, so take it or leave it! 
-I have learned so much about getting answers when you need them: search out your options, and then ask specifically. "But, behold, I say unto you, that you must study it out in your mind; then you must ask me if it be right, and if it is right I will cause that your bosom shall burn within you; therefore, you shall feel that it is right."-D&C 9:8 
-I've learned about the power of prayers: as I was in the hospital getting the chemo treatments, the last 2 were pretty rough. You can feel the poison in your body, killing you in sense. It doesn't feel great. And on the morning I was supposed to be released I woke up SO sick! It was uncontrollable, and relentless. I started to think things like, "what have you done, Bente! You can't undo this!" and then I just started asking for strength, asking for Grace, because I was NOT strong enough for this. And then the thought came to my mind of all of the people who were and have been praying for me, and I slowly (and I mean way slower than I wanted) started to feel like I was being lifted out of hopelessness and physical despair. I felt the power of prayer. Of every prayer from every person who has offered one on my behalf. I felt the Grace and power of God. And I got up at 7am (after 24hrs of HELL) and started packing my bags and moving and eating a little with the determination that I was out of there! And I was. 
-I've learned about the power of Divine Interventions: you know when there are just too many "coincidences" to not be the hand of God. Like being placed in Little Elm 6 mos before being diagnosed, right where my amazing friends from back in the day were living and working at UTSW (and even in neurology), where one of the top MS clinics/doctors are working on a cure, and even the lack of response to medications and all the frustrations that have come with that and the progressions of the disease. ALL of these things were happening for a reason, "and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my [daughter], that all these things shall give thee experience, and shall be for thy good"-D&C 122:7 - my being a viable candidate for this treatment.

And now for a to be continued conclusion ;-) ....
I'm not done, obviously. I am being strengthened daily. I feel SO loved! And at the risk of offending or being considered lame, I offer a blanket THANK YOU SO MUCH! to everyone who has been helping my family, sending meals, PRAYING, sending texts that make me laugh. out. loud. or even just smile, I cannot express or write enough thank you cards for all of the support that we have felt! So please accept my overflowing gratitude for the shortest thought of positivity to the sacrifice of your time and efforts to take care of my kids or my husband. Please don't be offended if you don't get a thank you card, or a visit from me. I know what you are doing, and believe me when I tell you that I am so thankful for you! We're not out of the woods yet, so be patient with us, and don't stop loving me!! cuz I love you all right back! Sincerely and wholeheartedly!

The (almost) end, of this post.... ;-) until the next novel.... ok for real.... peace out!

Saturday, November 15, 2014

Refinement

Refinement, according to Miriam-Webster.com:
: the act or process of removing unwanted substances from something : the act or process of making something pure
: the act or process of improving something
: an improved version of something

