It's been waaaay too long since I've been here! Over the past few months we've had 2 computers go on the fritz, my Kindle died, we've had internet issues, and being online was only happening when I could manage to get a device and the internet working at the same time. Our internet seems better and my Dad gave me his old laptop, so it looks like I'm back up and running, at least as far as internet communication goes!
I also had an amazing nine days at Camp Calumet in Freedom, NH (USA) with my family and then spiraled out of control in a huge spondylitis flare. Remicade has been doing less and less for me. I've been to my rheumy several times, and he's continuing to research options due to all my medical complexities. I have my next infusion on the 18th, and if I'm not improved by then (I'm on a prednisone taper for diagnostic purposes), he orders and MRI and nerve tests of some sort. I have tingling, numbness, and shooting pain in my arms and legs, a leg that collapses out of the blue, and I've started dropping things. I've had a headache for months due to severe neck pain and haven't slept more than 3 hours a night in months due to neck and back pain. Hopefully tests will reveal what the issues are and give me options for treatment. Anything new come out since June that I should know about? LOL
I feel like I'm so far behind on this site, and in life - like I need to catch up with Summer stuff and Autumn is swiftly approaching! I see the need to just let it all go and move forward. I hope you don't mind me hopping back on and inserting my two cents every once in a while - I've missed you all!
Oh, Nym,
I’m so glad you are back! I was wondering about your health recently, thinking that might be why you weren’t here.
I haven’t kept up with the latest and greatest myself,so maybe lamb will stop by this conversation to give you a rundown of the newest drugs.
It sounds like you’ve had a go of it this summer. I wish there were something I could do to help you, but I can offer you a sounding board if you need it.
So hows the front of the house coming??? Just a thought but a year off from homeschooling may not be the worst thing. maybe some of your association friends could share the duties and you prepare a special unit from time to time???
Ah, the house - the contractor will hopefully be coming by this week to finish up the paperwork he needs to submit to the city and we go from there. The $15,000 repair to the outer wall, replacement of the deck, etc. will hopefully be done before it snows! LOL
A year off from homeschooling would be more stressful than not. We go to co-op once a week and I teach one class, with the help of my 12 year old daughter, who does most of the physical stuff, while I do the verbal teaching and organizational stuff. The rest of co-op day I either hang out on a couch, walk around talking to people, or if I'm feeling up to it, join in in Tai Chi or other gentle movement class. It's actually one of my most relaxing days because all my kids are in classes. Homeschooling the rest of the week looks very much like a normal day, except with the occasional animal dissection or scientific experimentation going on. ;)
Its your NORMAL day I was referring to Kiddo..........Imagine 9 more mos of "camp" I can't imagine some of your home school parents wouldn't step up for a few mos and take some kiddos. Gosh knows they owe you. Other than your spectrum kiddo, their lives wouldn't be destroyed in Public school (for a while anyway.) In terms of actual education, they won't miss much and could honestly catch up in a month. The spectrum Kiddo would have them trained in a week and have a great time.
Your symptoms are concerning. You need to simplify your life a lot get on track and fast or get staff (like that is going to happen) Those Kiddos need a mom long term. If you are not VERY careful, you will be the person your kids take care of and your 12 year old will be Mom.
Hows that for a welcome back???? Missed you, a lot.
BTW, New Medicines: Secukinumab, orencia, Rituximab, Fostamatinib, and Xeljanz all come to mind. I have heard some good things about Secukinumab (a little heavey on some side effects but as opposed to nothing.........)
Also get a copper level. It sounds like it may be high. There is a growing body of evidence that the neurologic pain with autoimmune disease is related to Wilsons Disease. Even some forms of spectrum.
You'd have to live our version of homeschool (with 2 spectrum kids, btw! LOL) to understand why it would be more stressful for me to get five kids to and from three or four different schools every day, deal with hours of homework per child, pack school lunches due to our kids' food issues, etc. Today I got to rest all day because that's what my body needed me to do. Ok ... I read books with children, read their daily journals, read interesting stuff they sent me online, watched a documentary with them, and did lots of gentle stretches during my six-year-old's self-imposed "yoga" time.
I have friends who help out as needed; my parents, who drive kids to church activities if I'm unable and me to appointments as needed; children who can make their own food and who cook dinner on their own at least once a week (they'd probably cook three or four days a week if I let them, but I love to cook!); children who are very responsible about cleaning up around the house; friends who help out in myriad ways; a homeschooling community that will not let my kids miss out on something they want to do if logistics (of having five kids more than anything!) get in the way. I think I'm good as far as homeschooling goes. :)
I'm considering Rituximab - know anything about it?
tntlamb said:
BTW, New Medicines: Secukinumab, orencia, Rituximab, Fostamatinib, and Xeljanz all come to mind. I have heard some good things about Secukinumab (a little heavey on some side effects but as opposed to nothing.........)
