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