Tuesday's tornado and tumor thoughts...

Warning! As you continue to choose to read this post...you might endure the whipping, bouncing, and thrashing whips of the storm in my head; proceed with caution.

We're blooming into spring way early this year. I had the windows open in February and in shorts by the end of the first week of March. Crazy! What's summer going to look like here in Kansas? We're in need of a good soaking rain, and as I look out my kitchen window at the gloomy weather that can cause much despair on the emotional well being of some...I for a moment am caught up in a tornado of thoughts. Why can't I be one of those that have it all together?

The trigger to this thought comes from physically facing the overwhelming stacks of papers, reports, bills, insurance EOB's, stuff to file, stuff to throw away, envelopes that haven't been opened in weeks (if I don't open it...I don't owe it, right?). The mail comes and I push it aside awaiting the day to get organized and get it together. I already know what is in the envelopes and I know I can't pay the bill, or get focused, or seem to find enough time to meet the demands of the ever increasing papers to fill out for someone, some service, some requirement that is in urgent need. I filled the trashcan as I know I need to shred those documents, and I look outside just for a moment to catch the glimpse of what we need...Kansas is in need of rain...and so it will come. The squirrels are running along the fence line playing as if they have no cause of any worry. The trees are blooming without a care in the world, just doing what it does. The birds are singing as they swoop down to find food in my yard...and I'm wondering where the food may come from for the next week until payday. Does anyone else struggle? Is it really that I'm so dysfunctional and oblivious to what else I should be doing to make things balanced in life?

On top of all that, my heart is torn from what Neurofibromatosis can do. If you've never heard of such a word, that's understandable even with much awareness; it's still pretty unknown within communities. When it's a child though it just doesn't seem fair and that part I thought I couldn't control. Maybe I still can't control the outcome, but you bet your sweet tarts I'm going to do everything in my power to drive this monster another direction to the best of my ability. In the past always looking for the next pill or medical advice to help; we're now driving away. We've done 8 years of meds...we are heading for nutrition and supplement city. We are alkalizing our bodies, filling them with oxygen and decreasing the chances of feeding the tumors more of what they want. We've removed all sugar as stated in other blogs and found where the deficiencies are. What if, just what if...the body heals itself with the balance of good organic whole foods, water, exercise, and necessary supplements? Just what if? What if we are feeding the monster with the processed food, gmo's, medications, etc? I can't take that chance anymore.

I've only lived a few years of my life at a place of serenity, joyful balance and without need. I don't work right now so why don't I have time, make time, prioritize such issues better than I do? There's something more to this chaos and I'm wondering if I'm alone? Some would immediately say...well, get a job. Yeah, okay that would bring in some income but it would also take most of it to buy another vehicle to drive (as we only have one), the gas, insurance, maintenance for such a vehicle. I'd lose the time at home with doing laundry, dishes and not stressing over the days off to do these things; which take time away from what matters to me most...my family time. I don't get joy from the mudane thought of repetitive work with no real purpose to my being. So, by re-reading that last sentence I sense I've not found my "place" in the world. But that's just an excuse too tho very true, I don't stay on top of the stuff at home as I should. It's in these moments of thoughts where I can drown in self misery. It becomes a worldwind of self pity, shame, guilt, and well I'm just not who I want to be.

I am constantly thinking about getting back to work; that's what every one thinks and most do. If I thought it would reduce my debt, give me some soul satisfaction, and I could complete work and home...I'd do it in a minute. I can't though, not right now at least...I don't know how to make that happen. It's quite embarrassing to write such vulnerability and transparencies down for the world to access, but I somehow don't think everybody really does have it together. I don't think everyone does have the financial freedom without stress of robbing Peter to pay Paul or have credit cards debt out the whazoo. Have you ever had your utilities shut off? Have you ever had to file bankruptcy? Have you ever been evicted from a home or went through foreclosure? Have you ever had a medical diagnosis that took more than you're capable of earning even after insurance? Are you actually doing everything you know to do and it still isn't working out?

