Not so great, but something to look forward to

I haven't been so great. We are struggling trying to figure out the cause. Unfortunately, everything is so complicated and connected it's like trying to pick the end out of a messy tangled up ball of yarn. Your prayers are appreciated.

We have something to look forward to this April we are all excited about. We haven't ever been on a family vacation with all the kids. Being sick has made that not a priority or even an option. We have a 16 and 17 year old now and it won't be long before they begin leaving our nest. Grandpa and Grandma gave the kids and us some money for Christmas and we decided to pool it and buy Silver Dollar City season passes and go together. Lucky for us, this year anyone born in 1976 gets a free season pass from SDC! (Me!) Also, each season pass comes with several free passes for a day for a friend. So, we were able to buy only 4 season passes and we will be able to get the other 3 people in our family in for free for 3 days. 

So, we reserved a cabin for 4 nights that sleeps 8 and is backed up to 400 acres of Ozark woods between SDC and Eureka Springs, AR. It's a house, not a condo, so we will have space for us, no annoying neighbors and we will be able to cook meals for ourselves there. Interestingly, there were issues getting the rental agreement and through calls to the owner, we've discovered the cabin owner is sick like me, is also a Christian and he is from Oregon! He's excited to meet us and we plan on visiting a bit when we go. 

We all needed something to look forward to and hopefully everything will work out so that our family vacation is as relaxing and enjoyable as we hope and that I'm well enough to go.

Thanks for caring about my family and praying for us. 

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