Almost Christmas

Since the last message, a few things have happened. First, a day or two after that post I found out the dry mouth problem I had been having for weeks was kidney related and was diagnosed with Diabetes Insipidus. That is not blood sugar related, but acts the same as far as symptoms go. Basically your kidneys don't retain water and minerals and concentrate your urine like they should so you dehydrate and it's pretty miserable feeling because no matter how much you drink, you can't alleviate it. The same day, I started a medicine for it and it helped right away. It slows down your kidneys so you can catch up and stay hydrated. I never knew how torturous dehydration felt until this. 

One week went by on that medicine and around Thanksgiving I began feeling bad again- sluggish and tired and just blah. Over night, right after Thanksgiving, I began having trouble breathing. It was hard to breathe anytime I climbed stairs or did anything physical. The day after Thanksgiving, we took my nephew to the airport at 4:30 am and I was really feeling terrible and wishing I hadn't gone. I came home and rested and when I got up, my breathing problems were much worse. I was struggling just sitting on the couch. I tried to get a hold of my doctor, but nobody answered. I told Jim if it got just a little worse I'd call an ambulance because I was really struggling to breathe. So, we went to the hospital in Lawrence. 

To our surprise and relief, we were helped by a familiar face, Dr Caleb Trent from our assembly. It is so nice to avoid the inquisition about spousal abuse and substance abuse! We did blood work and it came back that I had low blood sodium, which meant my blood was too diluted and the med I was on was making me hold onto too much fluid. I went off of it and within 24 hours I felt 100% better. The problem remained though that without the medicine the old symptoms of Diabetes Insipidus would return. The doctor said to go back on that medicine with a lower dose within 5 days. I really didn't want to take that medicine again with as terrible as it made me feel and with it taking 12-18 hours to wear off. So, I prayed that I wouldn't need it. It's been almost a month now and I haven't had to take it again. I get dry mouth from time to time, but not at all like it was before where it can't be alleviated with fluids and electrolytes. I pray it stays this way, because I really don't want to go back on that medicine again. As bad as the dry mouth was, the reaction to the medicine was much worse and probably one of the worst I've ever felt. People who know me know I won't step foot in a hospital unless it's absolutely the last straw and once they can't do anything more for me, I'll check out and go home. I'll die at home, thank you!

So, since about a week after Christmas, I have been feeling pretty well. It's been all better days since the hospital. I have made hundreds of bars of soap, had a very busy season filling orders with our little soap business and have enjoyed being up and about and fairly normally. We decorated for Christmas and Thomas can hardly contain himself without understanding of which morning is actually THE morning. He began asking for "ho-ho" on the first day we had flurries. Christmas is more exciting for all of us because of the two little ones excitement. 

I still keep praying for complete healing- I don't care how or what it looks like. We aren't doing anything new other than praying more diligently for healing. We have literally tried everything modem medicine and traditional can offer. We serve a Creator God who can heal and healing me isn't outside his power. 

Oh one last note- almost 2 weeks ago William got chicken pox, he is well now, but we are awaiting the breakout of more kids. We don't know about Shreya's history and possibly Hannah had a mild case as a toddler but we aren't sure? Despite exposures nobody else has gotten chicken pox as youngsters. We could potentially have 1-4 more kids with pox by Christmas. So, pray for us since these kids are all older kids ages 9-17 and that can be rough. William had a pretty bad case, but fortunately no complications, and our charcoal and clay soaps dried up the blisters fast. He also took an antiviral on the doctors recommendation after seeing his 3rd day breakout.

Thank you all for your prayer and support and random anonymous gifts. We know where those come from too- our Savior, Christ Jesus, whom we are about to celebrate the birth of. I hope you all have a blessed Christmas. 

Nicole, for the 

Gallagher family 

Been awhile, I know

A few have asked, so here is an update. I've been all over the place. I had a few weeks of good health after treating Babesiosis this fall. I've not felt that well in years and years. If I could maintain that, I would never complain again. We got pretty excited that it would last, I'll admit. That made the subsequent low feel worse. I keep hoping to post, "finally I'm well and healed" but I can't, yet. 

I'm hopeful, but also trying to live as well as I can considering my current state. We are still running IV's often to maintain and have done 4 rounds of Babesiosis treatment. I'm going to the doctor today for some very annoying symptoms- one of which is that I have such a dry mouth it is driving me crazy. I never knew how torturous it could be to have a dry mouth/throat. I drink and it doesn't help. I've taken minerals and rehydrating IV's, but it doesn't help. I just pee more. So, I am desperate for a solution to this, and a cause as well for that matter. 