How I make it though is only because of a husband that works his ass off! He cares for his family and is a provider for sure. He wants me to do whatever makes me happy, and with that he assures me staying home is just fine with him. Now, granted we all have wants but we personally have found out that there is serenity and security in having just our needs met. I keep going back to what am I doing wrong? Well, first off...not going to the city to ask for an extension before the due date gets your water turned off. So, who's to blame there...no one but me. Now with that said, I had a reminder on my phone to do such but because I was out and about busy I dismissed it and then forgot. Ugh! How long can a husband continue to deal with a wife who does such things? Does he get frustrated because if he does; he never says anything to me about it. He always says, it'll be ok. Is he in denial too? Maybe he thinks (here I go again putting thoughts in his head he never once thought) he busts his butt at work and he doesn't want to deal with any additional issues until they arise? I have no idea where I'm going with all this because again as it's titled a tornado of thoughts. Procrastination is a personal description I'd give myself as well when it comes to personal life. I'm not that way when I work, so why is it that I'm that way at home?

I can't fix it at the moment so don't face it maybe is my underlying issue. You know if I think back on it, if I left my room messy...Grandma would come in and clean it. So if I leave it long enough will someone else take care of it? It's not working like that in adulthood at all...though I will say the hubby always gets us out of stuff that I personally think in the moment is going to destroy us.

Am I alone? Do I need to get off FB, Twitter, Instagram again because it's taking too much of my time? Will I really do more, if I did...or would I fall back in bed with the darkness of depression. I can almost hear it...Girl, go get you some meds! Ha...no thanks. I wonder how many would fess up to thinking that is what I need? This storm shall too pass but it does seem this is one area that I just keep going round and round the dance floor with. I need to find a new dance or leave. I'm also thinking I really should not publish this; then I think, but what if I did? For the readers within my circle of friends, would you still think positive of me? Now, does it really matter? Tornados can be beautiful and intriguing from a distance, but to be in it; uhm, scary, overwhelming fear, and the thought of life is about to come to an end. So please don't judge from a distance unless you've been in your own tornado. As I finish this last sentence...a release of huge rain drops begin to pound the outside furniture and a freedom comes to my soul. The storm never stays; yes, it may do some damage but from it I learn for the next time it hits.

I have it more together than I am thinking. Bills have been paid for the most part most of the time.

I've gotten my priorities in order when it comes to needs vs. wants. May I accept my knowledge through experience as a way to connect with others. It's not I that need to know if I'm alone...it is the reader that is needing affirmation and confirmation that they are going to be okay and are not alone in the darkness of the storm either. So here's to you...it'll get better, but you must walk right on into the storm so it can change you. Don't run because eventually it catches up somewhere in time. Actually in the fear of it all; you usually are only thrown around but never destroyed. You're going to make it.

Here's to risk, chances, and authentic vulnerability. Aren't you glad you're not stuck in my head? :)

Blessings!
~Yvonne

I feel like Maury...and, that was a lie! (Part 1)

Sometimes I feel like I'm just one human and there's no way to research, obtain, memorize, and hold up to all that I need to for the sake of our son. He has so many diagnosis' (dx's); Neurofibromatosis (NF1), Autism, ADHD, Restless Leg Syndrome, Auditory Processing Disorder, Periodic Limb Movement Disorder, Mild Hearing Loss, Sensory Processing Disorder, Receptive and Expressive Language Disorder. He's on these medications as of right now (removed 3 RX's in the two months which was Zyrtec, Melatonin and Prilosec, but have been thru many more including chemo); Focalin (3 daily), Clonidine (4), Mirapex (1), Miralax (3), Gabapentin (1), Ambilify (1/2).

Are you tired yet? I am. But I got to tell you...I'm writing this so maybe just maybe one more family doesn't have to do this terrible journey we've been on. I'm hoping I'm able to shed some light or be the transmitter of a light bulb moment.

