Thursday, August 30, 2018

40 day experiment...wish me luck!


This is my experiment I'm going to try for 40 days (and 40 nights :)) to find happiness and overcome issues I have in all parts of my life. I feel like I'm having one of those dreams where people can see all of me, because I'm exposing all of my issues. But, I decided to share because there might be one other soul out there who is thinking the same thing. 
Ready to appreciate Fall and its symbols of letting go, metamorphosis, and beauty in the broken and fallen

I am too attached to technology, unbalanced, frustrated, jealous, and to an extent, stagnant. It is no surprise that as my body has built up a tolerance to my meds, my health as declined and my emotions have increased. My options towards a solution-or even a marked relief-have dwindled. I am so focused on refusing the 2nd brain surgery that my anxiety is at a height I don't know that I've ever experienced before. Obviously as my depression/anxiety/stress have increased, so have my pains.  At this point I'm desperate to do EVERYTHING I can to bring about a positive change in all facets of my life. 

I'm still working on my 40 by 40 goals (40 goals B4 I turn 40). Some of these goals I've already completed and others have been incorporated into this experiment. The biggest goal is to step back from technology, appreciate the blessings in each moment, journal through a specific issue each day, and fill the void with something good. I'm hoping to establish more balance, positivity, beneficial habits, and acknowledge my weaknesses and pains. Instead of ignoring, distracting, pushing away, numbing, or drowning out my sorrows, fears, depression, and pains, I decided on this experiment I created. What I'm doing isn't working, so here goes my new experiment.......wish me luck! 

LET GO                                                         &                            DO

Technology (Facebook for 40)
Spend quality time with loved ones
Grudge/Unforgiven
Write a letter and burn it {Bless and release}
Jealousy
Record Priesthood blessings
Thinking everyone else is happier
Eat rainbow of veggies and fruits
Little things (roll off my back)
Water Aerobics
Narrow vision of how things SHOULD be
20/20 scriptures/prayer for clearer vision
Fear ruling my life
List fears, make a chain, break through 1
Self Doubt
Write letters to myself and daughter
Misconception that Materialism + Physical = Success + Happiness
Camp
Addiction (sugar, emotional eating)
No sugar 30 days
Attachment to Money
Give to an organization/charity
Pride (not asking for help)
Memorize 4 scriptures
Need to be certain
Plan a trip
Need to be in control
Yoga 1-2 times per week
Negative Body Image & comparing self-worth to physical image
Doll myself up, pedicure, hair, date night
Judgment
Random Act of Kindness
Past Misfortunes
Delete old emails and open tabs
Mistakes; Mourn failures but forget to celebrate victories
Forgive someone and communicate forgiveness
Perfectionism
One day everything with left hand
Toxic people
Drink more water (lemon water morning and 130 oz daily) to clean out toxins
Comparison (thief of joy)
3 Good Things
Other people’s opinions and expectations; chasing people
Highlight the New Testament
Belief that best days are behind me
Watch 1 sunset and 1 sunrise
Difficulty making decisions
Clean out car, closet, and clutter
Need to be more and do more
Read “Enough” book
Pushing myself too hard
In bed by 10p.m. forty nights
Thinking my dreams aren’t important
New Bucket List
Procrastination
Take the 1st step to achieve a goal
Avoiding inner pain and root cause
Journal & 15 min meditate/visualization
Expectations/Idealism
Plan Christmas Gifts
Anger
New Theme Song
Influenced by others/Take on struggles
Every time taking on, pray to give to God
Imbalanced/Priorities
Re-establish morning routine
Thinking I’m damaged/broken
Take a picture of something imperfect & beautiful
Let go of yesterday and tomorrow; live in the moment
No phone all day long
Think life should be fair to be good
Send 4 cards
Finding Joy or comfort all the time
Paint 4 rocks & distribute to community
Satan’s lies/repeating negative thoughts
Snap Happy or mantra
Not facing truth/accountability
Journal “What’s the best version of me?”
Over-thinking and fear of the unknown (Worrying is like praying for what you don’t want)
Expect the best, prepare for the worst, and give the rest to God journal (20 min scheduled)

Anger

Have you ever heard of those furious toddlers who hold their breath until they turn blue and pass out?!? Sure, my daughter has had a great number of fits, including flailing arms and legs, Pterodactyl screams, tears, and eventually time-outs for both mama and baby girl. But she's never been so extreme that she passes out. YIKES. {It's a good thing I'm not a yeller. Maybe we would have a raging passer-outter on our hands. Truly, though, she is my world and the light of my life!!!}

These days, though, I am the epitome of an angry toddler who doesn't understand why she is being told, "No!" over and over again.