So, no radically new news good or bad. I've been worse, been better. I am hoping for a miraculous healing. I don't care how or what, but just a gift from God- my health back. Is that too much to ask for? The Bible says we can ask for what we want and He can do above and beyond all we can imagine. So, I am asking. I'm careful asking though because if it isn't the Lord's will, then I have to be able to live with that too. It's all so confusing and discouraging sometimes.

I'm still making and selling soap. On a good day I crank out as much as I can. Then, sales trickle in. We have many ideas of ways to sell more and new items to make and things we can do but we know that the reality is some days I can barely wrap and package orders and I don't need the stress of having huge commitments to fill large orders or make tons of soap regularly. We are letting God control this as much as we can. Orders trickle in and I've been able to keep up and we are happy for that. 

The family is doing well and hanging on. We have things we have had to let drop because of being sick and things not taken care of around the farm, but that's the way it is when you have to prioritize and then let everything else go. Perpetual survival mode isn't without it's issues, but we are still very blessed, no doubt. We have had many little and big opportunities to see how God moves people and changes lives. You notice more of this when you are doing less I think. We have been on the receiving end far more than the giving end. Although I would love that to be reversed, I am so grateful for it all.

Well, we hope you have a relaxing holiday spent with those you love. Thank you for praying for our family.

Abiding

I get pressured "advice" to put my kids in public school, send the little kids on the handicapped bus everyday and other such suggestions that seem to make more sense on the outside, considering my health. However, we don't make family decisions based on what is easier, what makes "sense," or even what we personally want. We aim to line our decisions up on these important things with God and how He wants us to live. Though we are imperfect in this, we do try, and aren't afraid to go against the grain to do it.

We've had the roughest year last year with homeschooling in all of our 11-12 years including the year 6 of us were diagnosed with Lyme. All 3 big kids have struggled and fallen behind some this last year for many reasons, including their own personal responsibility, but ultimately because I've been too sick to follow up and do what I normally would do to keep them all accountable. My 2 littlest would be in kindergarten now, if I wasn't struggling with my health and could reliably do more than just cook meals. From an outside perspective, public school may seem the solution. But, it's not the solution for us unless we are led to it by God, not simply practicality. When we have weighed that option, all indicators scream "NO." We have to answer for the stewardship of these children. So, we have to follow God's lead. 

I love this devotional, especially the last paragraph. We sometimes do feel that while other families are going to ball games, enjoying family vacations, and in other ways "living" normally, all we have done for years now is survive and wait for the next turn of events. The reminder of promise for simply abiding in Him is encouraging today. There are promises for this difficult life and the choices we've made that haven't been the easiest. It's not for us to choose our paths. I'd never have learned this lesson had I not been so sick for so long. There have been so many lessons...

October 2, 2013 Abiding “And now, little children, abide in him; that, when he shall appear, we may have confidence, and not be ashamed before him at his coming.” (1 John 2:28)   There is nothing sophisticated or subtle about this Greek word,meno, used many times in the New Testament. The various shades of “remaining” or “staying” are easily understood from the context, and always focus on a consistent and even permanent situation.   So it is in our text. The Christian is expected to “stay” in a relationship with the Lord Jesus—implying both a permanent relationship and a “normal” relationship. We are to abide in Christ so completely that we would be like a branch growing out of the vine—thus making “fruit” possible (John 15:4-5). We are to continue in His Word so thoroughly that our prayers will be in synchronization with His will (John 15:7) and our behavior will be in synchronization with His commandments (1 John 3:24).   The steadfast “dwelling” in Christ promises to produce a confidence in our eternal relationship—the word choice especially emphasizes freedom in speaking, an unreservedness in speech. As Peter freely spoke at Pentecost (Acts 2:29) and the disciples received boldness to speak the Word of God (Acts 4:31), so our “plainness of speech” (2 Corinthians 3:12) in witnessing sets the stage for our “boldness in the day of judgment” (1 John 4:17).   Ultimately, of course, the lifestyle of abiding in Christ while on this earth builds the sanctified relationship with Christ that we are to enjoy for eternity.   “Cast not away therefore your confidence, which hath great recompence of reward. For ye have need of patience, that, after ye have done the will of God, ye might receive the promise” (Hebrews 10:35-36). HMM III

Pray for the little kids

Too lazy to type it all- here is a pic of my FB prayer request:

Rough.

