Strep throat was the main things that overtook us but along with it, I wonder if we had influenza and the stomach flu. It was BAD!!!! Many children and adults too get strep throat and can fully recover without antibiotics. But some need antibiotics to get well. Plus antibiotics can cut down on the time frame of the person being contagious, and it's a highly contagious infection also lessen the chance of getting complications such as rhumatic fever (when the immune system attacks the heart), another big long word that is for inflammation of the kidneys, and PANDAS (a neurological disorder).
Jackson got sick first and when I took him to the doctor, he tested positive for strep throat. When the next one got sick, I called in and asked if we could have an antibiotic prescription for each of us, and the doctor did that for us.
We had fevers for days. And some even a week. Fevers that made a couple of my children think they were dying. Jackson had it the worst and longest. At one point, he clung to me, crying and said “everything is spinning! What's happening?” He even got a bit delirious. Then... his strep throat caused him to get scarlet fever which is caused by a poison (toxin) that the bacteria sometimes releases. I knew that strep throat in itself can possibly have some pretty serious side effects, so add scarlet fever yet and I was a bit afraid. I too got strep throat and caring for sick children was nearly impossible. But we did survive. The effects lasted a few weeks for me and then I started to feel pretty good again.
But for Jackson.... it lasted months. He developed PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder). In short, sometimes the strep bacteria hide by mimicking normal, good cells that live in the brain. Then when the immune system finds and fights them off, sometimes it also fights off the good brain cells which can cause PANDAS. About 1 in 2,000 children are affected by it after having strep throat or scarlet fever. The symptoms (separation anxiety, OCD, eating disorders, and things like that) come on suddenly within 1- several weeks after infection. They can last for weeks, months, or even years for some. There isn't a test out there for it. It's just diagnosed by the sudden onset of symptoms following strep throat. Doctors treat with antibiotics and sometimes anxiety medication.
About a week or two after his last fever, he suddenly began to have serious fears. Out of the blue, he cried and asked if we could start locking the doors at night. He feared a shooter would come to school. He was afraid to go out to recess. Their story hour book was scaring him. He was afraid he was going to get sick again. He was very afraid that I would die while he was in school. The list became long. Soon he was afraid to leave my side and for sure to go to school. I felt very sorry for him and yet it was frustrating.... very frustrating!! I was aware of PANDAS but not extremely knowledgeable on it. I began to wonder if maybe I was the problem. Maybe I wasn't a very good mom? Maybe I wasn't providing enough security and love for him? Maybe he was just trying to control me? Maybe I didn't discipline enough. In retrospect, I highly regret all those feelings. I regret my frustration. I wish I had fully understood PANDAS and been more patient and a strong mom.
I had been starting to feel better physically, but with Jackson kept getting worse emotionally, it began to take me down. I tried to stay strong but the weight of responsibility to know what to do to best help him, was huge. We tried many things including more antibiotics but not anxiety meds. At first I thought the antibiotics were helping but he soon was back to his fears. I won't list all the things we tried. But I spent many hours and days at school. He shed many tears. (I too shed some but tried not to in front of him) The look of sheer terror in his eyes when I'd leave him was awful. It broke my heart. He tried so hard to be strong and brave but it was all so real to him. He got to the point where he didn't even care that his friends and teachers saw him cry when I walked out the classroom. (And for those of you that don't know... he's 10 years old and was in the 4th grade... and crying cuz your mom walked out the door is NOT normal! Thankfully... he has very kind friends that never, ever made fun of him that I know of!)
I'll be honest... I felt it was unfair (I know... My dad often told me “Life's just not fair, sis!” And he was right!). I felt like why did this have be thrown into my life. But I tried really hard, (and with God's and Russell's help, succeeded quite a bit) to find all the things to be thankful for in it. I kept telling myself “It could be much worse” even though I felt that my little boy wasn't even himself anymore and I wondered if he ever would be again. I decided that maybe someday, due to this experience, I could help out, or at least be understanding to, another mom going through this kind of thing with her child. Also, over and over I thanked God that I was well enough to be able to even be to stay at school for him. I decided to try to make lemonade out of lemons and instead of thinking and feeling frustrated about all the things I needed to be doing at home, I'd spend time sitting in classrooms, play recess with my children's classes, help out the teachers if I could in any way, and one day even made chocolate chip cookies for the whole school. Sometimes, I had to sit right outside his classrooms, but generally it was good enough just to know I was in the school building and he could see me alive at recesses and lunch time.
