B started writing this post on the 7th & never had the opportunity to finish it:
These are just a few of the words that describe what this past week has been like. In May of 2015 we were nearly at our end and God stepped in! Praise the Lord for His provision. Over the course of the last two years since then Princess has been increasingly getting better and has also had the opportunity to decrease her Pharmaceuticals significantly. In fact one of the meds that we have been on since 2008 we have now reduced by 91%.
So in short, things have been good. Now this does not mean we are seizure-free, but it is sure nice to be able to go three, four, even five days without a seizure. One of the hardest things about our wean/taper is knowing when it is safe to go down or is it even time.
This is where he stopped & so I'll try to pick up where he left off.
We have tried to follow the wean schedules that others have recommended on each med. One med, I have reduced by 83% and based upon what we've learned, the remaining amount will take at least a year to get off of or I could experience worsening of the symptoms, seizures, etc. Thank you, man, for creating a chemical that doesn't control the seizures nearly as well as a plant that God created, but trying to come off of it causes many seizures!!
So, back to the other med that I've been on since 2008 & decreased by 91%! You can come off of it a bit faster than the other one and so we've tapered off of it for the last two years, as well!! We have such a small amount remaining that we're having to have it compounded b/c they don't make the dose that small unless we get the children's liquid which has a ton of known seizure triggers in it. We are having to pay out of pocket for it as insurance won't cover it being compounded either. So, we've been praying for God to do big things! Thus, through much conversation and prayer, we decided that God was doing a big thing & it was time to just stop it cold turkey! I only had three seizures in the first five days that we were dropping it. That is to be expected. Then, day one without it, I had two seizures, then four, then five, then six. So, we added some meds back afraid that we had gone down too quickly. Over the next four days, I had 54 seizures!!! A total of 74 seizures in the first seven days of the month. The seizures were bad, many lasting upward of 20 minutes. B tried every rescue that we know of and none worked. So, we went back to the last dose of the med that I was stable on...I then went five days w/o any seizures.
So, we thought we were on a roll! Then, I had nine seizures in one day this past week. Not to mention that was the day that B started feeling bad & had a fever of 102 & could barely move. Mom had to come over that morning and get Miss P to daycare as neither one of us could really move. So, I'm at 84 seizures for the month of March and we're only at Day 18. The last time that I had this many seizures in an entire month (not just half of it) outside of May 2015 was September 2013. So, needless to say, it's super frustrating!!
Miss P actually got sick the Wed before & went to the doc & they said she had strep, but didn't have to do the antibiotic if we didn't want her to...we went to the pharmacy and by the time we got inside, she was dancing & singing. She never had a fever & so she went back to school the next day & was fine. Then, Tues night/Wed morning of this week, B got sick & he's been fighting it ever since with a terrible cough! Then, Thursday evening Miss P started to cough and it turned in to both of us being up most of the night (mainly B, though) with her throwing up each time that she coughed. Praise the Lord, he remembered that we had a nebulizer from a time before that she had a respiratory issue & he did that & she slept for the first time around 7am. We got her in to the doc on Friday morning and they said it's probably a virus (not the flu), but that she needed to do the antibiotics from the strep as that can cause some serious complications if not treated. So, she then stayed home on Friday and started the meds. Poor B keeps having similar coughing fits, but he's out working in the yard today as the owner of our home is coming by on Monday and it's the first time he's ever been in any of our homes, yet we've leased from him since Ben was going through his cancer treatments over 10yrs ago!!
I want to be helpful, but we've learned that I am not able to use any household cleaning chemicals or vacuum, as it all triggers more seizures. I even made a vinegar mix today to try to help kill some of the weeds in the yard and I've been fighting seizures off since then...So, I'm being super honest when I say, "I have no idea why the Lord has me here." He apparently has a purpose for my life because I know He won't keep me here any longer than HE needs me, but it doesn't make it much easier. Ben is an incredible encourager, which is why I don't want him to have to take care of me any longer. I want him to be able to focus on Miss P & her growing in to the young lady that God intends for her to be...I want him to be able to go to work and not have to stay home an entire week from work to just watch his wife to make sure that one of her seizures doesn't kill her b/c she's having so many and they won't stop. We learned in May 2015 that one of the meds that we have is the most the hospital can do to stop my seizures, as well! The only difference is that they can inject it; whereas, I have to swallow it at home.
So, today I'm hurting and wondering why the Lord has me here! Basically, all that I know how to do, is a seizure trigger. Reading and writing are both seizure triggers. Thus, there might be many typos in this or I'll have seizures going back to proofread it. Standing & any physical activity are triggers as they increase my heart rate dramatically and the higher it is, the more likely I am to have seizures. Sound is a trigger, too! We've even tried books on tape, but seizures follow. Sometimes
at church, I even have to step out if the music is too loud. So, the physical activity & sound triggers are the reason I can't vacuum (and I love to vacuum and see those pretty lines on the carpet)!!! Though I don't have much of a sense of smell, when my body somehow smells stuff, that can be a trigger, too (i.e., the vinegar)!! We've had to remove all good smelly stuff from the house as that is a trigger. Even essential oils can be triggers. Lavender & frankincense being big ones!
Any chemical that touches my skin is basically a trigger. Even having blood drawn, they want to use alcohol to clean my skin and can't because I will have a seizure. They've even tried betadine and other cleaning agents and they are all triggers. Thus, I can't even help by hand washing dishes that can't go in the dishwasher or put Neosporin on P when she has an injury of some sort. Clearly, I'm not able to drive. So, I ask, "Lord, why do you have me here? What is my purpose?" I would guess that it's to be a wife and a Mommy, but all that would be helpful in those roles tends to be a trigger. So, why am I here? Lord, please tell me!!! This is so hard to wake each and every day and not know my purpose! To know that I love pulling weeds and B and I used to have so much fun sitting in the yard & doing yard work. Yet, each and every time that I've tried, I have seizures!!
However, the next time that you see B, pat him on the back and give him an enormous hug because he does it all!!! Literally!!! Even when sick, he sat up with P most of the night b/c I kept having seizures when trying to sit by her and be with her! He is incredible!! Thank you, Lord, for giving me a hubby that can & will do it all!!!!
Please pray for our wisdom with the med decreases, if the Lord chooses to keep me here. Thank you for your love, if you've made it this far!!!
1 day ago