Another rough day happened suddenly Monday when I was in KC with two kids and I ended up stranded because I couldn't drive us home. It was another bout of meningitis. It was a horrible evening/night/next day. Man, that is miserable. It's as miserable as I've ever been, ever, through all of this.

Still waiting for my medicine to come. It went through USPS sorting in Mumbai on the 24th. 

Potential bad health news with Shreya. Waiting on blood work for her. If that is suspicious, MRI, maybe surgery. I'll post more if the news is bad news.

Thanks for your prayers.

Update, prayer request, thank you

My mom flew in to help us out, a few days after a really bad episode of viral meningitis. (Not contagious, don't worry) Not sure how long she will be here, but I'm glad to have someone to fill the gap because I need naps every day on top of 10-12 hours of sleep at night right now. This battle is exhausting me. I hope this isn't too rambling, but here is the latest:

My heart rate is still in SVT if I don't take a beta blocker. The BB slows the beating down but I am noticing arrhythmia's and sometimes just feel "bad" from my heart acting up. I'll stay on the BB until the SVT stops. Hopefully it will stop when the infection I am dealing with goes into remission or is cured.

We got bloodwork back and Babesiosis is worse now than it ever has been. The reference range is 1-10 and my number is 39. Doc called it "sky high." So, although the treatments I've been doing has kept Lyme itself at bay (haven't had Lyme symptoms for a long time, just co-infections) and it's boosted my immune system, it doesn't kill Babesia. Darn.    

FYI: Babesia is a protozoan that infects red blood cells. It replicates within them going undetected by your immune system while wearing your cell like a "coat" then breaks out, destroying RBC's and infecting more. My body is working OT to replace ruined RBC's and clean up the mess of broken RBC's. They can clog the liver, cause dangerous blood clots, etc. So far my bone marrow is cranking enough RBC's out to keep my blood counts normal, but that is why I'm also very tired. They call this infection Midwest Malaria. It's symptomatically the same, drenching sweats, fever, pain, extreme fatigue....treated with the exact same medicine. Yes, it can kill you.

So, back to the rest--we are adding an antibiotic for Babesiosis to my treatments- (actually it's a protozoan, not a bacteria, but no need for technicalities.) The problem is Obama, in his infinite stupidity, has removed or tied up many of the drugs that treat Lyme and co-infections so sick people can't get them. The drug that I need, CoArtem is one of these. It disappeared from the US market about this time last year when I went for my second round of it. I was unable to get any and finish my treatment a year ago. So, here we are again. At the time, I had just met my Oregon doc and had hoped the other treatments would take care or Babesia too since we couldn't get anymore CoArtem, but it definitely has not. It sure makes me wonder where I'd be if I had been able to finish that treatment last year with CoArtem?  I can't worry about that now.

The good news is, I was able to order some online through Canada, from India, but it will take weeks to arrive. I'll need to do two rounds of CoArtem, test again to see if the # is dropping, then do 2 more rounds and then test and assess what to do then. That will take 11-12 weeks. The treatment is very rough. It was the hardest treatment I've done for these diseases, ever. It causes extreme headache, extreme body pain, fatigue, nausea, sensory sensitivities etc. I'm not looking forward to what's coming for me, but I have no other choice. This disease can kill people and it nearly killed me last year.

Unfortunately, for some reason, Babesiosis flares also cause an opportunistic viral infection in me that goes to my spinal fluid quite fast. I'll be up and about and mere hours later, in bed in agony from the head and eye pressure from the virus in my spinal fluid. Nothing helps instantly including very strong pain medicines. I had a really bad episode a week ago today with this viral meningitis and Jim thought I was going to die and I don't mean that in a melodramatic way. He really did. He wouldn't leave my side to eat or anything because he didn't want me to die by myself. It was really scary for him. I wasn't scared to die at all, but I was scared the pain wouldn't stop or that it would get worse. I was at my breaking point with pain for 12 hours. I was delirious with pain and don't remember much except that we tried everything we had to relieve some pressure from my head- for hours and hours. It was more horrible than I can really describe. The pain finally receded and I then slept for 2 days. My mom came Sat and I was "ok" or stable at least again. Thankfully she missed that.