Turn my face blue and knock me out...emotionally, I'm a three year old.

Many days this month I've just wanted some cartoons, ice cream, to plug my ears, and then run away...from life. Thankfully I have a marvelous husband and a wonderful daughter to keep me here acting *mostly* like an adult. The past month we have spent almost $1,000 alone on attempts to take control of my health. Every single attempt has been a fail-fail-fail. Not only have we failed at improving my health, but I have in fact gotten worse!

Increasing one of my anti-seizure medications led to horrible side effects. I've had to revert back to my normal dose and am still having too many negative side effects (as if I never decreased, even though I HAVE readjusted). The many cannabidoils and even THC products I have tried have failed. MLM company products have been expensive and failures. Paying expensive specialists (so far) has led to more tests without any real solutions. Stress management strategies don't make a dent in my increasing anxiety, depression, insomnia (6-7 weeks), or really anything. My HOPE has chipped away to raw feelings of abandonment and rejection. Even though LOGICALLY I know that I haven't been abandoned and will survive, I can't seem to get my heart on the same page as my brain. My psyche is a lost, confused, frustrated division of my body having a full on conniption fit. But, as always, I chose to 'brave' it alone and in silence. Even my family wouldn't guess how much I'm fighting and shoving that anger deep down until prayer time. I just don't like to admit I'm struggling or bother anyone other than God. Watch out for prayer time because those pounding fists might show you just how angry I've been. (I'm speaking mostly figuratively...truthfully there may have been a shaken fist here or there. Don't judge. =))

I have ONE LAST chance with the NeuroStructural Chiropractor. I've had a few adjustments so far. The first helped for about 2 hours. Within about two hours, though, my pain returned at the same level just as before my adjustment. The next didn't help at all and I seemed to have a little bit of extra pain. BUT, I'm not giving up yet. I really do hope AND PRAY that it will work in time. Both she and my neurologist don't accept insurance, but it is okay. I feel so grateful at this point in my life to be able to try different medical approaches. There was that period of time that we didn't have work or insurance and then I had that HORRIBLE Obamacare/Marketplace plan. I had to put off treatment and tests for quite some time (neurologist wanted me in the hospital for care, but I did it at home. Root canal needed for 1.5 years. MRI and blood work requested. New health issues but no endocrinologist in our whole town so my plan wouldn't cover a nearby endocrinologist. I had hair falling out to the point of bald spots, swelling on top of my head with stabbing pains on my head and face, irregular heart beats, etc (changed from HYPO to HYPERthyroidism + occipital neuralgia + trigeminal neuralgia + MS issues). To be at this point where some specialists want to try things and we are capable of making it work is a tremendous blessing. Even if they have been failures so far, at least I'm not done yet. I have much to be grateful for, especially my husband's overtime hours. Sometimes it's hard to find gratitude when every ounce of awareness is focused on pure survival. But, I am reminded of the myriad blessings I have received. Thankfully there have been moments of decent health too.

Just as FALL approaches, I need to follow the archetype deciduous tree that drops its color-changing leaves to cover the cold ground as it bends in the wind. Dig my roots in deeper to absorb any grounding moisture that fell from above. Go with the flow. Instead of crying over the metamorphosis and release, I need to embrace this season of my life and allow the strength of my core to carry me through into the next season. I may symbolically go blue in the face and let the moisture escape my eyes, but at least this year it doesn't feel like acid is staining my face. There IS improvement!



I've thought about it quite a bit the past month and am going to try my own experiment. I detest the feeling of anger. And I haven't been able to shake it like before. So, I'm pulling back and letting go. But instead of leaving a void of missing habits and coping mechanisms, I'm going to try to deal with my pains and implement decent strategies. I've tried for quite some time to numb, distract, ignore, and push away the gnawing negative emotions that come with my 'broken' body. (*If you just judged me for saying broken...you better leave. Leave now. K, not really. But I'm about to be incredibly vulnerable. So, let me just say how I feel before we try to re-frame these thoughts. For now I'm just gonna lay it ALL out there. K? K*)

To be continued...

Wednesday, August 29, 2018

NeuroStructural Chiropractor

I've started working with a NeuroStructural Chiropractor. She specializes in working with the upper cervical part of spines, especially the Atlas. The atlas is the very top that holds your skull. 