Let me break this down: October 24th- Church Halloween Trunk or Treat- It was awesome. We went as "road kill" which means that LeRoy put paint on the truck's tires and ran over some old clothes and I painted tire tracks on faces and aerosol sprayed my hair whilst laying down on my bathroom floor. I threw together some chili. We won most creative costume, and I actually won best overall chili (but not most popular, I think the judges took pity on my chili). It was awesome.
October 31- Halloween- It was cold, but awesome. We set up a cornhole, which LeRoy built out of wood like with nails and stuff, and made the kids do tricks for their treats (in the hole = 3 pieces, on the board = 2 pieces, and totally missed = 1 piece). It was a total hit, the kids loved it. I stayed and LeRoy took the kids around the neighborhood. I dressed up as a That 70's Show kind of hippie and got hit on by some teen-age boys....awkward. It was freezing cold, but super fun.
Sunday Nov. 2nd - Feel impressed at church to share my thoughts and testimony about refinement.  
Tuesday Nov.4 - 2am wake up with severe can't-take-a-breath chest pains, sit up to try to get a handle on what's going on and my head is spinning so fast I can't see straight, try to get up to go throw up and my legs are lead weights. I wake LeRoy and have to call an ambulance to get me to the hospital cuz I think I  might be having a stroke or a heart attack. Doc says it's an MS exacerbation, and the MRI says I have a new lesion in my brain (that makes me in the more than 10 range). 3 days of hospital and IV steroids. Tuesday I couldn't walk and sounded like a slurring drunkard. Friday I shuffled out of the hospital with a cane (cuz I was too proud to be a 33 year old road-kill hippie with a walker). Saturday I caved and starting using the walker because my legs couldn't lift themselves.
Sunday- I just had to go to church (because sitting alone in a bed for days just doesn't help a person recover) and show off my sweet new wheels and my walker shuffle, all the while feeling so strongly that I needed to pull it together to go Monday morning to Keaton's 5th Grade science camp. The Hymn during our Sacrament Meeting was As Now We Take the Sacrament, and there is this line that sticks out to me every time, "And silently we pray For courage to accept thy will, To listen and obey."- I was struck by this line shortly after my diagnosis when I was finally coming to terms with the fact that this disease was mine. I couldn't deny or ignore it. I couldn't make it go away or even control what happens because of it. I had to have the courage to accept the fact that for whatever reason, my Heavenly Father made a plan for Bente that includes dealing with Multiple Sclerosis. Sunday night- I'm sobbing on the floor in my bedroom trying to reconcile the intense feeling that I need to go to the camp, with my overwhelming exhaustion and inability to walk and function the way I should. I felt like me going was part of God's plan for me. Keaton's teachers and school did so much to make it possible for us to go, and I felt like it was necessary. I decided right before I went to sleep that I would have courage, and I would listen to Holy Ghost who was telling me I needed to this, and that I would trust that Heavenly Father would make me able.
Monday Nov. 10- Camp Jolt- I pack up my two bags, stack them on my walker with my cane and head into the school cafeteria to check in as a chaperone. We get up to the camp and I start trying to get my sweet walker to be an off-road vehicle on rocky dirt paths. My shuffle and my walker turn out to be enemies with camp life, not to mention that I'm quite sure I was scaring the entire forest with all the noise of a violently shaking walker (which I actually had to tighten the screws on because it was rattling apart). Humility: : the quality or state of not thinking you are better than other people (Miriam-Webster.com) Humiliation: : to cause (a person) a painful loss of pride, self-respect, or dignity; mortify (dictionary.reference.com). These are the definitions for how it felt. But I chinned-up the situation and went with the cane so that I could better navigate the world of science camp. My legs still felt awkward and heavy, and by the end of the first day I wanted to crawl in a hole, but I did it. Finally me and my totally-awesom-chaperone-roomy get 9 loud, crazy, I-totally-love-them, 5th grade girls to go to bed. I'm reading my scriptures, and I come across this, "And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs. And now it came to pass that the burdens which were laid upon Alma nad his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord" - Mosiah 24:14-15. So, I say my prayers and ask that I will be able to handle the rest of this crazy adventure.... and then I hear crying. One of my girls was sad to be away from home, and as soon as I get her settled back in bed and I doze off, I hear puking. She did not fair well that night and my totally-awesome-chaperone-roomy (Debra) and I tried everything, but by morning she just needed to head home. 
Tuesday Nov. 11 - The Hike to Monkey Bridge day- This was a 4 mile hike. The teachers had a plan to make it so that I could sit this one out, but this is me we're talking about, so of course I'm going. I wake up and get out of bed and my legs feel almost completely under my control! So I leave the cane on the end of the bed and walk out of the cabin ready to tackle this thing, and I walk out to my son waiting for me outside my cabin. The first thing out of his mouth is, "Mom, you don't have your walking without your cane!" and I said that I felt like I could do it, and he said, "My prayers worked." And I know that I have done the right thing and that I have the best kids on the planet and that being a Mom is awesome and that having MS is a bump in the road that I can shuffle over, walker on top of, and flatten. 
The rest of this story is that I hobbled all over that camp and grew to love a bunch of 5th grade girls (Machenzie, Hallie, Kenedy, Aileen, Melissa, Kayla Gar, Kayla Ger, and Julianne) and got to show my son that I love him, that prayers are listened to and answered, that I can do anything with the Grace of a loving God, and that I am flippin stronger than I ever thought I could be. 
I am being refined by MS. It is the process by which I am being made pure, the process that is removing the unwanted substances (like my pride, my weakness, my lack of faith/trust). It is improving me by teaching me to see how much Heavenly Father helps me. It is teaching me that there is an enabling power that comes from a Savior who chose to suffer all of this for me, so that He would know how to help me. It is teaching me to go through trials "cheerfully and with patience", and to submit to the will and plan of God with trust that He will help me to do what is asked, "I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them"- 1Nephi 3:7. 
This last 2 weeks has felt like months. I am still struggling with the residual symptoms of having the wires in my brain being eaten away at, but I have seen and felt a miraculous hand in all of this. I know that this is my Heavenly Father, and that He loves me. I also know that I am putting everything I have, all of my might, mind, and strength, into following His teachings. It is not an easy path, and like everyone in this life who has trials and problems, it down-right sucks sometimes, but seeing and feeling the way He weaves my plan, and puts people in my life who I need, and inspires me to do what's best for me (like go to intense science camp physical therapy) even when I think I can't, but then it turns out that it probably got me walking faster than I ever would have on my own. It is amazing. It is refining. I am blessed. My family is being blessed. And I am so thankful. 
That's all folks. I told you I wouldn't be great at this (hence the weeks of radio silence), but onward we go. Happy Thanksgiving. Look for what is refining you, and be thankful.