Until my meds come from overseas, I'll be dealing with this with the arsenal of IV's and natural antiviral things I have. (Prescription antivirals don't work for me, we've tried them.) I hope I can keep the virus at bay and the CoArtem comes fast. Meningitis pain is the worst pain in the world and it makes all of my senses overly sensitive. All my senses were/are heightened and agitated. I am still oversensitive to things right now although not even close to what it was last Wed. I haven't made any soap because I can't take the scents. I can smell things I don't normally smell and can smell things far away, like when the kids leave the door to the back room where my soap is open. PU!  It makes me nauseous actually. The doc said my olfactory nerve is raw and agitated. I hope this goes away soon or Arlice will be glad she's stocked up with a lifetime of soap because I won't be making more!

Anyway, the CoArtem will make me worse before it'll make me better, but it has worked for me before. So, we are hoping this time around it'll do the same, but even better now that we have better detox and immune support systems in place through my Oregon doctor. We always hope. What else do we have if we have no hope?

Thanks to all who've asked, prayed, given my kids rides and shared resources with us. If you want to know what specifically to pray for- pray that my medicines come fast, that I can tolerate the die off (the bugs are just as neurotoxic dead as alive), that I won't have any more meningitis episodes and that the medicines will help me return to motherhood/wifehood the way I would like. 

However, if wellness isn't in store for me this side of heaven, pray that the Lord would equip me well enough to bear whatever is to come. This, I believe, is the correct way to pray for the things we want, and this verse is the example I am trying to live by:

Luke 22:42-43

Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but Thine, be done. And there appeared an angel unto him from heaven, strengthening him.

I've seen my angel of strength come in various forms when things didn't go my way. The Lord doesn't leave the people that love him destitute and even Jesus didn't get his way. He molded his will to the Father's. 

Thanks everyone 

Nicole 

Today

Had a good evening with a low heart rate and BP but this morning, back to high speed pulse, sweating and high BP. Guess I'll be seeing the doc next week.

Thank you and good news for a change

My heart rate finally dropped this evening from 125-200 down to 70-90. BP dropped down to 100/60 which is my normal. Hallelujah. I took potassium pills, ate bananas and took Propranolol (a beta blocker) 3 times between yesterday afternoon and this evening. I don't know what did it, the pills, prayer, or all of it, but I hope it stays down and I don't need the beta blocker permanently, or a pace maker, or anything else! I wonder if something was causing Hypokalemia (low potassium) that needs to be addressed? Seems that the Propranolol did nothing until I added the potassium pills this afternoon on my own accord. It went down fast after I did 2 of those. It could be I just lost too much K sweating sometime this summer. I hope so. 

I think this thing has been something going on for some time and I had been ignoring it, it only just recently got worse. I can think of a few times in previous weeks where I felt really sick, dizzy and nauseated from the heat and had to lay down. My heart keeps racing when I come up two flights to my bedroom and sweating (when everyone else is fine) has been an issue for quite awhile. I have become a pro at ignoring symptoms to try to live as active and normal a life as I can and I try not to complain. 

I was told yesterday I may have Sjogren's Syndrome, an autoimmune condition causing dry mucous membranes that I've battled with for weeks. My mouth is less dry now, so hopefully not. It may all be related to the low potassium which may be acute or may be a symptom of an issue I'm not aware of yet. I'm hoping it's not a symptom of yet another problem.

For now, I am just happy I can breathe normally. I couldn't get enough air through my nose to keep up with the demands of my racing heart so I had to breathe through my mouth even when eating and talking- so annoying.  I was huffing for air just sitting doing nothing. I was sweating out my clothes doing daily tasks in an air conditioned house. We turned the ac down to 72 and everyone was freezing and I was still dripping. I was really miserable, and I am much less so now. I'm just exhausted. It's like I ran a marathon, only everyone that knows me knows I never would do that!

I really had a hard time keeping a happy attitude in so much misery and with possibilities of a new auto immune disease, heart problems and IV antibiotics being thrown around by both my doctors. I really was wishing for a way to throw in the towel. I don't intend at all to sound suicidal (I am not) but I was close to the end of my rope. I asked Jim what happened if I quit the IV's and treatments and just give up? He was no consolation to me when he said I'd probably just be more debilitated and miserable, but not die. Probably he's right. Only in the Lord's time. 