She explained that most people's atlas has the type of angle like an airplane taking off for a flight. But mine is reversed like it's coming in for a landing. And it's extremely close to my skull. There should be more space to allow for the nerves, spinal cord, and all kinds of soft stuff (intervertebral disks, ligaments, muscles, etc) in between. 

You also can see my thyroid because it has calcified. Behind my thyroid is the bone spur that has grown on that vertebrae.

She used quite a few different assessments to see how my body is doing. I am carrying an extra 20 pounds on my right side. My right leg has pulled up. Some other measurements showed an obvious imbalance. 

She uses a heat sensor tool before and after adjustment. The table she uses is not a typical chiropractor table (although she does have one). This one is angled so as to focus on the atlas. She has a 360 degree laser tool to mathematically identify the exact angle and position to adjust. Then she gives 3 very light, direct, gentle taps. She explained that she is only moving it fractions of millimeters and all according to my exact measurements.

My first adjustment I noticed pain relief for almost 2 hours! My second one I didn't notice any difference. We will see how it goes. It will take my body quite some time to hold the adjustment. I'm hoping and praying that at least this will help with my occipital neuralgia. Even just one pain being released would be incredible. 

She doesn't ONLY do the atlas, but starts there and works down according to the measurements of the tools she uses to assess needs. I've been to many chiropractors over the years. Her's is the most promising.

Obviously my curvature is not great, a bone spur is noted (hidden here by measurements), calcified thyroid is visible, and atlas is significantly off.
Closer view of the proximity of my atlas to my skull . 
What an ideal spine looks like, for comparison.

Exact measurements of how I'm off and how she can then adjust me accordingly.

The heat sensor tool she uses before and after to assess alignment.
Hard to see the blue line, but the yellow shows that I am misaligned on the right (heat sensor).

The tool used to shift the atlas. It's very, very gentle. 
The most painful part of the procedure is touching my face to anything (anesthesia dolorosa). But, for a normal person this is entirely painless. Then I relax in a room, reclined, and come back to test the hold. 


Friday, August 10, 2018

Just say NO to drugs...and more brain surgeries!

FAQ

Several people have asked questions about what is going on. I'll try to answer all the questions here, since it's easier for me. (I'm still limited in how much I can talk.)

My title is deceptive. I'm not saying NO to ALL prescription drugs, but I'm hoping to avoid increases, as well as other negative options.


What is new?
My pains have slowly been getting worse and worse since February. I've worried it was because my body was building up a tolerance, but the side effects are so drastic that I've put off increasing my meds. (My neurosurgeon recommended increasing.) The last 4-5 weeks I have only slept well 2-3 nights. In the past 2 weeks I've had some nights where I couldn't even sleep 5 minutes. My memory has returned just a bit. Both have shown me that my body has built up a tolerance to 2 medications. The pain has gotten back to the somewhat-unbearable level recently at certain parts of the day. You can't tell if you look at me. I feel kind of proud of how much I can hide my pain and remain happy. But, sadly I've reached the point of "better return."

What do your doctors propose as help?
Neurologist: Increase meds, pain clinic referral (more meds). High risks because of high dosages. Thickening of the cornea, liver failure, an increase of issues I'm already having (cognitive, drowsiness, balance, dizziness, etc), and death.

Trigeminal Neuralgia Clinic was a bit of a disappointment. First you meet with a nurse practioner for the neurosurgeons. The whole team (pain management included) aren't even in the same building. She looked at everything and immediately decided I should get GAMMA KNIFE RADIATION "surgery" and said they typically start there for MS caused TN. It's less invasive than the surgery I had 1.5 years ago (Radio Frequency Lesioning).

What is GAMMA KNIFE RADIATION and their plan?
1. Injections into ganglion in cheek to see how I respond. After 2 separate injections they proceed with surgery at a later date.


http://www.flymedi.com/guide/how-much-does-gamma-knife-treatment-cost/

2. They screw a halo/helmet (like a cage) into your skull.

https://www.acoustic-neuroma-brain-tumour.org/english/acoustic-neuroma-gammaknife















3. Put you in a MRI.
http://www.checksutterfirst.org/gammaknife/


4. Oncologist and Neurosurgeon work together to use RADIATION to destroy the Trigeminal Nerve.
https://www.mayoclinic.org/tests-procedures/brain-stereotactic-radiosurgery/about/pac-20384679

5. Outpatient procedure, so you go home the same day. Cost is around $35,000-$45,000.

Success rates seem to lie around 75% with typical Trigeminal Neuralgia a year after surgery. At 5 years 58% have pain reduction (and risks increase with multiple gamma knife surgeries). However, MS-related TN only has about 50-60% pain relief after the first year and 20-30% at year 5. Some DO get worse, including a possibility of anesthesia dolorosa as well.