Thursday, September 25, 2014

Not-Really-Rebellious Rebellions

So, I have given this a lot of thought, and have come to terms with the fact that I am fundamentally....you have to believe it because it will be on the internet now..... a rule follower. GASP! sCrEamS of shock! BUT....(I like dots)... I also thrive on what I affectionately think of as the "not-really-rebellious" rebellions. You know, like refusing to squeeze the toothpaste tube from the end because in the grand scheme of life choices, who the fresh cares. Or, "No I will not matchy match my clothes, or socks, or sometimes earrings, or the curtains in my house." (or anything, even if my husband says I look like a pirate) Or, "Why yes I did just make that word/phrase up!" I think this is my greatest guilty pleasure, and I start looking for these "not-really-rebellious" rebellions: anything that doesn't really affect anyone else. "It's not a big deal" (until you find out that it might be a big deal, and then people think that you are for realz rebellious, but that's just because they don't really know you)(climbing water towers? but when I learned it was super illegal I stopped trying)).
My latest "not really" is my (secret) running. (I apologize for anyone who was in my lesson on Sunday) It is true that I was an avid runner before MS, and it is also true that my body does not like for me to run anymore. It completely drains me, and it might, maybe, have been the cause in the past year for some MS flare-ups. At the risk of now holding myself accountable for my, admittedly at times, not-so-smart "not-really"s, I confess that when I have gone for my morning walks since school started, I am really running. Really it's like a jog, or even a trot. In my defense, it has always been the prime part of my day for hearing and speaking to my heavenly Father.
So, yesterday as I was on my "walk" I was thinking through this aspect of my personality in relation to the lesson I taught in church on Sunday. I like to bring psychology into my lessons 1. because I've had to read so much about it over the last 3 years, and 2. because through this studying I have come to understand that God created this part of us, and it was created to be a gift. Human psychology (how and why we act, think, say, and feel the way we do) is our gift to choose and decide who we want to be, what we want to believe, and with that belief decide what we will do. A big part of the lesson was about what happens when a person is addicted to something: mostly in reference to different forms of pornography, but also including food, drugs, alcohol, etc... (Psychology breakdown, parts of the brain: Control, Rewards, Drive, Memory) I mentioned that we can technically get addicted to anything that signals the rewards section of the brain enough that it will start looping to the memory and motivation sections, until the control part of the brain is taken out of the loop. This is an addiction; when the control has been taken out of the loop, and there is only a memory of the feeling of reward (or pleasure) and the motivation to keep that going. No control. It physically changes how the brain functions. This is why heavenly Father wants us to control the things we do in our lives. It is the purpose for commandments and rules and guidelines and all those things He has asked us to do, or not do.
So, I'm secretly running, and asking myself, "can you get addicted to good things?" and I think the answer is, no. If it is good (and good for you), then there will be control over doing it. The decision to not do it would never be difficult because it would be controlled.
Conclusion: I should pick a different physical activity because my body tells me time and again that this is too much. If I feel like I "have to" run, like I "can't, not" run, then the control is being left out of the loop. And my "not-really-rebellious" (secret) running is really just rebellion. GASP!
I don't "have to" squeeze the toothpaste in the middle, I just want to cuz I'm lazy!

Monday, September 22, 2014

This is like driving with a blind fold on!