Yes, the thankfulness helped but the stress began to take me down. In April I had an appointment in Wisconsin. I really wanted to go but had no idea how it would work to leave Jackson. He had been improving but we thought maybe we'd just have to take him with us. I felt guilty to do this but we just didn't tell him till the very last minute and my mom came and spent night and we left the next morning while he was still sleeping. He didn't like it, and it was hard for him, but he survived.
We drove all the 10 hours at one shot and by the time we got there late at night, I was in a fair amount of pain. My neck hurt really bad and was causing numbness. When it started going numb in my head and face, I began to worry. But we finished the drive and I quickly vetoed the plan of turning around and driving all the way back right after my appointment in the morning. Luckily Dr Ben was able to adjust my neck and back after my Lyme treatment. It helped some.
As far as the Lyme Disease, I was down to only 4 things left. The main one being Bartonella. It was still in several places including my brain and lymphatic system. Dr Ben said it is one of the hardest of the co-infections to get rid of. So... I made another appointment for in September.
My physical health seemed to keep declining. My back and neck pain kept increasing. I tried going to the chiropractor once a week for awhile which felt great for about 2 days afterward. I certainly couldn't afford to keep doing that. But I kept reminding myself that I wasn't even remotely close to as bad off as a year before.
Thankfully (Praise God), Jackson kept improving! After months of tears and fears every morning before school, and me easing off how long I stayed at school, having the teacher meet him at the door, having Russ or my sister take the children to school, antibiotics, natural remedies, etc etc.... he one morning bravely told me “Mom, I think today you can take me to school and I'll be ok”. And I did!! The fear was in his eyes but he didn't cry or cling to me. He hesitated, got out, looked back at me, waved, then turned and walked in. I drove away and wept... tears of joy!! Soon he didn't hesitate any more and then soon he didn't look back and wave, and soon the fear left his eyes. Ahhhhh.....
The first of May I started noticing that I was having a few dizzy spells and some nausea. I greatly ignored them and said to myself “You just imagined that! You are fine!” Because I feared “What if I keep going downhill?” I wanted so badly to have a summer of feeling good! I continued to slowly decline again.
Right after school let out, the children and I headed to Burns so they could attend their Bible School and get in some quality cousin/friend time for a week and a half. I hoped that with school being out, maybe some stress would be less and I'd get to feeling better. I still felt much better than a year before so I tried to just stay thankful for that and not think that I was getting worse again. But.... I got a cold 2 days after being there. It hit with a vengeance. I was extremely nauseated and had a really bad headache. I hurt badly and my head soon felt it might explode with pressure. I got over the worst of it and luckily was still able to enjoy being with some friends and family. I felt pretty wore out though when it was time to pack and head home. In the midst of packing up, I developed a severe migraine. It put me out of commission in short order and there was no heading home. I cried as I laid in bed with pain and tension so bad I couldn't sleep. By about 10 that night, the headache had lessened quite a bit and I was determined to head for home the next morning. I even had thoughts of staying up and packing that night but just didn't have the energy. So.. decided to sleep and surely I'd be well enough in the morning to pack.
Well.... wrong again!!! At 4am I woke up very sick to my stomach. Luckily I found the scrap bucket in the kitchen and it's contents were quickly emptied on the counter. Needless to say, the bucket and I spent many hours together in the bathroom. Finally around noon, my stomach had calmed down and I could rest. Thankfully I had dear family and friends to care for my children! But I began to wonder if I'd ever get home! Determination struck that night and I decided that in the morning we were simply throwing everything in the vehicle and heading home. My children were wore out too from all their playing, with cousins and friends day in and out. In the morning, as I flopped on the bed to rest and ease my lightheaded-ness, one of my children groaned and said “we'll never get everything loaded”. A few tears spilled out from both of us and I begged him to just keep going. We made it!!! Once we were packed and on the road I actually felt a little better. But oh the crash when I got home!!!!
I simply could NOT get well! I was miserable!! I kept thinking “surely tomorrow I'll be better” but it just wouldn't happen. A grandpa died in our congregation and we got asked to fill in for food committee on the funeral. I said yes because surely in 3 days I'd be better. But the next day I decided I better cancel. Good thing I did because I wasn't even well enough to go to the funeral. I began to feel very discouraged. I wondered if the tick I pulled off the first of May could've reinfected me with Lyme. But that seemed crazy. My children had recently pulled off numerous ticks from themselves and they weren't sick. I wondered if I had somehow gotten some kind of severe food poisoning. Every time I ate, I felt sick to my stomach. So I'd go without eating for long periods and that made me lightheaded. It seemed I was starving. Did I somehow have some worms in me that were eating up all my food?