A couple of posts ago I said "could it get worse?" Then, it did. How about, can it get better?! Maybe I asked the wrong question last time!?

Thanks for your support and prayer. Sorry for my stinky attitude. I don't know what the lesson is here, but I think I got an F. I'm not on anything to stabilize my mood or help with depression. It's all au naturel here and sometimes it's rather ugly. 

Nicole 

Not good news

Been sweaty and sick feeling for a couple days. I took my BP and pulse and was surprised to see them both very high every time I checked them. Went to the doc- did EKG- pulse is 150-160 beats per min on avg and I have super ventricular tachycardia. He gave me a few things to try to get my heart back into normal sinus rhythm. If it doesn't work, I go back in 24-48 hours to see what's next. 

That's the newest news.

Sick of sick, tired of tired, trying to count my blessings anyway

Isn't that the hard part of life? 

I remarked to Jim today how incredibly hard our lives are right now. We are both so exhausted. However, our problems are polar opposite of each other. I sleep 12 hours and I am still was so exhausted from being sick that I've done little but IV's and sleep the past two days. He keeps taking a long route to Tulsa for extra money meaning he nearly maxes out his DOT hours and goes to work on 5 1/2 hours of sleep. His little bit of time (2-3 hours) at home is spent helping me and running my IV's. We talk about changing our lifestyle, moving, something to take some pressure off, but we don't think it's possible right now to sell our house. Plus, the house we'd need now and the house we will need in a short number of years will be totally different as our older kids begin to grow up and move out. So, we have to just wait it out.

It seems to me that nothing in life has ever gotten easier despite the prevailing myth that "after this or that" surely the next stage will be easier. Definitely in our particular case, life has increasingly and rapidly gotten more complicated and difficult with each of our 17.5 years of marriage. I really can't imagine it getting harder than now. Jim assured me earlier that, "it will get easier." Then, he added, "in heaven." I admit my heart sunk. Yes, I rejoice and believe in heaven, but I can't imagine 50 more years of this first. Does life ever get easier? 

Ok, pity party over. (Please don't post this one on chapel channels.)

Nicole 

Relapse

Bad news report. :( 

I've been feeling slowly worse and worse the last few weeks. Today, I finally decided this isn't the normal waxing and waning of my energy and health. It was always wishful thinking this is "just a bad day" and not a turn for the worse, I suppose. So, this afternoon Jim took me to the doctor.  

Doc confirmed I have Bartonella again. I'll be on new prescription medications (2), an herbal protocol and IV's for it. It's a frustrating thing because I have treated this countless times over 5 years. I mean countless times too. Nonstop meds for years. It really reared up and knocked me down fast this time. 

Jim missed half of yesterday and all day at work today to help me since I wasn't able to drive. So, we are now preparing to throw everything we possibly can at Bartonella this time and we hope it helps without killing me first. Doc encouraged me saying that the patient he knows with the worst Bartonella he has ever seen did the scripts + herbs and has finally become victorious over it. He said to do as much as I can tolerate. We picked up the prescriptions just now, herbs were shipped from the Oregon doc today and IV meds are on their way too. The battle begins...

Keep the ticks off folks. Be cautious. Protect your health. 

Thanks for praying for us. Thanks for the blessings (whoever you are) that have helped pay for my medicine as well. God is always good. Always.

Nicole & family 

Been another month!

It's been a month since my last post. I was holding my own pretty well, but I have regressed slightly recently. My oxygen tank ran out, which is needed for one of my treatments, and it ended up causing a 10 day lapse in treatments. It only takes a few days and I feel it that I've missed them. So, the IV treatments help me for sure, but there is still a long way to go before I'm "healthy" because I can still lose ground easily and quickly.

I've done a couple treatments with my refilled tank, but I'm out of other supplies now. I've ordered those supplies today so hopefully it won't be long before I'm back to a normal treatment schedule again and hopefully I can improve quickly once I'm back on track.

I haven't scheduled a trip back to Oregon yet. I'm going to need to go, but I am stalling. It's hard to do in so many ways, so I'm not looking forward to it. Being away from my family, the treatments being physically exhausting, treatments making me sicker before better, the expense.... I guess I am going to pray that when the time is right, it'll be clear I should go and everything will fall into place for a return visit. Also, I hope that it isn't clear I need to return simply because I've become very sick again! Dr V was clear to return before I lose too

much  ground if I take a turn for the worse again.