Well, here goes….. So in an effort to save my sanity, and actually give myself a chance with this “blogging” thing, I am going to TRY not to re-cap my whole life story in one post. Here we go…
Since we moved to Texas 2 years ago, our lives individually and as a family have been completely altered (for the harder,but better). I was diagnosed with Multiple Sclerosis over New Years Eve of 2012/2013. I don’t just want to blog about that, but it is becoming one of those defining events of life that cannot be ignored or compartmentalized into anything but a very significant, and constant, part of my life. It affects my family, my daily experiences, and my view on what is important or worth the effort that I have to put into everything now. I am a wife of an amazing husband, and a mother of 3 incredible kids, so this MS business reaches far beyond just my daily struggles with symptoms. Sometimes I think about what my kids will say about their childhoods when they get to be my age, “My Mom always felt bad”, or “Mom was sick all the time, so we didn’t get to do a lot of the stuff we wanted”. I try not to let my mind go there, but I’m a Momma, so it does. Although I think we are mostly done with the “adjusting” phase of the diagnosis, I feel like the whole process has been very similar to grieving the death of someone who was close to you. My Dad died when I was 4, and I remember how unsure and chaotic it felt in the couple of years after because we had to figure out our places in the family without him there. I watched my Mom re-shape herself into a new version of what she had to, and needed to become. She could not stay who she was because the circumstances simply would not allow it. That’s how I have felt, and I have seen my family going through this same adjustment. It’s not easy. I grieve the Bente I know I used to be. I grieve every time I know in my soul that I can’t handle doing something that I want to, or would have been able to do in the past. I grieve when in my rebellious moments of, “I can do what I want! I feel fine! I’ll be fine!”, and then I pay for it with new symptoms that just make life that much harder. Some days I just grieve. Full on pity party, woe is me, ball baby my day away, and give up into a book. That was the first 6 months, and then the next 6 got better, and the next, and now I feel like “You got this”.
So, we turned it into a joke. “No, it’s OK, I have MS” can be used for EVERYTHING! (I’m going to make T-shirts) “Honey, why are you dancing with the mop and singing at the top of your lungs with your head-phones on?” “No, it’s OK, I have MS!”, “Mom, you’re jokes aren’t very funny” “No, it’s OK, I have MS”. It works for when it actually has to do with MS or it can be used as a go-to, blanket response, unless you don’t have it, and then it’s kind of wrong. Like don’t do that.
When I got the diagnosis my doctor explained it like this (I’m totally paraphrasing(benteversion)): Back in Egyptian times the people used cats in the home to keep out pests, but over the years they became more domesticated, and homes less likely to have the same type of “pest” problems. As homes started filling with more modern things like electronics, and cats became more pet than pest control, they started to get confused, and the things in the home (wires, shoe strings, curtains, feet) started to look like targets. So, the cats started to turn on non-pests; essentially attacking the home instead of protecting it. That’s MS. The immune system turns into (what we affectionately refer to as) “crazy cats” and starts attacking the Central Nervous System instead of just attacking the germs and pests. If a cat chewed on a wire, the rubber coating would wear away and expose the wire, which causes the electrical current to be disrupted. When my immune system turns on itself, it starts eating the myelin coating of my nerves, thus disrupting signals and causing symptoms: pain, problems with my speech, walking, breathing, memory recall, muscle weakness, numbness and tingling, and fatigue, holy moly I’ve never been so tired in all my life! My crazy cats! Sometimes my kids call me a crazy cat lady!
So, this is a little of the background, since it will most definitely be referenced in future posts. I am a sassy, fun-loving, at times hyper and completely immature, try-to-be funny, think I’m funny, active as I can be, sarcastic, yoga stretching in the park, quirky little Momma. I like to have fun, so this is definitely a more serious post than will be normal, as I enjoy telling stories that make people smile! I’m also super new to this…..please don’t be rude. If you don’t like it don’t read it.

Bente- that's ben-tuh.


My name is Danish, but I live in the U.S. of A., so that means that no one ever gets my name right! I had a theater teacher in high school, who after hearing me pronounce my name, said, “So, you’re bent-er than most!” It was pretty funny, but she wasn’t the last person to say that so that’s why it’s the name of the blog. 
Growing up I used to wish my name was something glamorous like “Victoria”, and as an adult I seriously consider going by another name if only in public places, and especially at doctor’s offices, and my kids’ schools, and any first-time meetings, and definitely on emails to people I don’t know well. Hence the phonetic pronunciation guide version (which BTW gets written on those “Hi, My Name Is (Bente – ben-tuh)” name-tags) 
But, alas, Bente is my name. It suits me. Fits me like a nice worn-in pair of comfy slip-on shoes (the go-to ones you use for car pool and a quick run to the store, or to go out to the mail box). So I can’t bring myself to change it, or even pretend that I’m anything other than just Bente. I am a Wife and Mom and a Mormon and I have MS. This is my attempt at “that thing called…”… blogging. You get points if you catch my movie quotes!