Here in Oregon

I made it here and through my first day of treatments. I had four IV's and when I got up to leave, waves of nausea came over me and I threw up four times before I left. One for each IV bag?

My concern today isn't me but Thomas, who is at home sick with a 101 fever. Mommy-ing from a distance through Hannah is hard and I wish I could be there for him. Pray for him.

Tomorrow will be a rough and long day. I have been dreading tomorrow more than today actually. I hope it goes better than I imagine and I sure hope Tom turns a corner for the better. I can't stand to see his sick face. :(

Unexpected gift

I woke up from an IV induced sick-nap to a mysterious letter addressed to myself from myself that I did not write. I opened it just now and it was full of cash and a lovely encouraging letter full of verses from someone anonymous. If you, or someone you know sent this, we want you to know it arrived safely. We also want you to know that it arrived safely against worse odds than you know! Our mail gets opened and stolen here all the time and we can't seem to get it stopped. People close to us have learned to send checks or use PO Box 486 because we have had gift cards, cash in birthday cards and other gifts stolen. Also, someone smashed our mailbox a couple weeks ago and it doesn't even properly close right now.

The letter was still intact and it was very carefully packaged. It was a real shock to open and have ten $50 bills stick out though. Hannah said first thing, "Wow, I can't believe that wasn't stolen." However, we know these little things are not too great for our great God in Heaven.

We had not yet spoken about what to do about cash in Oregon for food and expenses for two weeks because we don't really have any extra. (What's to talk about in that case?) Jim has been praying without my knowledge about what to do. He sometimes shields me from additional worry because of my adrenal problems. That prayer was answered before I even knew about it. So, we both thank you. We are continually humbled by undeserved love.

I leave May the 5th. Pray for my family during our separation for safety and effectiveness of treatments as well, if you would.

Love,
Jim & Nicole

Just a crumb

Do you ever feel like you are stuck in a vast deserted place void of landmarks looking for a breadcrumb from heaven that urges you to 'go this way?'

Oregon bound? I think.

Looks like I'll be heading back to Oregon for a couple weeks during the first part of May, Lord willing. Then, I may go back to Oregon every 6 weeks or so for 1-2 week treatments, as the Lord allows. After a lot of prayer and thought, this is what Jim and I feel led to try to do. With my illnesses, there isn't a quick fix and this is a longer term approach to gaining and maintaining wellness. We only have the first trip planned at this time with my doctor. We will buy airline tickets for it today. Please pray that we will be clearly led the way in which we should go, one step at a time. This is what we want even more than simply me being well.

I have to tell you all, God has been good in providing helps in all forms when we need them. I can't praise God enough for the amazing ways in which He is evident in our lives through this. One huge bonus of being so sick is there is no doubt about a real and living Savior. His presence is undeniable when things suddenly just simply unfold before us out of complete confusion at times. We have this first trip mostly hammered out, but not the next. We are learning to take things one at a time, in faith, as we never did before.

This may be no big revelation to you, and if that is the case, I am very glad, but I have learned something I would like to share. As a person who used to plan things way in advance and stick tight to my plans, it is a big deal for me to learn to give my "planning" up for "whatever-comes-next" instead. Even at the risk of appearing flaky, unreliable, lazy and all of those other undesirables that type-A personalities loathe, I do not plan like I once did. Regrettably, I gave up my planning problem only by force, so I cannot toot my own horn here. (Note: more force required to change more stubborn people.) Currently, I am often unable to even plan to cook supper a few hours later, so I rarely make plans anymore. Here is where the problem/lesson learned about planning is:

I used to make decisions fast and often without consulting anything other than my own agenda. I used to be guilty of praying that God would work according to my very detailed plans rather than fully trusting His. It is silly to think I could become so focused on my own plans and still think I was allowing God to be in control of me day to day. There is a fine balance to be found between not wasting your day/time/resources by thinking ahead a bit and truly being free to adjust to life as God leads. One sign you may need help with this is if you constantly have feelings of disappointment or failure for things 'not going as you had planned.' I have become very familiar and comfortable with things not going as I planned as I never have before. It's quite freeing, really. When you give up pretending to be in control over your life and trust God, you employ someone who is actually capable!

God is immovable. His plan will not be halted by even the most obsessively painstakingly detailed hour to hour monthly planner. Who do we think we are here, people? We can either go His way quickly, willingly and cheerfully on our feet, or we can go dragged, kicking, screaming, pouting, donkey-legs-out where He wants us to go...right? Sometimes our only choice in life is the level of resistance. I have learned that some difficulties in life are simply the aftermath of the self-created injuries from resistance. Ouch. (Note: stubborn people often learn the hard way, by painful experience.) I'm *trying* to go His way now, walking, no more donkey-legs.