What did you decide? How did you decide? 

I spoke with several people who have Trigeminal Neuralgia, Occipital Neuralgia, Geniculate Neuralgia, and Anesthesia Dolorosa. It's amazing how rare it is to have the diseases (few have MS-related TN, very few have anesthesia dolorosa, and an extremely few have geniculate neuralgia). It's even more jaw-dropping how many suffer an incredible amount year after year. Truth be told it was quite depressing. Some just have to sit in dark rooms day in and day out. Notably since the pull back on opioids and what doctors can prescribe many have gone from sort of functioning to not at all. For some the gamma knife worked wonders. For others they've had to repeat it. There are some who strongly suggested I do NOT do it because they got immensely worse after the procedure.

I wondered why my KS neurosurgeon didn't do this first instead of radio frequency lesioning. But, I later learned that doing gamma knife radiation limits future surgeries available because of how much it damages the nerve. However, I have both typical and atypical TN anyway and have very few options as it is.

During our appointment with the new nurse practitioner for the neurosurgeons I had hope. Something CAN be done. But, her vague answers as to risks, as well as the question regarding my anesthesia dolorosa, made me think harder. I still don't understand how my brain could react so poorly to the first surgery and would react positively to this one. Plus, I always seem to be that rare patient. I did discover that anesthesia dolorosa can be caused by a traumatic surgery or a surgery that damages a nerve. It was an intentional damage to the nerve but unintentional waking up feeling the needle in my skull, burning in my face, and thinking that I had 6 people surrounding me trying to kill me. Maybe it's not that surprising that my brain can't understand the continued numbness. Confused on so many levels. ha


  • I am not going to do the surgery at this time. 
  • I have a MRI of my lumbar, thoracic, and cervical scheduled (and will have my yearly brain MRI at the end of this year). I will see my new neurologist one more time and see how I feel. If I don't feel like he knows enough or is too overwhelmed, I will go to a neurologist closer to home. 
  • I will continue to try different brands of CBD and even some THC
  • Sleeping and eating well
  • NeuroStructural Chiropractor is my new focus
  • If all of these fail I will try the pain clinic closest to home. If that fails I will try to push my plan of no surgery, but pain management at the Trigeminal Neuralgia Clinic. 

Are you going to sue your doctors or the anesthesiologist?
No, I don't think so. Honestly, I could sue three doctors who have royally messed up. I guess you have a higher likelihood of encountering some bad doctors when you've had issues for 20 years. Only one was truly negligent (2005/2006). Two were ignorant and careless, but my neurosurgeon is compassionate, my nerves were so severely damaged, and the anesthesiologist was young. I expect they both learned a lot from my case- PLUS I didn't die. I don't necessarily feel that any of them should stop practicing medicine (except maybe the first one). Don't get me wrong; I have to work on forgiveness every once in a while when feelings surface. But instead of focusing on the money I could have, forgiveness is where I'm putting my focus. Would my life be easier with a settlement? Yeah. Specifically those years that we didn't have insurance or jobs could have been less stressful. But, we've been taken care of and I've seen miracles come through the struggle. I can see why some people do sue. But for us we are just fine.


Have you tried cannabis/medical marijuana/THC or CBD?
I have tried several brands of CBD (hemp-NOT cannabis) in various forms (creams, tinctures, edibles, oils). So far it doesn't help all that much; 5-20% maybe. I can see if I only had one of my diseases that it could help (depression, anxiety, cysts on my ovaries, IBS, and maybe even fibromyalgia). But TN/ON/GN and especially AD are so severe that it really doesn't help enough. I am trying two new brands, though, as recommended by several others. THC does help me a bit with sleeping. But not enough to really want to keep it up (tincture, gummies-some combinations CBD+THC).  


How are you feeling?
I still have my usual issues. I still always feel like my lips are burning, tongue stinging, kicking in of front teeth, yanking out my jaw, bugs crawling under my skin, ice pick shoved down my ear and parts of my face and head being stabbed or electrocuted. I could literally be stabbed, electrocuted, a dentist performing a root canal on all the teeth on my right side without anesthesia (ironic), and a sprinkling of bugs, scorpions, hot coals, hot pokers, and a vice on my face and parts of my head, and my brain would know no different. Thankfully the half of my nose that always felt broken is better. But, sadly, my Trigeminal nerve is taking longer to heal than expected. 

