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.