Since returning home, I've busied myself making and selling soap to help pay for Lyme treatments both at home and hopefully for another Portland visit to continue treatments there. It was a bit of an experiment to see if my soap would sell publicly. I've made it for my family for years but haven't sold much. So far, I've been really encouraged at sales and response. Many people have been kind enough to try it and then tell their friends and family and orders are slowly trickling in almost everyday. I've sold out of some initial varieties and I have spent the last two weeks cranking out soap batches nearly every day to restock it all. It's all drying now and soon it'll all be back on my website. Thanks to all who have tried my soaps! If you're interested and haven't seen it, you can read about my soaps and see what I have available currently here:

www.twowildhares.com

More soap varieties are coming soon as well as lip balms and several other hand crafted items as I find time in between my daily family duties to work on these other things. As long as God continues to bless this particular effort to pay for my treatments, I'll keep working on this business.

All in all, I have held my ground at home this time better than the last time I returned. So, a measure of my health gains have become permanent. I haven't had to take antibiotics (pharmaceuticals anyway) since last fall which is a long time for a Lyme person. A couple of my treatments are antibiotic, but naturally so, and this has helped me to be able to improve gut health. This time last year, I was starving to death from malnutrition because my gut flora was so terrible. I've gained 20 pounds since August 2012!

The family seems to be doing well. We are enjoying the summer so far. Our cow Mavis had a calf and we are milking her this time. We didn't milk her during her last calf and Waffles freshened during the winter and we skipped milking her as well. I wasn't up to it health wise and this time it's going well and I am not too worn out to do it, so I am glad for fresh milk, mozzarella, yogurt and milk for my soap!

I am grateful for these many small improvements and I can hardly believe that in June 2012 I was in bed 16-18 hours per day and was still so exhausted I didn't do anything but move to the couch, then back to bed most days. I didn't know a person could be so tired! It is literally almost dead tired. Although any of us can die at any moment, it seemed as though I would just not wake up almost every single time I went to sleep. Jim is relieved not to have to check to see if I am dead every night when he gets home. More than once he thought I was dead because my breathing was so undetectable and he was relieved when I stirred suddenly. Poor guy!

The things still bothering me are: full body pain still necessitating pain medicine to make it tolerable, sleep disturbances (awake from 2-5am/or nightmares) overly sensitive nerves that make me feel jumpy at times, overly sensitive skin that makes IV's more painful than they should be and still some fatigue, although not like before. 

If you would pray for those health things, the continued good health of my husband and children and discernment about when to return to Portland for more treatments, we would appreciate it. 

Thanks for being concerned for us and praying for us. 

Nicole

Still plugging along

Over the halfway mark. Feeling pretty good. Very thankful I can do this. We are putting into place new things to add to what I do at home to help maintain.

We enjoyed a quiet weekend at Rockaway last weekend- just me, Terra, Kathy and one little one- Rafael. We didn't even touch the sand which seems like a shame but we did what we wanted! That was mostly watch movies and crochet. :)

Doozy

Well, today was the best day ever, until the end part. I went from 6 am to 3 pm not needing ANY pain medicine, which is a long time for me. Yay! I tolerated the 3 bags of IV fluid meds well, no nausea, no headache, then I was going to get two quick shots before I left for pain relief in my neck and migraines. Little did I know what all that entailed. The treatment is called prolozone and has kept people from needing invasive disc and cartilage joint surgeries. Amazing stuff. This may not sell you on it though...

It started with 6 numbing shots, which should have clued me in this wasn't going to be quick and painless, right? No! I'm an optimist when it comes to my health, don't ya know?! I wouldn't still be alive and trying if I wasn't! Then, he stuck a needle deep down between my vertebrae in my neck and filled the area near my nerves with a large volume of fluid full of I don't know what all-- folic acid, a mild steroid to keep from excess inflammation from the shot, and several things I don't remember now followed by ozone gas. The cocktail heals tissues and draws blood to the area for pain relief and healing. The first shot on the left made me feel a little numb in my arm and warm, but ok. The second on the right made me feel numb, then super hot, then dizzier than I've ever been in my life and like I was on some kind of drug. I think the fluid pressed on a nerve to my ear because I could audibly hear the fluid going in, the bubbling of the ozone gas, then my world flopped completely upside down. I had no equilibrium at all.