Overall I'm much better today than earlier in the week, emotionally speaking. Truth be told, I was incredibly depressed, stressed, and angry. It seemed like EVERY attempt I've made to try things that have worked for others haven't made a noticeable dent in my severe pain and struggles, other than my anticonvulsant meds. In only a year and a half I've reached the max on one anti seizure medication, one Parkinson's medication, and an antidepressant that helps me with sleep and pain. 

The suffering people have with Trigeminal Neuralgia (suicide disease/Tic Douloureux), and especially Anesthesia Dolorosa, is astounding. It is heart breaking how so many of them have had to deal with it all. The depressing options I have/had ahead of me were maddening. Some people wrongly believe that ALL you need for a miraculous healing is FAITH. But, they completely remove God from the equation instead without realizing it. FAITH is more than expecting what you want to happen with only a focus on an easy journey through mortality. Faith is asking for what you want, but being willing to take God's will into account, as well as His timing, for the best eternal outcome.  Truly healing takes FAITH + GOD'S WILL + GOD'S POWER (Priesthood). For whatever reason, I'm not healed yet. In the meantime I feel better about not doing the surgery, trying the NeuroStructural Chiropractor, and the years ahead of me. I was angry for about 3 days. After the first day I prayed and prayed to deal with the anger I had welling up inside. Thankfully I am doing a lot better. Looking into the future usually served me well in my past. But now I'm working more on living in the moment, gratitude, and grace. Today was a good enough day and that is enough to carry me through to tomorrow. 

I have SO much to be grateful for and to celebrate. In a lot of ways things are going great. In a few ways things aren't going that great. So, if you add it all up, the GOOD outweighs the bad by quite a bit. 

#blessedms

Thursday, August 2, 2018

Medically Exhausted

I know it's not a term, but I feel like it's a thang! You can be emotionally, physically, financially, ...every 'ly' exhausted...and I'm adding MEDICALLY exhausted. There have been a few times I've reached it. Mayo Clinic after racking up lots of debt and lots of diagnoses, followed by, "There can't be THAT much wrong in one person's body." After a doctor screwed up and I started to die (serotonin syndrome). After my body rejected my first and second disease (MS) modifying drug. After my failed minor brain surgery. After my 6th spinal tap.

And this week...

My pains have progressively gotten worse over the last several months.  I kept chalking it up to stress, heat, two moves, and many changes resulting in MS flares. I've taken it on as a bigger challenge of hiding my pain and carrying on living as real & happy as possible. I assumed my pains would settle down as we settled into our new place and life. #reallifegaming

BUT, my memory has been starting to come back a bit. Not specific memories, per se, but my ability to remember things like numbers, various words, directions, names, etc. We've realized that my body has built up a tolerance again and I need to increase my medications, do another surgery...or something.

My KS neurosurgeon at my 2 week follow up said 3 things that I'll never forget.

  1. Your nerves were so, so, so badly damaged....SO damaged.
  2. You have anesthesia dolorosa.
  3. I can't do any more surgeries on your nerves.
  4. Oh...4 things... go down to the ER immediately. I'll call up a wheelchair and nurse. 
A year and a half later, I'm here. I moved to Colorado and was excited by the idea of a neurologist who ONLY sees MS patients and a Trigeminal Neuralgia Clinic. Plus accessibility to higher dose CBD. 

The Trigeminal Neuralgia Clinic first has you meet with the nurse practitioner for the neurosurgeons. They specialize in facial pain and I hoped I would meet with the whole team (pain management, neurosurgeon who would do the work, etc). But I only met with her and she was quick to say GAMMA KNIFE RADIATION was the next step. They typically do it first with someone like me (MS caused TN, ATN, but my other side of my face is TN1), instead of RFA. I asked questions about risks, side effects, possible complications, and the differences between RADIO FREQUENCY LESIONING and the GAMMA KNIFE. They both destroy the nerve. She talked a little about the ganglion (in my cheek). But she didn't go into any more explanations. All of her replies regarding risks were, "Not usually," "normally," "nooo," (with a pause). She had an approach more like, "It's so rare to have a complication that we don't need to discuss it." My KS neurosurgeon was really straight forward. I had all the hope in the world. My tooth had been healed after a year and a half, so I figured a surgery inside my skull would be too since it was more important. But in looking back I'm glad he went over all the risks and possible complications. 