I finally contacted Dr Ben to see if maybe I could get an appointment sooner than Sept. He had one for July 18 and I took it but hoped I'd be well by then and wouldn't have to go.
I had agreed to help a friend teach Bible School here at home but it was fast approaching and I had no idea how I could do it. I did nothing to help her prepare. But had agreed in the beginning that I'd be in charge of stuff for an attendance chart. I found myself going at a snail pace in Hobby Lobby and only looking straight ahead, as turning my head made me feel really light headed. Thankfully Russ had all the children but I still found myself unable to even think clearly. Eventually I did get the things I needed. Bible School started in just a few days.
Surprisingly I began to slowly improve. By Monday evening Bible School I was able to go. I still felt like I was moving in slow motion and eating made me feel sick. But I managed the first night. And... I kept improving!
About in the middle of Bible School, I was at our local General Store and noticed they had crystallized ginger for sale. I didn't even know there was such a thing. I've read that ginger helps with migraines, but eating it raw or spoonfuls of powder seemed pretty awful. I was enthused to try it. So I bought some and luckily thought it tasted pretty good. In just a day or 2 I got to “try out its powers”. I got a headache before Bible School and it got worse fast, so I ate several pieces and took some tylonal. But once at Bible School I realized I was going to have to ask someone to take my place. And then... all of a sudden my headache started to leave and within short order it was gone!! HUH?!?! That is NOT how my headaches work!! I was stoked!!
I began to eat that ginger just because it's so delicious. And hey if it can make headaches go away... who knows what else it can do. I also had read it's really good for inflammation and Lyme causes really bad inflammation.... so hey... won't hurt to eat it surely. Well... it iiiiissss covered in sugar but.... I really don't care... as long as it' helps a headache!!!
So... that first time of eating crystallized ginger for a headache was a little over 2 weeks ago. Since then I have cured 5 headaches! I'm serious!!! Sometimes I've taken tylonal with it but sometimes just the ginger. But every single time about 30 minutes to an hour after eating several (or maybe 4 or 5 because they're delicious and not very costly) pieces of ginger, my headache LEAVES!! That is just incredible!!! And often when I get a headache, I also get very tense or vise versa. But it's interesting how even the tension in my muscles lessen.
Truly... the last 2 weeks have been amazing. Just this morning I canceled my July 18 appointment with Dr Ben. I wonder... How could I go from being so sick, to feeling so good?!? I wonder if the daily, yummy ginger could be helping? Or maybe it's that my stress level has gone down a lot and is allowing my body to heal? But hopefully it's simply that my body is again healing. I know that at any given moment I can become sick again. But my body is beginning to prove itself that it can get well and doesn't have to stay sick.
I fear it will have that opportunity in just a day or 2. Sadly... very sadly, this household has been again hit will some kind of illness. I hate to think it but I wonder... is it strep throat again? Branson began with a fever for less than 24 hours. A few days later, Shiloh got a fever and bad sore throat for a little over a day. And then Jackson got it Monday evening and was sick for a few days but seems to be doing better now. So far the children have not been nearly as sick as in January so hopefully they haven't had strep throat but it is/was, I pray there's not lasting effects!!!
I'm not against antibiotics again but they really didn't prove to help in January. So... I have some oregano leaf oil that I bought after the antibiotics didn't help that I'm giving Jackson along with some grapefruit seed extract. Both those things are known for being the best natural antibiotics out there. If he still has a fever tomorrow, I'll probably take him in and see if it's strep and get him on some antibiotics if it is. Quinton and I are taking the natural antibiotics too in hopes it'll prevent us from getting sick but we'll see... my throat's been hurting a bit the last couple days. Russ.... he just doesn't generally get sick like the rest of us do!!
Speaking of Russ... For quite a while last fall I'd been thinking I should try doing some juicing and healthier eating, to see if that would help with my swollen lymph nodes and pain. But I decided to wait till after the holidays were over. Well... then I had to wait till we all (well not Russ and Shiloh) got over our “New Years illnesses”. Then we got a $4 juicer from a thrift store and I bought up on grapes (the best thing for getting the lymphatic system to drain) . Russ said “Hey as long as you've got the juicer on the counter, I may as well try it out and see if I could lose a few pounds!” So he began drinking a carrot, celery, beet, cucumber, kale, spinach, apple, lemon juice every morning and... also decided that salads for lunch would be a good idea. Hmmmm.... Surprise... He not only started to lose some pounds but he started to have more energy and not be so tired. While my grape juice was delicious, I wondered if it was a good idea to go from a full fledged extremely unhealthy diet to only grape juice. And as disgusting as his juice looked and smelled, I thought maybe I'd be better off drinking that and then down the road try a grape fast. At first I added much more apple and some grapes too to my juice than he did to his. But after awhile I toughened up and decided his wasn't so bad after all. I sure wouldn't call it delicious but it's drinkable.