Without going thru each one of the dx's in this blog...uhm, ain't (I know it's not a word) nobody got time for that; I'm going to focus this part on our first new adventure in getting healthy. The diagnosis' we are starting with here is Restless Leg Syndrome and Periodic Limb Movement Disorder. The reason I'm starting here is because if a person cannot get good quality REM sleep; there is going to be problems with behaviors that can mimic ADHD, Autism, some call being a brat syndrome, whatever. None of it's pretty if one cannot sleep. Is the diagnosis correct?...you must question that. This is just one link/site of hundreds that are an awesome resource for information; I'm not promoting or discrediting the sites, fyi. I'm not on here to gain any money, approval, or anything of the sorts.

You must be the advocate for yourself and your family.

I'm not even going to go into the story from birth up until the diagnosis as that is another blog for another time. So at Koda's IEP in January this year, the teachers had noted the decrease in focus. I said, Ok...well, we've got to go to the sleep clinic in KC then. I had already learned that daytime behaviors can be a result of not getting proper sleep. (Now mind you I have read many comments about upset parents who say; my kid sleeps! Do they really, do you know for sure they are getting REM sleep, are they tossing allover the bed, are they complaining their legs hurt, are uncomfortable, snoring or something else? I just ask that you make sure...the only assured answer is through a sleep study) I also told them the medicine dr. would not increase or change any "adhd/autism" focus medications to help with focus until we do make sure that he's getting proper sleep. So because I already know this...I call to make the appointment.

In the mean time I found out some things about sugar, insulin, and the food industry which made me livid (see my previous post on my new finds here). Mama Bear kicked in and changed everything and Papa Bear proudly supports the new life. Also while waiting...I was finished at my temporary job the first of February; which gave me time to research even more. I may not have a paycheck physically coming in, but I'm saving $ with this new lifestyle and also our lives which is priceless.

Appointment time: I just plainly start off with school's concerns and the lack of sleep Koda had seemed to be getting (he was more restless again). I also shared my concern about how I also know now since Papa Bear was also diagnosed with RLS that the meds to treat it are the type you become addicted to and need more for them to work. Ughhh! I told the dr. I don't want to increase the dose, I want labs done to find deficiencies in vital nutrients. I knew Iron deficiency was one that could be the culprit of RLS. She was happy and agreed, as she didn't like the med but it was our only option at the time (uhm no! Now I know that labs are the first thing that should happen to find deficiencies)...now mind you Mirapex is not approved by the FDA for children (not that any of prescription shouldn't be questioned if it harms more than it helps) so she gladly was ready to help decrease Koda off that med then Gabapentin is next.

Her note was this...It's going to get worse before it gets better. :( The behaviors will increase. The leg pains, cramping, bugs running around will get worse. (So our 10 almost 11 year old gets to go through withdrawals like that of a drug/prescription addict). Momma Bear wants to clean him out, but must admit to the guilt that I feel for having allowed this to happen! He's been on medication since he was 3, it's time for us to get a baseline again.

So we go for labs...the results; Vitamin D deficient (most Americans are), Iron deficient, Calcium, Potassium, and.... I asked for a check on magnesium...guess what? She couldn't do that lab because there's not enough scientific evidence showing in the "medical files" that it has anything to do with sleep. Ok, here's where I grin because I know she only follows exact protocols within her practice. I shared with her that I had a link to "scientific notes" through the National Institute of Health. That got her attention and I got the labs for that too.

What I found on my own was amazing through this website about Magnesium that everyone needs to read. I love how in this journey one thing then leads to another discovery...so I found out that not only does Magnesium or the lack there of cause cramps, tremors, and constipation (each Koda has) it coincides with Calcium deficiency and that the muscles in our body releases that when squeezed. Well guess what? Koda begs for pressure especially at night...he wants squeezed. Hmmm, coincidence I think not; it's his body asking for calcium.