The nurse practitioner mentioned some injections first and then afterwards doing the gamma knife radiation procedure. It's even less invasive than my last surgery. BUT, after talking to others who've done it, and a bit of research, it sounds more aggressive on the nerve. Immediately after the appointment I was hopeful. But, the more I thought about it, I realized why my KS neurosurgeon doesn't wanna do more. Radiation is a big deal. If you do Gamma Knife, you limit possible surgeries in the future (granted, being MS caused Trigeminal Neuralgia, I'm limited already). A decent % of people get worse after the procedure. AND if my brain couldn't respond well to lesioning how would it respond to a focused degree of radiation? WHO gets Anesthesia Dolorosa and then does MORE surgery to mess up the nerves? The only other surgery my KS neurosurgeon mentioned (several meetings later) involved stimulator/electrodes implanted under the skin with a pace maker kind of thing to adjust. The few people I know who have anesthesia dolorosa have ONLY done these (or a pain pump) AFTER they developed AD. Did I mention my PTSD from waking up in my last one? AND that they screw in a halo/cage thing into your skull and I figure if I can't handle hair or wind touching my face, how will I handle the cage? And injections into my face while awake weeks beforehand? An oncologist will be involved...it all felt like a rabbit hole I didn't wanna go down. 

A few days later I met with the new neurologist (who, by the way, doesn't take insurance and instead of $300 for a first visit it was $390...gulp. Thank goodness for my hubby's new job with overtime =)). My neurologist was quick to talk about the next surgery, why I'm not currently on a disease modifying medication, and that I should move on to a pain management specialist. But mostly his focus was on the 2nd minor brain surgery/procedure. He talked about how I was such a complex case and his specialty was just MS (I'd have to talk to the neurosurgeon about the questions about nerves and even some medications). It was obvious that he wasn't comfortable with TN. I started to cry...I don't want my ONLY options to be continually increasing my worst anticonvulsant med every 6 months until I can't anymore OR a procedure with radiation! It was then that he got a box of tissues, Mike woke up (he sleeps during the day and can sleep amazingly well in a sitting position-haha), and he got up to get a book. He searched through the book. Gave me a pamphlet for a pain management doctor. He put together a lot of orders (MRI of brain and spine, blood work, etc). Wrote one prescription and then I reminded him that he will have to be in charge of a lot more than one. 

We decided to increase one of my anti-seizure medications. I'm at the absolute highest you can go...and need to be aware of any giraffe-shaped rash that is also a sign of your CORNEA THICKENING! Oh, and there's a possibility of death too, so I have to go into the ER immediately if I notice the rash or vision changes. (No wonder why my KS neurologist didn't wanna increase that one to the max. She knows that if there IS a side effect or complication, I'm a likely candidate.) Thankfully, though, if you notice the rash your thickening cornea will go back to normal after you go back down. It's the best medication for me at the moment...but yikes. 

I also stopped for higher dose CBD options afterwards. So far I've tried two without much luck. CBD helps a lot of people, but my pain is so severe that it only helps a little. 

So, at the moment my options are:

GAMMA KNIFE RADIATION with a halo screwed into my head and 2 injections done weeks before...into my face...no better way to flare my PTSD, TN/ON/GN/MS and AD!!!

https://www.mayoclinic.org/tests-procedures/brain-stereotactic-radiosurgery/about/pac-20384679
OR

INCREASE ANTICONVULSANT MEDICATIONS which results in side effects like:
  • Major memory issues (I feel like I'm heading down the dementia path my grandma did when she would talk to me and try to remember the names of her grandkids).
  • Drowsiness
  • Dizziness (increased)
  • Muscle Spasms
  • Suicidal thoughts
  • Painful sores around mouth or eyes
  • Blistering/Peeling or yellowing skin or red/purple spots on body
  • Blood or Liver problems (I have to get regular blood tests to make sure mine is still working)
  • Weakness, Fatigue
  • Severe muscle pains
  • Weight gain
  • Frequent infections
  • Worsening depression, anxiety, headaches, etc
Many of these I ALREADY deal with-have dealt with for 20 years-on a daily basis. So it's hard to determine which is which. But I can tell you I don't want to increase any of those (and obviously some have already increased, but it's worth it for some of the pain to decrease). 

AND...

