Chiari community + Essential Oil.

I am on the Chiari FB pages - I read most of the posts that come up in my feed but don't often reply.  I  have a hard time with posts - I become very psychosomatic.  When I read about someones headache or vertigo or shoulder pain, I feel it.  When I feel it - i get worried.

I posted on the Chiari FB site today for the first time in a long time to offer any oil support I could for anyone out there looking for a natural solution to some of Chiaris worst side effects.  When I post about my Chiari I am always cautious to use the word "cured"  I feel very cured and I like to live in the spiritually positive place where I celebrate my health.  I know many people - even those who have been decompressed don't feel cured. I guess I could say I am a survivor.

It has been an exciting 5 years since my surgery.  The unexpected was that I have given up doing ART as a career.  I had started the Artery to teach classes to kids, mainly silkscreening.  I still love to do that, but as I don't promote my artwork - I also don't promote the Artery.  My focus has turned a bit more inward on my health and my choices - our lifestyle.

When I wasn't able to be as active after my surgery - and then even after physical therapy, cardio was just not my friend.  Taking a run or doing jumping jacks - for certain I will have a headache and be done for the day/night.  I never hurt during cardio - but a few hours after when it is too late.  So, I listen to my body and don't do it.  (great advice from Dr. Oro) When I could no longer eat what I wanted and then pay for it in the gym - I had to change the food I was eating and this led me to many netflicks documentaries. (one of my favorites being FedUP)  I had to begin to question everything we were told about food.  The blueberries in my favorite "healthy" Nutrigrain blueberry waffles, were NEVER blueberries.  It kind of blew my mind. I turned to eating far less processed foods as well as starting to reach for anything more raw and more natural.

July of 2014 I went to an Essential Oil class at a friends house. Her college roommate was there and she was educating people on how to use oils for natural remedies.  Turning to Lavender for sleep, Peppermint for a headache, clary sage for hormones, balance and/or serenity for anxiety.  I was quickly interested in learning more.   I ended up starting with a kit and learning the very basic properties of the oils.  I watched my family benefit from having these oils and I ordered a few more each month.  I shared with family and friends and quickly a business for myself was starting.  I was getting such great feedback and really loved that I was able to help others!

Last fall I went to the doTERRA convention and learned more about the company and the products.  I came home with a very strong WHY - why I needed to continue sharing oils with people.  People can really benefit from having oil as an option for their wellness.   I am about 18 months into this new journey, but feel very confident with what I know to be able to share and educate with people how to get the best benefits from oil for their families.  I would love to extend my help to anyone suffering from the effects of Chiari.  I am in NO WAY anti-doctor, anti-vaccine or anti-medicine.  I clearly have benefitted from all of that in my life.  Oils can not change the position of your brain, or decompress your skull (and add in some mesh and metal) - but Oils can offer so many others things to those suffering from the side effects of Chiari.  I am not a doctor - I am a mom and a Chiarian who has some experience using EO.

Email me -   lisajohnston@mac.com or text me  303.522.0500

let's try this again......

There I was - FINE.  Getting better everyday, getting busy - ambitious, and eager.  Until I got that pesky blood clot.  That was a bit of a set back.  I new restricted diet (i could never get my INR's just right and steady enough to claim victory for long)  It was a hassle.  Slowing down and then starting warfarin.   6 months to the date I was back in the doctor asking when I could be tested so that I could stop treating my bloodclot. (hoping it was GONE)   I went in for my test 02.29.12.  Leap years are great dates.  and with the great date came a great conclusion.  I am DONE!  No more blood clot!  Once again, I am free and clear.   Let the to-do list commence (which it really already has) but I am just glad to be drug free and on my way again.

leaps & bounds

One year later and I have made leaps and bounds.  When I found out that I needed to have decompression surgery I crumbled.  I was a mess.  It took everything my friends and family had to push me, lead me, coax me forward. There were so many hours of phone calls with encouraging words. (my dads were the best - he was the strongest and most logical about it) There were emails of encouragements, facebook posts, suggestions from friends who had gone thru things similar.  Hours of reading peoples blogs of what to expect, seeking proof or hope that it would be OK.  Strangers shared their stories and I even had a few friends that knew about Chiari first hand.  It took that huge collage of people to hold me up and be brave enough to push forward.  Head up - you can do it.   and I DID!

For the sake of documenting where I am at today I will say that I feel as if I am healed. I have very little pain.  Headaches, chronic neck/shoulder pain and numbness - all but gone.  Victory.  I do have issues with my memory.  I used to remember everything, almost to a fault and now I have issues with short term memory as well as long term.  I am hoping it is something that will improve.  It bugs me, but probably bugs John more.  I am not consistent like I used to be.   Also, I think brain surgery brought the hypocondriac out in me.  It might really be the blood clot that actually started me down this path of worry.  I have been told by so many what a close call that was.  But, I was someone that went to the doctor once a year - now it seems (especially with me being on coumadin/warfarin) that I am at the doctor twice in a month. (or more) 

Besides all of that, this last year can be looked back on and documented as the year that made my family better, stronger, more thankful and more present.  I have to again thank John, Mia & Ryan for all of their love and support and thank all of my friends, near and far, that gave so much to help us through a tough time.  