When it was over, I knocked a cup of water over trying to move it and threw up until I was dry heaving and sweating profusely. When I finally realized opening my eyes made me cascade into a whole new round of nausea, I blindly climbed my way up on the exam table and tried to will the dizziness away. Someone brought me a blanket and turned off the light and I laid there for an hour or so, I think, and wondered what I signed myself up for?

It passed though and I'm better now. I'm 2/4 on throwing up after treatments. Not fun. I think I felt progress today before that last treatment, which is fast. Last time it took 1.5 weeks before I noticed anything positive. No pain, no gain, right?

Super exciting good news for me is that my doc wants to carry my soap in his clinic. He wants activated charcoal and bentonite clay soap for his patients to aid in detox. I am so happy! His office workers all love it and want some too. So I need to get my website done and more soap made. If I could apply sales of this soap to defray treatment costs...ahh what a blessing. Something I love to do for something I desperately need and can't afford to do. This could be really great!

P.S. Isn't my niece hilarious?

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)

Phone visit with Dr V, Jan 21, 2013

I had my check up with Dr V today via telephone. He asked me to consider getting IV chelation done in Wichita three times a week or come back to his office for chelation (and other treatments) to reduce my toxic metal load (among other things.) He said he'd like me in Oregon for 8 weeks, but I just can't see how either Wichita or Oregon can be done either financially or practically speaking. IV chelation cannot be done safely at home. So, I convinced him to give me additional things to try at home first.

He wants me to do a lot more system support via supplements, add several things to my IV's plus increase their frequency, stay on the antibiotics Dr. B has me on and report back to him. Adrenal fatigue and hypo-thyroid are big issues as well as the MTHFR gene that is causing my natural detox body processes not to work. My and Babesia load is high, CMV virus is beyond the reference chart and Candida is very high as well. In a nutshell, these are the sources of all my problems.

The new plan means IV's everyday, except Friday, since I have to take Jacob to get his allergy shot in KC and re-stock house supplies and groceries that day. I am to take a pile of pills three times a day so complicated I made a program in my phone to remind me! I took 25 pills at lunch. The last 6 pills were hard to get down. Over half of them are the largest size capsules they make. Blech. Six days of IV's a week are debilitating because they take a long time, plus several of them wipe me out physically so I have to nap for hours afterward. Several IV's have to be done when Jim is home so I have a driver and an adult available should a problem occur so it puts us on a schedule.

I'm working on ordering the necessary supplies to put the new treatment plan in place. The worst part is giving up more time and more money that I'd prefer to spend on my family for these diseases with no guarantee really that I'll be better for it. I am reasonably sure both doctors know how to help me though. It's a perplexing thing to know the Lord can heal me without any of it and then decide where to draw the line on how much treatment to do, how much money to spend and how much hope to put in any of it. Is there an easy answer to this?

I have to praise God because we have experienced several very timely helps in the forms of food, monetary gifts and encouraging messages that can only be from Him moving the hearts of people all around us. This is not to mention the many personal lessons and re-prioritizing that inevitably happen when health issues demand so many resources from a family. My only goal is to be able to be well enough to be a mother and wife. I used to have many other ideas of things I wanted to do with my time, none anywhere near as important as those. As complicated as my health and treatment plan has become, my personal wants have become refreshingly simple.

Thank you for caring enough to read.

January Update

Well we made it through all the holidays and birthdays at our house. We kept it simple and as stress free as possible. In fact, we just took down our tree. Everyone knows the Christmas decorations never survive past Dec 26th at my house unless something is wrong. :)

As far as my health goes, it's no better than November, maybe worse. Liver enzymes are still elevated, albeit maybe a bit less. Pancreas is holding on. Haven't had a flare up in a little while. Thyroid is still out of whack. I feel like I've gotten more and more tired and I'm slowly creeping back to the way I was before I went to Oregon. I don't know what can be done about it more than what we are doing. Adrenal fatigue is just difficult to reverse alone, much less with multiple diseases continually sapping the life out of me.