After researching these deficiencies of his...I found more information that just flat makes sense. It is clearly a lack of proper nutrition (and it's not because the boy doesn't eat or that he doesn't choose good foods; loves broccoli, greens, fruit, meat). His body can't absorb the nutrition properly when his gut and kidneys are damaged from the prescription drugs. So we are are on a journey to clean out the gut.  I so should've listened to our wholeness chiropractor back when he was 3; he diagnosed Koda with Leaky Gut. I believe him now. I started the healthy life back then but the lies of the world that we can trust our government, our food supply, our doctors, etc and in the moment was so much cheaper (lie...long term affects on health and lifestyle) to use prescriptions because wholeness chiropractors are not cheap and society said; this wholeness, holistic, organic, approach was "crazy extremists"...well if that's the case we're jumping on that band wagon. Call me CRAZY!

I feel like Maury...and, that was a lie! I just have repeatedly said that over and over since I decided to research and advocate for more than just IEP's, therapy, etc. We want to thrive not just survive. I know without a shadow of a doubt. With great sleep, a healthy gut, exercise, organic clean nutrition (be careful if you garden this year; make sure your seeds are organic as well), and supplements our bodies will heal themselves. We are fearfully and wonderfully made. :)

He will slowly go off the prescriptions as we add in all the vitamins, etc. Now I will say, I also have added in therapeutic essential oils into this because I've seen them work. My husband even has had great results. We are shopping for only the best of the brands of vitamins so we can get the best absorption rate; no preservatives, no gmo's, organic, clean vitamins. READ the ingredients and labels please!!! Iron must be given w/ Vitamin C (organic orange juice is what we decided) for it to absorb correctly. See it's not just as easy to go to Walmart and pick a vitamin. Dang I wouldn't buy a vitamin from Walmart...they are full of sugar (whole other issue) and other not very good things. You are lucky if you absorb 1% of those. Don't waste your money. Until next time...blessings to you.

Please comment here and let me know you're reading, share, and most of all I pray you take something beneficial away from our journey. Embrace some joy! Here's to your health! Hugs!!

~Yvonne

Do you ever wonder...

...how you have ended up where you are today; good or bad? I have numerous times. I honestly live with a lot of regret. I've made some very bad decisions in my life and am not proud of those at all. I can't change what has already happened, but only apologize to those I've hurt in the process.

With that said, something pretty powerful has happened to me within the last few weeks. The reason I  say this is because for once; I'm doing something great! This decision not only changes and helps me but it truly is nothing but positive for everyone around me. It started like this; I decided Rick and I would do something once a month on our "monthly" dates (now that we finally got someone we can trust to take care of our son while we're out) that we've never done before. Trying something new and step out of our comfort zones, so the first date was a hypnosis clinic (don't judge as I'm being authentic in my sharing and don't want this word become a stumbling block in your walk with Christ if that's the case. Questions in regards to Christians and Hypnosis: please read). I won't go into detail about this because that has nothing to do with this post.

I came out of this date a changed person. My thinking of food...is forever changed. Sugar and flour are "Death Dust" to me and there's a big red flashing X internally when I see them. After this I think it was only a day or two later that we watched "Fed Up" on Netflix. I don't think this was a coincidence by any means but only another confirmation to the choice life we were about to take as a family. What we did next was...cleaned out the kitchen of most all labeled foods; yes, the 10 different bottles of salad dressing, canned foods, bags of whatever, boxes of prepared stuff, and all processed meats.

We headed to a local farmer whom has grass-fed beef, poultry, lamb, etc and interviewed their process. We agreed with their way of farming and raising their livestock. This is the only type of meat we will eat. So, going out to eat will be very limited if ever because it's so hard to find clean food out there. Along with the meat, we're buying only organic whole foods until we can get our own garden growing.

The next confirmation comes when our multiply diagnosed and complex son went through some new issues that threw up yet another flashing red "X" in my gut. The chemicals being pushed into his system by all the pharmaceuticals he has to take to function...what the heck am I doing to our son? I couldn't add to the long list of wrongs I have done in my life, so this has to stop. He doesn't have the choice to take them or not; he's been on medication since he was 3 years old and he's 10 now. He's been through one year of chemo as well as all the other drugs that go with that. These episodes put gasoline to the small fire within me that had been wondering how to get him off some of this stuff.