I do know that without a doubt, God will continue to bless us if we seek to remain in His will, no matter how things turn out, or where we go next. I've experienced this to be true. I wish I had figured this out sooner. I hope to keep this in the forefront of my mind (...and stay off my stubborn behind).

I'll try to update as things unfold. Thank you for your prayers.

Nicole

Correction

I spoke with my doctor and he thinks I had a sort of sleep walking/narcoleptic type episode, not a seizure. After his explanation, it makes sense to me. He had some suggestions about improving my sleep cycles and doing a detox for 4 weeks to see if that helps me.

I just thought I better update with the correct info!

Thank you for praying for me/us,

Nicole

3/24 Seizure info & this mornings seizure

Apparently, this morning I had a seizure while in bed with Jim. I have had mild seizures before, but nothing like this one.

Here is info about the seizures that have affected me. The story of today's is below:

ABSENCE SEIZURES

Absence seizures cause a short loss of consciousness (just a few seconds) with few or no symptoms. The patient, typically interrupts an activity and stares blankly. These seizures begin and end abruptly and may occur several times a day. Patients are usually not aware that they are having a seizure, except that they may be aware of "losing time.

Example: ("Mom! Mom! You never listen.") I've have people tell me long stories and I cannot recall any part of later. I find myself stuck into a loop of thoughts that won't stop that are typically unimportant and it closes off my senses to what's going on around me. People think I just don't listen. It's more like I "can't" listen when that happens.

MYOCLONIC SEIZURE

Myoclonic seizures consist of sporadic jerks, usually on both sides of the body. Patients sometimes describe the jerks as brief electrical shocks. When violent, these seizures may result in dropping or involuntarily throwing objects.

(Examples- these happen most when I'm relaxed. During the day, I fight against them. It feels like an electrical pulse that jerks your leg or arm or whatever. Small motors skills are hindered by these because I can't keep steady hands or fingers because of them. Jim experiences these the most when I am sleeping and beating him up or thrashing in the bed all night. I drop a lot of things and fumble my fingers. I get electrical shocks that stiffen a limb or my whole spine, my neck, pelvis, whatever. It results in a sudden jerk for no reason)


CLONIC SEIZURES

Clonic seizures are repetitive, rhythmic jerks that involve both sides of the body at the same time.

(Jim said these repetitive rhythmic movements when I'm asleep are faster than anyone could ever do awake. Nerves are firing uninhibited by a conscious brain to slow it down. It would appear like squeezing my fists repetitively really super fast or "bicycling" my legs in bed, scratching on the sheets, etc.)

Tonic seizures are characterized by stiffening of the muscles.

(The stiffening is by far the most uncomfortable thing of them all. Drugs don't relieve it. I've had it last from 1 hour to 6 hours. It's the highest threshold of pain for me. You feel like your muscles need to stretch to relax, so you stretch, but they instantly ball back up tight as before. It typically affects my arms, legs, entire back, and neck and even my jaw. I've tried every medicine, water, minerals, etc and cannot get it to stop. It just has to run it's course. It's so painful it's made me behave desperate and crazy- going downstairs without appropriate clothing on (and not caring at all) digging in cabinets for all the drugs and supplements I could find that might help, guzzling water in case it's dehydration, eating bananas for potassium and praying for mercy for hours. It has been just pure desperation to relieve the vice grip on my body. When it's done, I can sleep a whole day.

PARTIAL SEIZURES

Partial seizures are divided into simple, complex and those that evolve into secondary generalized seizures. The difference between simple and complex seizures is that during simple partial seizures, patients retain awareness; during complex partial seizures, they lose awareness.

Simple partial seizures are further subdivided into four categories according to the nature of their symptoms: motor, autonomic, sensory, or psychological. Motor symptoms include movements such as jerking and stiffening. Sensory symptoms caused by seizures involve unusual sensations affecting any of the five senses (vision, hearing, smell, taste, or touch). When simple partial seizures cause sensory symptoms only (and not motor symptoms), they are called "auras."

COMPLEX PARTIAL SEIZURES

Complex partial seizures, by definition, include impairment of awareness. Patients seem to be "out of touch," "out of it," or "staring into space" during these seizures. There may also be some "complex" symptoms called automatisms. Automatisms consist of involuntary but coordinated movements that tend to be purposeless and repetitive. Common automatisms include lip smacking, chewing, fidgeting, and walking.