We celebrated this last year with a trip to San Francisco.  We were planning this trip for 2010 when I found out that I had to have surgery. The trip was postponed and I am so glad we made it there.  On 11.11.11 (probably the ultimate date on the calendar of my lifetime)  we crossed the GoldenGate bridge at 11am, and then climbed this hill and took this photo at 11:11am on 11/11/11.  

11/11/11 at 11:11am - San Francisco 

left: starting our san francisco adverture
right:  the latest hair photo with my new locks.  my hair grew 6 inches this year and is now unruly in a braid.

I named him BOB.

My blood clot has been named.  He hangs out with me all day, so he deserved a name.  Thank you to my friends on the soccer field that insisted I didn't leave without naming him. (kind of like naming a hurricane)

So, with Bob came Lovenox shots in my belly to thin my blood.  You would think that is no big deal but, I was.  I do not have the ability to let my brain tell my hand to poke myself. (not with a big needle)  I can do finger pricks no problem.  At first it was probably funny to watch me try, but then it got stressful. Luckily John was there and took charge and did a fine job.  Nurse John - along with my neighbor Jen who is a nurse gave me all of my shots.  Twice a day for about 12 days.  (and those shots.. they are $51 EA.)  That hurts too!

Because I have to be on Coumadin (blood thinner) for at least 6 months I had to get a medical alert bracelet.  OK, i didn't HAVE to - but I had a persuasive doctor who told me why it was so important.  Advice taken.  It kind of blends in to the rest of them, but I have been told that a responder would check before treating me.

lucky once again

August 01st, I am cleared.  I am told I can go back to regularly scheduled programming (although still, take it easy)  We celebrated by going on a trip to the Sand Dunes.  I had been wanting to go there since the previous spring.  The last time we went Ryan was just a baby and I had to carry her thru all the sand.  

It was a great trip.  We got there on a thursday and instantly went for a hike in the sand.  I was hoping to pace myself and make it to the top - but I barely made it up the first hill.  I had to sit and wait for John to go ahead and then come back to get me on the way down.  I was pretty bummed that I didn't have the stamina  that I thought I had.  

After our first hike we went to our campground.  We stayed at a KOA with friends who have an RV.  We slept in cabin number 2. (which was a tuff shed with 2 beds and a fan in it)  I slept on the little padded matress against the log frame.  In the morning I woke up and felt very out of whack.  We went back to the Sand Dunes and this time I had it much further.  Not to the top, but we still hiked steep hills of sand for about 2 hours before we stopped to take in the view and then turn around and go back down.  Then we hit a second hike with rocky terrain up to a waterfall.  I was beat and my side continued to hurt.  I thought the entire time that it was from sleeping on that little mattress against the log frame.

We got home from our trip and a week later I was back to see Gina (my physical therapist)  This time instead of working on my neck - I asked her to work on my lower ribs.  (left side)  She could tell I was out of whack (which i am sure in addition to my other ailments, I was)  I felt much better when I left, but it was short lived.  That night I couldn't sleep and felt like I couldn't breath. I couldn't lay flat or on my left side.  The next day I went back to PT but had to see a different person.  I told her that i was in serious pain.  Like on a scale of 1-10, I was a constant 6.  While she was working on me I had such pain that I was begging her to help me.  I was at a 9.  I couldn't open my eyes and felt like I was going to pass out.  When I left I remember being tingly and short of breath. She told me that it was skeletal and muscular and that if I went to the DRs office they would say I was having a heart attack, when I wasn't.   

Thru the day I sat in bed and i alternated heat and ice.  I have had friends that have had their backs go out and I figured this is what you had to do. Rest, be still - relax. Later that day I had places to go and things to do.  We had 2 soccer practices to get the girls to and a Back to School night for the parents to attend.  I tried to get thru the routine, but by about 6 I couldn't barely stand.  I had to lay down.  John got it all done and went up to the school.  We got take out - ate and then put the girls to bed.  I sat on my computer for a bit looking up anatomy so I could try to tell where I hurt and what it could be.  It was about 10PM when I stood up to get back in bed and I couldn't breath.  I had to bend sideways and lift my head to get a breath.  I texted John.  something like "please come help me"    (he was in the basement)

He came up - assessed.  I told him i HAD to go to the ER.  I had to see a DR. i couldn't breath.  We didn't even feel like we had time to call friends or parents.  John woke up the girls and I started walking to the car.  Down the hall, down 14 stairs and out to the garage took me about 10 minutes.  I must have looked like Tim Conway from the Carol Burnet Show, shuffling my way to the car while holding my back and trying to catch a breath.  We went to Skyridge.  For those of you in Denver - I highly recommend it.  I waited for about 5 minutes before I was getting checked in and had an IV started.  They were ON it.

