and one fell out. Four in the bed and the little one said, "Roll over, roll over."
And it all begins again.
My son claims he's about 75% recovered from PANDAS and Lyme symptoms. For today. Well, really, a week ago. Allergies set off his tics and although he went for allergy shots years ago, he's till got 'em. For the last week, he's been Zyrtec-free so that he can test for allergies (again.) Zyrtec was doing a lot to control his tics. Not being on Zyrtec = not good for the 13 year old who stays up past midnight with ultra-sized ticcing reverberating throughout the house.
He starts school in 2 weeks and is looking forward to it. He wants to go to school!
Now, my daughter, on the other hand....
When we learned my son had PANDAS and I found PANS/PANDAS support groups on the internet, I heard about several kids in a family having the same disease. More than one child with it? I was aghast. I really didn't know that I could handle that and it shook me up. My son was so very sick--raging daily, sometimes hourly. I'd hold him. How could I put up with more than him? There were days I wondered if he would live; he was in so much neurological and emotional pain. On more than one occasion, we slept with him in the middle of our bed just to keep an eye on him. Or an arm. He didn't want to live. He'd wander outside in the middle of the night. I know that we saved his life, with the help of some wonderful doctors.
There's lots of talk of suicide going on lately. A few weeks ago, a lovely young woman suffering from Lyme Disease--really, truly suffering--in pain and without job, money, resources--took her life into her hands and walked in front of an oncoming train. And then, last week, Robin Williams.... I read an excellent blog that argued that Robin Williams didn't kill himself; the disease did. And I agree. We need to differentiate between the neurological disease (which I prefer to mental disease) and the person himself.
I'd be lying if I said I never contemplated life--and ending it--in the past few years. There were days that I felt that life was so hard, so cruel, that I wondered what our purpose is--why the heck are we here? All I could see was this dense, gray fog in front of my future. Sick family. Forgetting things. Financial hell. More pain to come.
However, I will do anything for my children, and although that would include taking a bullet to save them, it also includes doing everything I can to always be with them, supporting them, maybe someday babysitting their own children. I would never, ever leave my babies, no matter how old they are.
Bicycle riding brings joy into my life. Even though it also brings more back pain! So I rode and I rode, usually with a friend, and I laughed. And started seeing the blue skies of the world again. It was a long, cold winter (5 years of my son being sick,) but now it's summer. With an Arctic chill.
Last month, as I lay on my bed (as per usual,) feeling sick to my stomach, anxious in a Lyme way that's not me at all, my hip and back in pain, unable to stay awake, something occurred to me: my contemplation of life and death and scoliosis is a first-world problem. I'm not depressed. I don't have something neurological that is making me want to end the pain in my life. The Lyme in my body has caused some neurological issues--where did I put my glasses? What was I talking about?
About face. Mind wipe.
Oh yeah. I want the pain in my life to end and I'm taking every step, every doctor appointment to make that happen. I can't lie about moping, although I do wonder about the state of the world. I worry about the spreading of Lyme Disease (do they really think it's only 300,000 people a year getting this? I see Lyme everywhere now!) I worry about cures for Lyme and for PANDAS. I worry about being Jewish and hunted down, as is happening in all corners of the world, including Florida and New Jersey. I worry about ISIS and Hamas and about a friend's son who is joing the Marines--where will he end up?
And, worrying like this and bicycling with friends? I have a life. I have love, friends, doctors. So I've got disc bulges in my spine. So I've got an IVIG bill to pay off. So I've gotta go back to a job I actually love in a week when I'd rather be home bicycling and napping and being with my kids. So what?
Two weeks ago, I began for Bartonella now and my anxiety vanished. I think my doctor's a magician. I also think the mincocycline I was on before this gave me one huge herx.
So, there are 2 members of the family on antibiotics. There were three in the bed and the little one said...
Roll over! Now there are 3 of us on antibiotics and only one of us NOT.
My daughter was supposed to be the "well" child. When she tested CDC positive for Lyme, we opted to treat her more naturally, to avoid antibiotics which can affect her gut and immune system. How'd that work out for us? Well, she ain't doing so well anymore. The tables have turned. I had to remind my son that her "behaviors" are symptoms, that she is actually sick (as he was,) and to be patient with her.
Please don't judge my child, I want to shout to the world! For unlike my son, she does not contain her symptoms to just home. She is who she is and it all comes tumbling out. She's got a fiery, joyful personality--she's that girl with the curl in the middle of her forehead. And when she's feeling bad, it's really horrid. Although, nowhere as horrid as the worst times with our son. She's a drummer, she's a My Chemical Romance fan, she's a girl who can't wait to dye her hair (and has done a streak.) And she's 11. She's also the most cuddly monkey with the exception of my son, who can be just as affectionate.
Last night, for the umpteenth night (not in a row,) she could not fall asleep in her room, even with the family dog. She's afraid someone will break in.
There we go. Symptoms: Air hunger. Intrusive thoughts. Some little quirky tics. Separation anxiety. Auditory processing disorder. Some excecutive functioning issues. Handwriting.
When she was born, my husband and I were surprised at how much she would sweat at night. We kept her in a onesie. At only 2 weeks old, she caught a fever and landed in the hospital for a weekend. They found nothing and I didn't know yet to ask for copies of all labs. Or SPINAL taps. I requested them this summer and should be receiving them in a couple of weeks. They had to dig them out of archives. I wonder if they ever tested for Lyme. Or Babesia.
So they all rolled over and one fell out. There was 1 in the bed... so far, my husband thinks he's free of Lyme. I'm not so sure but he's strong and we need him just as he is.
I do know that I've changed from that frightened mom I was a few years ago. I can manage two sick children. Not perfectly. Plus I'm fortunate that as my daughter's symptoms are worsening, my son is doing better. She starts antibiotics tomorrow morning for the first time.
I'm not going anywhere. I will be a mom to my children for all of their lives, and as good a wife for my husband who deserves so much. I'll be writing my blog and teaching my classes and looking forward to someday having more energy so that I can write the two novels that are living in my head.
Just don't tell me my dog has PANDAS also.