I think we've decided that I'll increase one medication and see how I'm doing. In the mean time I'm looking SO far OUTSIDE the BOX that I've turned it upside down and am trying to stand on top just so I can see any outliers who have miraculously found relief, no matter how tiny. #shortgirlproblems

I've tried several higher dose CBD items from edibles to tinctures to creams. So far it's minimal improvements. But a cream I bought from California (Gallixa with Gallium Maltolate- only 0.5%-higher concentrations injected or ingested they use for cancer patients), and it seems to help. It numbs my face more, but actually does give some relief. This type of gallium in topical form doesn't have side effects and is more natural, which I like. Next I'm searching for another thing a gal from Spain told me about. She has had TN for 10 years and Anesthesia Dolorosa for 7 years. She landed in the hospital because she had HOLES in her pancreas! The meds are so severe, so she tried something you don't hear much about. If I find it and it helps I'll share. If it doesn't, I'll just add that to the virtual list I keep of things that have cost money and failed. #HEALthISwealth                Did I mention that this week I found out a guy who's had MS for 20 years and TN for a while was in the hospital recently with a bad attack, ended up having bleeding in his stomach, and passed away this week? (She reassured me it was also due to being on blood thinners, but the timing of me asking questions and this coming up was eerie.) 

I was depressed and honestly a bit angry at all the decisions I have to make about my health with what seems like choosing between an uncertain path or a bleak path. Decisions. Decisions. Dementia or Death or DEAD nerve beyond what I've experienced thus far...why do those have to be my options? Plus all my other diseases? There are so few people who have AD, so there is minimal research. There aren't that many people in the world who have this thing where we constantly juggle knives, lightning bolts, scorpions, hammers, acid, hot pokers, bugs, vices, and fires behind invisible walls. Studies are almost nonexistent. So you are left with brilliant minds who offer conflicting treatments and then your own gut...which ironically is a side effect to many meds. haha. My spiritual gut is pretty good, but my physical gut is a mess. (Dang doc who almost killed me with my intestines entirely shutting down, followed by kidney issues. Then you add in all these medications and it's a war up in here. Yes, I'm working on my microbiome.)

But, once I got that Gallixa cream and have done more and more research, I feel like I can come up with a plan on my own. Then meet with the pain management if the things I'm setting up don't work. Yes, that path will involve more meds, some injections of all kinds of things, and MAYBE another surgery. But I'm putting all of those options in my back pocket for the moment. We will see how my so-far-out-of-the-box-it-looks-like-a-dot gets me. The glass o' hope is still half full!


{My plan:
  • Bed 10:30-6
  • 6 glasses of water (plus morning lemon)
  • Clean eating as much as possible
  • Gallixa
  • CBS
  • Atlas Orthogonal and NeuroStructural Chiropractic
  • ?Wait on increase with Lamotrigine or go ahead?
  • Water Aerobics 3 times a week if possible}


Monday, July 23, 2018

I sent $2,700 to a woman I'd never met before...


It wasn't that long ago that I sent $2700 to a woman I'd never met .....





and it was one of the best choices I've made!!



We had less than 24 hours in Colorado when my hubby had his interview with the new company. We had to decide if we would rent or buy. We toured two apartments and met with one realtor. We decided on one apartment, but as I was applying online at night I felt a prompting of "NO! There's something better!" So I stopped and texted the realtor about a rental site he mentioned. I spent that night looking through apartments. The minute I landed on one in particular I felt great about it. I looked on, but came back to it. I emailed the owner and hoped she would get back to us.

The next morning she called me and I felt great about her. But, Mike had finals and we had to get back to Kansas ASAP. We weren't able to get into the apartment. So, we told her we would take the apartment site unseen. We drove past it, but couldn't see in it. I sent the money quickly and then didn't hear for a few days. Our cute owner had been on vacation. When she got back to me she told me that there were 5 people after us who wanted it. Some interested renters were across the street and willing to pay MORE. I gulped. It would be easier than dealing with us across states and she would get more money! We hadn't even signed a contract at that point. But she was SO honest that she said she would still give us the apartment at the price advertised!

All the while I was dealing with the apartment managers in Kansas who weren't the most honest. I kept sending people who desperately wanted our place, and then they weren't interested. (Just so happened we moved one week after our neighbor did who had a unit just like ours.) They kept telling the interested renters that they had another unit available and ours was rented. All while telling me that no one was interested and we were responsible for rent for the next year. I called them out on what they had been doing and saying, since the potential renters told me. They admitted that it was the case and they were holding onto an application. It was just LAST week, a month and a half after we started, when they finally rented it (after I sent several renters who qualified).