Lots of tests, lots of waiting (they were busy with ambulances coming in)  My girls got picked up by Hooie, Johns mom and taken back to her house for the night.  We waited some more and around midnight they started talking about a blood clot.  They were waiting for a DR to sign off on a CT Scan.  My blood work came back as elevated and so I did get a scan.  Around 2 AM they came to tell me that I did in fact have a blood clot in my lung.  The doctor came in to explain that.  He told me that he was surprised I came in to the ER conscious.  I guess I didn't realize how serious it could have been.  I had told the nurses that I had called my midwife in May after being on BC pills for a month - complaining of pain in my calves.  She told me it was all in my head and to call her back if i saw streaking, of it my calves were warm to the touch or swollen red.  None of that ever happened, so i continued to tell myself that pain I felt was not a big deal.  Turns out that was bad advice and a disservice to me.  I had gone off of the BC pill at the end of July after telling my regular doctor about my leg pain. BUT, in August I had started another kind that had less hormones. (to continue regulating my cycle/mood since my surgery)

This was a long to do of a post.  All still very fresh in my head.  I feel like I was once again very lucky to have had it played out as it did.  A close call for sure.  I am really so lucky that nothing happened to me while I was in the middle of nowhere in all of that sand.  I can't imagine how you would even get help (cell phones don't work out there)  Also glad it stuck in my lung and not my heart or brain.  

i see the best sunrises while in the hospital.  Maybe those are the only sunrises I really see, since I am not a morning person.

SEPT 01.2010 - AUG 01.2011

I was diagnosed with Chiari Malformation in the late fall of 2008.  I met with Dr.Oro for the first time in January of 2009.  When I met with him he looked at my MRI and talked to us about what Chiari was and told us that I would some day need surgery. I was a candidate for surgery at the time, but there was nothing on my MRI that showed urgency.  We did enough research and decided quickly that the risks of surgery seemed too great with my current quality of life.  It is so easy to find the really scary Chiari stories online. (and I found them all)

>>FF>>   September 01, 2010 I went in for a check up with Dr. Oro.  I knew things had changed and I didn't feel so good. (lots of numbness, chronic pain in my neck/shoulders and fatigue.   John was out of town - and I expected him to tell me that things were different, but manageable still.  I was so wrong.  He took one quick look at my MRI and told me I was going to have surgery.  We all probably remember the story of the next couple agonizing months - with magical energy healings and the best support group of friends a girl could have.   

>>FF>>   August 01,2011  - 11 months later I am good.   I was back for a check up.  (un-easy to tell him I had fallen) and wondering what kind of follow-up that may have.  I took John with me not to jinx the day (since he was out of town when I got the surgery news last year)  My appointment couldn't have gone smoother.  My MRI looked great - he didn't even mention my syrnix (which means there was none, it's gone) 

In conclusion he told me to continue to take it easy - go at about 30%.. and then gradually work up to my goal in whatever I am doing. (30%?) I was going at 30% in February.  I told him of my yoga and tennis and even my 4am IKEA adventure (showing that I have my stamina back to go to opening day of Ikea.. that was a milestone)  Maybe then he realized that relaxing isn't really in my vocabulary.   

One more highlight - the nurse asked me if what medications I am on.  I was so proud to answer, NONE. (she even seemed like she didn't believe me as she made a big "X" in the box)   I never thought that 8 months post-op from brain surgery I would barely need an Advil once a week.  I was just as scared of what I would need post surgery to keep me afloat, as I was about the surgery.  I didn't want to live on prescriptions and have any addictions to pain meds/etc.  and yea, I did it!

I DID IT..  big sigh, huge smile.. tons of gratitude.. all is well.

on the left you can see my syrnix (the white mass) and in the image
on the right my spinal cord is open (the grey area is my spinal fluid flowing)

some photos along the way -and bottom left: dr. oro taking one last look at my scar.

The downside of brain surgery

I got a check up MRi on 07.11.11 and I go to Dr. Oro on AUG 1st for him to read it and tell me how I am doing. Even though I feel good, if he tells me all looks good it will be an extra piece of mind.

BUT, tonight while I was at the pool, I stood up from my chair (with Ryan in my arms) and I went to step backwards and walk around the table.  I tripped over a stupid curb and fell backwards landing HARD on the concrete (with an extra 45lbs on me from Ryan)  I landed right on my ass and hit my back/shoulder on the picnic table behind me.  Initially I didn't hurt (and I was glad I only had 5-6 people who witnessed the clumsy fall) BUT, as time passed and my anxiety about my fall set in I was a wreck.  I left the pool early and went home for some advil and rest.  I tried to take my mind off of my fall, so I went to sleep early.  I woke up about midnight and assessed.  I was tingly almost head to toe.  Even my lips seemed numb.  How much of this was stress? anxiety?  and how much damage did i actually do.  The pisser is - when Dr. Oro reads my MRI, will I be able to celebrate the good news (assuming that is what my MRI will show?)  or will a little of me think that i ruined the surgery with that fall..??  I jostled my brain, and just hope i didn't jostle that metal plate loose!

This is something that will always be in the back of my mind (no pun intended) and every time i fall or have an accident - my fears will resurface.  There is the downside of brain surgery.  (regardless of how great i feel daily)