I had a flare up of Bartonella and Babesia and in Nov/Dec sometime and experienced the worst night of my life. I was only semi lucid that night and clearly remember the pain, but I don't remember that I said or did anything. I thought I suffered quietly in bed save for some uncomfortable flip flopping. Apparently, that wasn't the case. I thrashed wildly about even accidentally kicking and hitting Jim. I bolted suddenly out of bed crying out and got up an wandered the house moaning and crying out in pain. I remember taking various pain medicines, muscle relaxers, sleeping medicine, minerals and water for cramps and powerpaks over the long hours thinking something would work to calm my cramping muscles, but nothing did. I have had these cramps before, but usually minerals and water and/or a muscle relaxer calms it within an hour or two. This time it went from 10pm until 6am nonstop. It's so agonizing I could not think clearly at all and as I said, I have a partial amnesia of that night. I remember thinking it was worse than childbirth pain and funny thing was Jim said later that it reminded him of childbirth too. Too bad we didn't get a baby for it this time. :) Jim of course didn't sleep either and he read from Hebrews aloud to me and prayed the whole night for me. I think he aged a few years from worry that night.

After this episode, I went to the doctor and he surmised Bartonella and Babesia were fully active and wreaking havoc, so I began a treatment for them that will last a good portion of this year. I only hope it works this time. We have succeeded in beating the diseases back, but never have I been fully cured of it. Bartonella must be treated first because it's immunosuppressive and keeps you from successfully treating Babesiosis. Babesia is like malaria and is treated with precisely the same medication. The symptoms of Babesiosis are terrible and it's hard to endure it while we painstakingly try to gain ground on Bartonella. They cannot be treated simultaneously. I have done about 40 days of Bartonella treatment so far, In a couple more weeks we will see how things are and whether to keep on this medication or switch to treating Babesiosis.

Jim has taken on a lot of my responsibilities and the kids have had to do even more to help keep our household running. I have resigned myself to do as Jim has asked and sleep when I am tired (against my true wishes) and reserve energy by letting go things that don't matter. My house isn't as clean as I would keep it and I can't do certain things with the kids like I would prefer, but if I don't give my body a chance to heal, I won't be here at all. This isn't the life I would choose, but I am certain there is purpose in it. Obviously, God's ways are not our ways. I don't mean to sound unhappy either, because I am not.

The insurance trouble goes on. The money they paid before they stopped payment on the treatments they had pre-approved they are now requesting a refund back on. They want us to pay them back by the end of the month. The frustrating thing for me is that had they said they wouldn't cover any of my treatment in Oregon, I would not have spent that money to begin with. They claim they should not have approved it but I made decisions to get treatment because I was told 70% would come back to me and indeed it did at first. They didn't say otherwise until I had left Oregon. I have to keep reminding myself God knew this all along. Good things came from those treatments although I would not have chosen to spend so much money there. Jim and I both agree had I not gone I could very well be dead now. I have to remind myself all of this to let it go.

I am doing IV infusion treatments at home- several times a week. My vitamins and minerals are sapped fast and I can feel it when I need another bag. My body gets more twitchy and tired as I run out of B vitamins and magnesium. I also discovered IV magnesium alone to be a fairly powerful pain reliever. I am guessing because it's a vasodilator. Of course I can't overdose it, but had I known this that terrible night, I would have put a magnesium bag through my port. I expect the IV meds are helping because I decline between treatments but it's not enough alone to cure me. I am hoping the IV support alongside the antibiotics may prove to be the key since I have only previously done one or the other but not both simultaneously. Who knows through. Truly, I mostly am just trying to live as long as I can. I don't really expect anymore than I'll be fully well in this life.

The kids are doing well. Tom and Shreya are blissfully clueless that other Moms don't do IV's at home. The other three forget and have to be reminded at times why our lives are different than they'd like. We don't run around or do as much as we once did, but in some ways it's a blessing. Instead, we play board games, enjoy cooking a meal together, talk, look forward to Downton Abbey on PBS to watch with the older children, have more time to watch and crack up at Tom and Shreya's ridiculous antics and Jim has started reading aloud to me everyday. It's the highlight of my day honestly. He is reading a book about Saint Patrick to me now. I sew sometimes when I can. Some days just making a meal or two is about all I can muster to do. Friday is my busy day when I have to drive to Kansas City for Jacob's allergy shots and get my groceries. I have a steroid I take that day every week, or any other day I leave the house for long. I like to joke that my family eats so much that I have to take steroids to be able to do the shopping each week for them. Hehe

For those of you who are well and running all the time as I once was, slow down a little. There are things you miss when you keep too busy and too distracted to notice the simple things. Do more of the things that make memories. If you don't know what that is, ask your kids what they remember most fondly...then do that.

Thank you all for your prayers and support.