When we got to Colorado, though, the day we were supposed to move in the carpet was not installed and the installer, along with his daughters, were just hanging out. I saw that there was new pad mixed with old pad-some with stains, some pieced together, some cut and not taped. The installer said they just had to install the carpet and they would be done. The kitchen wall was messed up. The living room outlets were hanging out. The bar was a tiny bit messed up and I thought...oh dear...what else will be wrong? (Turns out NOTHING else was an issue. It really was just the workers who messed up. Our landlord did EVERYTHING right and planned it months before but sometimes things just happen. In the end it was TOTALLY worth it because we love the gorgeous kitchen, brand new carpet, and so many other upgrades she made for us!)

They were pretty minor things, but the stress of the move, drives, lack of sleep for weeks, and uncertainty with work amped up my anxiety.
We had to get another hotel that night. Uhaul changed where we could drop off the truck the next day to more than an hour away. My husband's job said, "We were gonna have you start on the 12th. But if you don't hear from me by the 11th, just assume you start on the 13th." By the afternoon of the 12th the carpet still wasn't done and we hadn't heard from his job. Then when we got in, the a/c didn't work. After an hour my vision, hearing, intestines, stabbing pains, nausea, dizziness, fatigue, numbness and tingling were out of control. We had to get another hotel room. (3 different hotel rooms in 3 days.)


I thought, "WE HAVE MADE A HORRIBLE CHOICE!!!"

But it has been WONDERFUL and ABSOLUTELY the right choice!! Our landlord is so incredibly honest. She had arranged things WELL in advance but the subcontractors really messed up beyond her control. In fact they really messed up parts of the kitchen and had in fact tried lying old pad. But she made SURE it was RIGHT. She went over and beyond. I adore her and appreciate that she is so honest, Christ-like, and more loving than most people. We could NOT have chosen a better person to rent from. In fact some things that we said were perfectly fine she decided to upgrade anyway. The amenities are amazing! We had a friend come stay a few nights (they wanted their own space) and they stayed in a suite above the clubhouse. The indoor/outdoor pool is perfect for me! My hubby and daughter LOVE the choice of 3 jacuzzis. The a/c works perfectly-best a/c I've had in 5 years!!! The weather is so much better for me. I've actually gotten OUT in the SUMMER for MORE than ONE HOUR ONCE a WEEK without major issues. (Granted, I'm still quite limited, but STILL.) That is a first in 5 years. Our neighbors are great. The ward is AMAZING!!! My old Young Women's leader is in our ward and we had no idea!! (She was super young as a youth leader, so she is an instant friend I adore.) A woman who hardly knew me took my daughter to a park and helped me out several times. She is awesome and so fun! I connected with her instantly. A friend of mine I haven't seen in 20 years had an aunt and uncle in our ward. They were the ONLY part of our moving puzzle that actually went well. Her aunt brought me flowers and sat and talked with me as everyone moved. There were so many people who helped us move. In a short amount of time I also got to see my dear friend and it was just like no time had passed at all. It has made me cry several times as I think about how perfect all of this really is for us right now.


The rooms are huge! My daughter's room has a murphy bed, little shelf, dresser, piano, and still plenty of space!



My husband LOVES his work. His boss is amazing (and brought him to the company). They are doing well. The company is WONDERFUL! They are family oriented and actually have some holidays off. They want the environment to be positive and even have a special room for refugees they've hired to be able to pray several times (Muslim-I have a special place in my heart for the call to prayer ever since I lived in Israel. It's not a practice I follow, but I respect others whole heartedly). He works 12 hour shifts which have been really hard on my daughter and I to adjust to. BUT, it also means he has 3 day weekend every other week and sometimes 4 days off split in two. We've been able to visit some gorgeous land and I can actually get out and walk some. I still have a long way to go. But, I'm hopeful that slowly the changes will add up. I meet with a new neurosurgeon and neurologist within the next week and a half. Even if just a tiny bit of my pain could be taken away, it would be incredible. Life changing. 

If your whole family wants to visit us, we have a place for you!! This is just one of the suites and the special little touches they do to make you feel like you're at home!




By the 2nd day in our place, Mike said, "This just feels like home." I worried if he would hate it since most of his life has been in Kansas. But all 3 of us have talked often about how PERFECT this place is for us and we didn't even know we needed it. It truly feels like HOME.