Good for Russ, he's been maintaining his good weight, but I on the other hand, have sadly gained back pretty much all that I so happily lost. I still drink the juice (maybe not quite every morning like he does) and eat salads for lunch but I just don't avoid all those yummy things in life that aren't conducive to weight loss. But I keep telling myself that when I'm back to steadily feeling well, maybe I'll try again.
And just for interest sake, for those that don't know this already, Russ started his own business the first of May. He's back to being a mechanic and loving it. He is very, very thankful for the Lyme Treatment he got and he is soooooo much better than he was a year ago. He still drinks a lot of coffee but mostly just cuz he likes it. He's not feeling totally wore out by 9am nor is he taking anything to keep him awake like jet alerts or no doz.
I still worry about possible mold in our house. Pretty much every time I walk in this house, I think it really doesn't smell very good. Kinda musty-ish. We have a purifier running and it helps some I think. Someday I want to look into having a professional come out and test for mold. It seems like often when we've been gone on a trip, we get sick after we get home. Maybe if you live around mold all the time, your body gets more immune to it??
These last couple weeks I've been again thanking God over and over what he's done for us. And a tiny thought has begun to grow in my mind... “What if I'm actually not a lazy, slow, lack of self-discipline person?” “What if what I've believed about myself all of my life, is actually not true?” “What if I've instead been tired, and wore out, and slow from a true illness?” I've wondered these things before but the arrow always winds up pointed back at me and saying “It's your own fault. You make bad choices!”
But then I wonder.... in the last couple weeks, why have my kitchen counters been free of dirty dished numerous mornings? Did a little elf come in the night and do them? Or did somehow, me, Martha, the lazy one, have enough energy to wash them herself before going to bed? And what about mornings? I have scolded myself and even hated myself much of my life because of my love of sleep. Why can't I just get up and get with it? I wonder... why this past week have a I actually chosen at times to not go back to sleep after Russ goes to work? Why haven't my children been waking up before me every morning and I hear them through my deep fog of slumber “Mom, when are you going to wake up?” and I mumble some unintelligible reply or worse yet, fall back asleep before they even finish the question? Why have I chosen to work, like clean or do laundry, etc, simply because I WANT to, not because I absolutely have to?” Why have I had thoughts like “hey this is actually kinda enjoyable” while working? I many times admire and long to be like people who just “quick” do something instead of plodding slowly along. Many, many days it felt like it took me an hour to unload my dishwasher and then I needed a rest. Why... Why one day recently did I have a thought like “I could go sit or lay down right now but I truthfully don't feel like it?” It was like “Where'd that thought come from?” And the next was “If I sat down right now, I don't think I could even fall asleep if I tried”. Now that.... my friends was an extremely astounding realization!!
I would love to be able to continue living life like that! Time will tell... But I have hope!! Yes... LOTS of hope!!!! I will repeat... I am seeing a pattern and want to believe it will continue the rest of my life... Get sick, get well, get sick, get well... Instead of 300 sick or excruciatingly tired days and 65 well days a year. Ok... so no my life hasn't always been that way but sometimes it's been close. And hopefully over time my body will heal more and more and will be able to get well faster and stay well longer. I know illness and pain will always be a part of our lives as long as we're on this earth but I think/hope maybe I've crossed over the half way point of having more well days than sick days!!
At this point, I need to remember, I'm still fighting off some Lyme. The pain under my arm from the swollen lymph nodes is always there but mostly dull. Sometimes the swelling increases a bit and it feels uncomfortable to rest my arm against my side. I suppose it's getting close to time to try a grape fast. I wish I could just get the whole lymphatic system to break lose and drain or whatever it needs to do.
Also as far as my neck, I sent in my 6 month checkup x-rays in January and try as I might to get the results, there always seems to be some kind of communication problem. To be honest I wonder if the liaison man that I went through is too busy and maybe even taking on a little more than someone his age should? I don't know but I really would like to know the results. My neck still does hurt but not nearly as bad as before the surgery. I assume though all is where and how it should be from surgery.
So.... that's the up-to-date report for now!!
Thanks again for your love and care!!! How awful life would be if we had no family or friends that cared about us!!!! I am blessed.... VERY blessed!!