I’m a complex creature, and what you see on the surface may not have anything to do with reality. Don’t judge the proverbial book by its cover.
Ankylosing Spondylitis is an autoimmune disease that runs in my family. My grandfather had it, and all of the women in two generations on my mother’s side have it. It slowly fuses the spine, and affects organs and eyes. Some of its complications have the potential to be fatal eventually. I’ve finally found a medication that works for me to slow the damage. I also have Lupus and am recovering from a massive battle with Obstructive Pulmonary Disease.
As a result of my illnesses, I’ve learned to live for today and enjoy the heck out of every moment.
I’ve been working really hard on getting my fitness levels up and eating as healthy as possible. I’m making friends with my body and learning to accept it despite its flaws. In that vein, getting fit and healthy is really important to me. I’m finding joy and wonder in figuring out new limits, and then testing them.
hi…just wanted to say that you have an absolutely fabulous blog…informative, funny, enlightening. First, thanks for the great review of Ama Ama….now I know I have to go.No “honey” to share it with..but what the hell..
And you’ve had shingles….pain in the ass, isn’t it? I had my first bout last September along the middle nerve of the trigeminal nerve….yes, on my face. Everyone that I’ve ever known has had it on their torso, where no one can see…oh, no, not me…on my upper lip, my nose, in my mouth, and up my right cheek up to my eye. I still have remnants of it. Finding a make-up to cover it has been challenging, and I still get the “itchies” around my nose…those little tickly nerve feelings.Oh…and I’ve just been going through tx for Vit. D deficiency (doesn’t everyone here have it?)..mine was a deficiency of the pro hormone that D2, D3 is converted to help absorb calcium…I need that to function, since I take a cancer drug that can cause osteoporosis…
I’ve also been doing a little research on AS, since I know I should really familiarize myself with it in general.So, thanks for the impetus to make me do that…what a devastating disease it can be…and glad to hear that it’s not defining you. Also glad that they’re working on new drugs to help it.
Again…love the blog
Jan (from WSB)
Jan, it’s amazing how much we have in common. We really do need to grab coffee sometime.
Thanks so much for the compliment on my blog. I’ve always enjoyed writing, but essentially do math for a living, so this is really a great creative outlet for me.
Shingles… ugh yeah. I usually get it on my thigh. Yet another “disease Aim gets in the most unusual presentation” … story of my life! I’ve known other folks who’ve had it on their faces – mostly from the Arthritis support communities I frequent. Check out Google Groups under alt.support.arthritis for an awesome community of folks with various auto-immune diseases all over the world. We meet up periodically, about once every year or two, for fun and laughs. I assume from things you’ve said you’re either a cancer survivor, have an autoimmune disease, or both.
There is nothing like that nerve pain, or the post-herpetic neuralgia (I almost typed “heretic neuralgia” … HA!) I am so sorry you’re dealing with it on your face. How frustrating and painful! Funny thing is, it’s relatively easy – if you’ve got good body awareness – to “shut off” a lot of the sensation in a limb or in most places that hurt. I “shut down” in order to cope through a lot of days. However, face pain is so much harder to do that with. The unfortunate consequence of intentionally shutting down pain receptors is that it also shuts down pleasure ones. So I can bear the back pain, but it takes a whole lot for me to get back to a place where I have enough sensation to physically enjoy the little things like my partner rubbing my back. Fortunately he understands pretty well that I have days where it takes a lot to bring me back “into” my body. I did biofeedback training as a kid and it still amazes me the amount of control I have over my body’s so-called involuntary actions. I can’t register a fever because the moment I think I have one, I unconsciously lower my body temp back down to normal. Not always a good or useful thing, but it’s a fun party trick!
I agree pretty much everyone around here is Vit D deficient. My doc says about 80% of the folks she tests have pretty significant deficiency. I’ve actually got to order some today. Liquid D2, 2000 IU per day. Good times.
oooh, have you found DermaBlend cosmetics yet? I used their concealer when I was younger to cover scars, and they even cover tattoos without looking like spackle. Might be worth a shot for the shingles scarring (I have it on my leg. It fades over time, but I remember the angry red-purple scar I had for a long long time…) They carry it at Macy’s in all locations and at the SouthCenter Penney’s.
Thanks so much for your comment. It’s nice to know that the stuff I write is being seen, and that it’s useful in some way, or entertaining!
Hi, again….yes, cancer survivor (3 years), have osteoarthritis (one hip replaced, another coming up this spring). Those are the 2 biggies right now. Hey… it is what it is…and life goes on
I’ve read a bit about dermablend, and have considered trying it. I am using L’Oreal brand mineral makeup right now, and their cover up covers up pretty well. When this is gone we’ll see what I try next…hehe.
A question…where do you get your liquid D-2. I was on an oral D capsule for a while…50,000IU once a week…but an looking for something daily. I have a B-12 deficiency, too..take prescription B-12(caplet) for that….but am not sure if it’s really working. I will be having some blood tests soon to evaluate each. Joy. I’d much rather be doing a sublingual B, but insurance pays for the B-12 caplets
Another thing in common…JigZone….love it…lol…
Hi Aim,
Just wanted to check in and say hi and PLEASE stay in touch. I just barely got to say hello to you and Luis at the Locksmith “event” but there’s always time to remedy that. Meeting good folks I might not encounter otherwise is a great benefit of the WSBlog.
charlabob
Hi Lady.
I will ABSOLUTELY keep in touch. I was going to send out an email to you and a few others a little later today so you all have my contact info, and also to see if we can’t arrange some type of get-together soon.
Luis says to tell you he’s “too mean to leave” so he will still be around
I just can’t be a part of that sort of atmosphere. It’s not good for my health to get so pissed off . I may be back, but I need a serious break.
Much love to you and the b.
Aim
Hi- I was wondering if you could tell me who your doctor is that did all the blood work to find out about testosterone, vit D, thyroid, etc. My partner & I are looking for a new doc and whoever this person is sounds good!
Thanks!
Hi Meg,
It’s Dr Lisa Davison at Middleway Medicine on Madison. She’s at (206) 322-5498
# 3121 E Madison St Seattle, WA 98112 – right by the entrance to the Arboretum. She truly is awesome, and I love her as a doctor. She will even communicate with you via email if you prefer it to phone calls.
The ONLY thing I don’t like a ton about her (and it’s not enough to negate all her wonderful qualities) is that she’s got some odd issues around weight. She told my partner to lose 10 lbs due to his BMI, though he works out daily, eats really well and is on year 2 of being on testosterone (which is known as the “fluffy” year – the weight drops back off in year 3 or so for most guys. Anyway, it’s not really an issue as long as you are aware that her issues are hers and don’t have to be yours
Other than that, she truly is fantastic!
Let me know if I can give you any other info about her. Oh, and her receptionist, Alicia, is sometimes a bit curmudgeonly. It’s part of her charm. She’s a cheerful cynic, really. Don’t take it personally if she comes across as grumpy. She’s not.
Thanks! We’ll give her a call!
It’s Vitamin D3 you want. You do not want D2 because it won’t have the same effect. If you want, email me and I’ll be happy to send you the original research.
You can take it weekly rather than daily too, because it is cumulative. If you are deficient, up to 10,000 IU per day is fine – so you can take 50,000 IU + per week.
The 1,000 IU – 2,000 IU was established because the doctors couldn’t admit they were so wrong with the old hat of 400 IU per day. Anyway – if you want the original presentations on the research, email me.
Good health to you!
Frani