Many nights have been up researching, contemplating, praying, and bouts of crying when I found things I feel I should've already known. So, we first start in regards to him; with the med that isn't approved for kids...yeah, I know you're probably thinking why I would ever give my kid that. Here's why...If a child literally cannot sleep or get "REM" (good) sleep...there's going to be behaviors and a lower executive function. If there's a lower cognitive function & daytime behaviors..then he can't go to school and learn. Without going into that whole story; I'll leave it right there. If you'd like to know more about sleep and daytime behaviors please feel free to leave a comment, and I'll be in touch with you.

Here's another reason why...I trusted his doctors. She was upfront with us about him being on this medication and how she didn't like it one bit, but was the only thing that was going to help since his symptoms were so severe. She did forget to tell me though as time went on he'd need increased doses to keep having relief; well we're to that point now. He starting to tell us of the night time complications and school is reporting daytime focus decreasing. So, this is where we start. We go to see her; she's excited we want him off. We discuss something that I forgot about in the first meetings of this med or she thinks we discussed...vitamin deficiencies. Iron is a big player in this night time issue he has. Due to the chronic and severe cases of constipation we've dealt with over the years; Iron couldn't be given. So she orders some lab work; I ask for a full panel of deficiencies...she agrees. Guess what he not only is severely deficient in iron, he is in others as well.

Is your pain due to vitamin deficiencies?

Back to the research...I go looking into how the body can heal itself if it has the right "atmosphere" in which to do that. All the while; I have been using essential oils for diffusing mostly all these years. The reason I bring this up is that during these last few weeks we got pretty sick at our house; I made up a concoction; and within 24 hours we were better...normally we would've been down 3 days plus. We did not take any OTC meds or go to the doctor, but we did put some high dose probiotics into our system as well. Then my husband gets one of his terrible; put him out of order, gas knots as he calls it. Again I make a concoction, and within 30 mins he's feeling great. :)

Gut health...it all starts there. We're starting there, getting a nutritionist involved, and going to heal from the gut out. I found there are superfoods that will aid in the blood flow so our son doesn't have to take aspirin everyday, and we're adding in other foods/juices for his constipation (I'm assuming most of that is medicine induced constipation to begin with), supplements, and essential oils. We've cut down to using kids plates w/ dividers so we have portion control. We're trying new foods that we've never ate before; for me in particular would be kefir, butternut squash, and lentils. We've replaced pasta for spaghetti squash. All sugar has been removed from our diet except for those foods that are naturally and organically sweetened like fruit.

Guess what...we don't crave sweets! I really don't crave anything and we're hitting only about 4 weeks into this. I don't know if you ever wonder how you got to be where you're at today, but it's always by our choice and ignorance that we don't find ourselves with better outcomes. I was ignorant of all the sugar that is dumped into our foods. How sugar is killing us. There is such a long list of sugar that is named differently so they can list it in the ingredients without scaring everyone; and since more people are looking at the labels.

Names of Sugar :(

I dare you to educate yourself though and watch "Fed Up". It was the final call at our house to make a positive change for our future, our health, and ourselves. I'm only given this body for this lifetime and well I want to enjoy it. I thought food was an enjoyment...that was a lie that sugar gave; an addiction like cocaine. :( All approved by who we thought was there to help us, USDA, FDA, etc...NOT!

I may have made mistakes in the past but this one time...I'm doing something right, positive, and helpful. Oh yeah, and I got a treadmill. Put that sucker right in the living room; can't deny that guilt staring me in the face...so my first log of keeping track was yesterday. 1.6 miles in 33 min. Today was 2 miles in 33 min. 3 is my number so that's why I stop at 33. If you read this, and you would like to see more posts and details about such topics, or to follow our journey; please let me know. I can't read your mind. I also would rather encourage, engage, and entertain my readers; please comment and share.

Thanks for reading until next time. Happy Valentine's Day! Love somebody<3 p="">
Blessings,

Yvonne