PANDAS is a true thief.
I'm about to get really vulnerable and transparent with you... I need to share this I need people to know why I haven't been writing lately... or doing facebook Lives..Ā Truth is, I feel like Iāve been in a deep, dark place lately.Ā I try to stay upbeat and positive, but it's not possible every day. Today, I'm actually in a good place, but I'm super worried about our finances... and itās costing me sleep and physical issues. Iāve hesitated to write this, because I donāt really want everyone to know our business... particularly those without good intentions for us, but I need to get this out.Ā
Times in my home are really tough. Ā We are broke. Treating our children is costing way more than we ever thought possible. Ā Eating right is super expensive, organic, grass-fed, pasture raised meats and produce cost 1.5-2x as much as standard... and supplements are also super expensive. Ā Homeopathy intake was $700. Ā PANDAS specialist is $1k per visit, and we have to go at least once per year. We've been to him 3 times since November... and the November visit was $1,600. MAPS specialist is $125 per visit, and we have to go every few months. OT is about $500 per month. Ā But the worst part is that I'm not bringing in stable income. Ā I'm not saying this to get any pity or anything, but I've seen us spending more than we make for a long while. Ā Maxing out credit cards. I've been watching it happen, but it's difficult to not do something you know you must do to help your children, and it feels like MONEY should never be an obstacle when it comes to what is best for your babies. Ā PANDAS has been a nightmare, and a thief. Ā It's stolen our money, our sanity and worst of all, our children from us. Ā It's stolen our hopes, our dreams for our children (at this rate, they will not be able to attend college, even if they are mentally and emotionally able, unless they pay for it themselves), our ability to enjoy the fruits of our labor for so many years... building our careers, and soon, maybe even our retirement.
I've been praying that God will help us through this. I've been told hundreds of times that God will not lead us to it, if He will not lead us through it. That He will not put a mountain in our way that is not movable... or that we can't climb. As a result, I feel that if I was meant to go back to "work", or even just take on more work that I have available to me, my children would be healed right away. The fact that we still have not found answers, and that the recovery so far has been so slow and saw-blade-like instead of a straight line trajectory (even though I know we are on the right path and things have improved), means that I'm meant to stay where I am; working from home, unable to put in 100% to my business, unable to pick up more consulting clients/hours, and unable to bring in a consistent income. So we are struggling. Ā As a result, there is not a single area of my life in which I'm not feeling it. I'm moody and overwhelmed, my kids and hubby feel it, my marriage feels it, my extended family feels it, and I've been feeling extremely disconnected from everyone and everything. I just got a second follow up that my credit card was declined to pay for my sonās daycare so that I can earn some income while heās there... but instead, I spend my time answering child related phone calls, picking up, dropping off, and venting in my blog... LOL
This is what PANDAS has done to my ability to focus on work... Kids have "camp" today (extended school year).Ā I have 4 hours to squeeze in any work that needs to be done. We just started homeopathic treatments a couple of weeks ago, along with the supplements they were already taking, and the heavy metal detox spray, to help the boysā underlying issues. It seems my 7 year old has been experiencing someĀ āaggravationsā with the treatment on some days, and today has been no different.Ā He woke me up this morning, complaining that he has to pee constantly.Ā This has been an issue for him since October... and it seems to be HIS main healing reaction anytime he starts a new protocol that is helping to heal him (it has happened with antibiotics, it has happened with antivirals, and it has happened with anti-yeast medications).Ā I am not alarmed by it, though it is frustrating and uncomfortable for him, and has led to urinaryĀ āaccidents.āĀ Weāve ruled out UTI and protein in the urine through the pediatrician who never offers any suggestions besides,Ā ābe sure he drinks plenty of fluids.āĀ And they never referred to this asĀ āPeetox,āĀ which Iāve since realized that it is.Ā On a bright note, to me, this means his remedy is working!
Peetox is an unofficial term (duh) describing the increased urine output that one experiences when other detox pathways may not be operating as efficiently as they should/could be, and therefore more toxins are being filtered out through the kidneys. Here is some additional information about Peetox:Ā Ā https://amajordifference.freshdesk.com/support/solutions/articles/6000059532-14-peetox-what-is-it-and-how-to-manage-it-while-undergoing-detoxification
I was hesistant to send him to camp while he was experiencing this, but he insisted that he needed to go, as today is Pajama Day and they are watching a movie and having popcorn.Ā So, I sent him, and encouraged him to visit the nurse if he was having any problems later.Ā I got the call from the nurse only one hour after the bus picked him up... I explained to her what is going on with him, and since he told her that he was feeling āsick,ā I decided that Iād pick him up, so as to avoid any accidents or embarrassment from him spending much of the day in the restroom.Ā I picked him up at 9:00 a.m.Ā We returned home, where he headed straight to the bathroom.Ā Not 10 minutes later, he came to where I was trying to work, and told me that he felt better and wanted to go back to camp. <sigh>Ā So, we packed him back into the car and I called the nurse to ask if he could return.Ā I brought him back, and she gracefully met me at the door and returned him to class.Ā Another hour has passed, so I assume itās safe to say that he will stay at camp.... however, camp ends in only 90 minutes and the bus will be dropping him off in two hours.Ā Ā
AND... I felt compelled to share all of this with you. Maybe I will decide to work soon.Ā Perhaps, God is leading me to my true calling here. Perhaps this is all about beingĀ āgiven this mountain to show others that it can be moved.āĀ Perhaps His intention is for me to share our experiences, our highs and lows, so that it may encourage someone else to pull through their dark days. To find answers. To heal their families. I donāt know, but I have to trust that everything will turn out for the best in the end.Ā Ā
In the meantime, I will continue to rant. I am going to filter out the F bombs in my head right now, and say this:Ā I hate Autism (it sucks, itās not some personality ādifferenceā that should be celebrated. It sucks)!Ā I hate PANDAS. I hate our pediatrician for guilting me and bullying me into vaccinating my kids against my gut instinct.Ā I hate the CDC and big Pharma for their toxic agenda.Ā I hate Monsanto or Bayer or whatever name they go by now, and the powers that be that allow GMOs, heavy metals and toxins in our food, environment, and water supply, requiring us to eat organic, grass fed, pasture raised food that costs so much more than regular crap, processed food, in order to detox our boys... requires us to buy expensive water filters to filter out toxins from our water. I hate the insurance companies that donāt pay for naturopaths, homeopaths or holistic doctors. I hate the specialists that charge $1,000 per visit, and donāt accept insurance and canāt seem to write aĀ letter (after 7 months of asking and following up) explaining my childrenāsā diagnoses so we can apply for grant money to help us to pay for EVERYTHING weāve been saddled with this year. I hate these health issues and therapists and specialists and everyone else who interferes with my ability to work or do anything that allows me to bring in any kind of stable income and forces me to take on work Iām not sure when Iāll ever be paid for.
Thank you for hearing me out.Ā My family appreciates any and all prayers you are willing to send up on our behalf.Ā Thank you so much!Ā