HERE IS THE STORY OF THIS MORNING

This morning I had my first complex partial seizure. I would reply to some questions, but was behaving abnormally. I don't remember all that was said or done. Jim had brought up a coffee for me in bed to drink. Tom came up blowing a whistle and playing around our bed and Jim said I stared at the wall and didn't acknowledge him at all. (Even though the whistle was quite obnoxious and hard to ignore) Willy came up to get Tom and I don't remember seeing him come in at all. Then, I asked Jim why is everything double? The fan was double, the walls were wonky and covered in green iridescent scaly wall paper. Willy had extra arms. Of course it wasn't so, but it was to me. Jim asked if he could take my coffee for me since it was just sitting on my chest. I declined and then took a sip. Afterward, it was tipping like it would spill, so he asked again and then I leaned forward a little like I would take another drink, but then just let it spill all over my chest and stomach 3-4 inches from my mouth. I had no reaction to the spill at all. Then I asked Jim, "Am I ok?" He said, "I don't know." (I don't remember this at all.) Jim went and got towels to clean me up. He asked me if he should take me to the hospital and I didn't adamantly refuse like normal, I just didn't reply. I fell asleep before he was even done cleaning me up. Then, my poor husband who is already worried to death about how much longer I have, cried on me as I slept.

A day in our lives. Central Nervous System infections make life interesting, everyday!


SOURCES about seizure facts:
Epilepsy Foundation: "Types of Seizures."

National Institute of Neurological Disorders and Stroke: "Seizures and Epilepsy: Hope Through Research."

Epilepsy Foundation: "Recognizing Seizures and First Aid."

The Latest News

I got my latest blood tests done. Some old news, some new.

Problems that are unresolved continual problems are: thyroid instability, cortisol low (from adrenal fatigue), candida high, hormone levels low, and cytomegalovirus antibodies are very, very high.

New problems are: a low platelet count and glucose level too high. Usually my glucose is too low, so I suspect glucose/insulin regulation is what the problem actually is here. Another problem of concern is a my C4a level is 12,240. Normal is 0-2,830. This is a measure of bodily inflammation due to immune system response to pathogens. It means, there are still many bacteria, viral, fungal and/or protozoal infections out of control and my immune system is working hard. This number alarmed me because I am on anti-inflammatories around the clock for pain, low dose steroids at times, an antibiotic, anti fungal and an anti-protozoal medication which are all anti-inflammatory in nature and should lower that number considerably. I wonder how high it would be if I stopped all anti-inflammatory medication?

Things to be grateful for are: my liver enzymes have returned to normal in response to liver cleaning herbs and care. They have been high since last summer and I've been working to reduce the enzyme level. Thank God! My B12 level which was very low when I went to Oregon has rebounded with my IV's and is beyond the high side of normal now. This is good! My iron levels have responded well and I'm in the normal range there too. These are all in response to treatments we have been doing to support organs and build nutrition.

Jim and I have been working hard to improve my health. We are exhausted physically, financially and trying hard to keep spiritually where we want to be despite our daily difficulties. We are a bit at a loss what to do now. I haven't spoken to my primary care doc yet about these results. My Oregon doc is a $180 appt to discuss this with, so we have held off calling him as Jim has missed a lot of work recently with the snow and FMLA days. Hopefully soon we can connect with them both and make a plan and things we will have a plan as to what to do next.

Pray for our stamina for the long haul on this for my whole family as there is no easy or fast fix, direction to go since there are multiple paths we could take, and for me personally- please pray for my fatigue, pain, and hypersensitive nerves.

By hypersensitive I mean, my eyes are overly sensitive to things like fluorescent lighting and to driving. Usually, I'm half deaf from my ear surgery years ago, but everything sounds overly loud to me now. Worst of all, my skin crawls and itches and is so sensitive that normal touch often ranges from annoying to painful. I feel like I am covered in rash and itch like mad, but nothing is on my skin. I startle easy and the lights and sounds bother me so much at times it makes me nauseated. I have better and worse days with this, but it's been a problem for several weeks now and has made an already bad situation worse. It is probably related to the inflammation I suspect making my nerves overly sensitive.

Thank you all for asking and caring for us and for all of your gifts including monetary gifts, encouraging cards with verses sent to me, your prayers, emails, FB messages and for simply not forgetting us. I haven't done a perfect job thanking each person and for each gift and for that I apologize. You have all been treasured by our family and have been an amazing example of a church family for our children, which is priceless.

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away." (Revelation 21:4)

He "shall change our vile body, that it may be fashioned like unto his glorious body, according to the working whereby he is able even to subdue all things unto himself" (Philippians 3:21)

"And of his fullness have all we received, and grace for grace." (John 1:16)