I'm still here! (update)

[carriej22]

Hi Guys,

I'm still around! I poke in once and awhile to see what the stir is (probably not as often as I should) but I still come on when I have a chance. I'm doing OK. Working two days a week; labs down to once a month (!!!) and attempting to lose all this pred weight (failing, BBQ season.. nuff said).

I've been trying to live healthier and do things I don't normally do. I have taken up gardening and next year I think I will get into flowers! I am allergic to bees but flowers are pretty. Guess I will just have to get a bee suit... This year I've only been growing things I can eat

My inflammation level will not drop. It's been hovering around 40 (whatever this means). My nose is hurting me and I'm scared I'm getting a saddle nose. I see a shadow across the bridge of my nose and while I don't feel anything really when I rub there; it looks strange to me. My husband agrees it looks slightly different but that I'm obsessing. After everything else that has happened to my body (striae ) I would like to keep what I have untouched stay that way.

My stomach looks like cottage cheese.. and I need to lose weight. I am so so so disgusted by it! I am normally OK with it; but at the start of the summer I went to dig out some bathing suits and they were all tiny bikinis that I will never, ever be able to wear again even if I lose the weight. My body looks like it went through a meat grinder. I'm sure some of you remember the pics.

I was helping a little girl get some candy out of the vending machine at work (its for staff but if there's a cranky child we let them come get a treat) and I rolled up my sleeve to stick my hand in to fetch her candy and she touched my arm and she said 'Oh my god. Oh my goodness. Oh my god did a bear do that? Or a moose? Did a crocodile get you?" (note.. we do not have crocodiles in Canada) I kind of froze; because kids are so honest and it made me realize how obvious the marks are. Adults just have enough sense not to say anything. I told her that I got really sick once and that it happened. She then proceeded to ask me if the doctor cut me LOL... I told her no; that they just appeared. She then said "Well I guess now you just have stripes. It's too bad they're not blue or green"...Kids.

But yes I am doing OK. I don't want to say good, because I still have days where I don't really do anything more than feed myself.. lol

[annekat]

That little girl's remarks cracked me up! I think things make a bigger impression on kids and a lot have adults have probably seen your striae but not been overly alarmed.... after all, we are used to seeing much worse things like people missing a leg or whatnot. Anyone would think you'd had some kind of illness or reaction to something and then move on to whatever else they are doing that day.

I'm glad you feel you are doing better! If you feel it, you are! I don't know much about inflammation levels, but I only know that during my last flare mine was at 53 and at my last bloodwork it had dropped to 26.... so I guess 40 is a little high. Wish I could say what that means in your case. I get bloods again tomorrow and will see, as doc said 26 is still a little over normal.

Best wishes on the garden. I've been cutting my lilies that are blooming and they are luscious. Will probably change my avatar soon to a lily flower. Lilies are easy, just plant them with a little compost, watch for slugs in the spring, control weeds around them, and watch them get tall and bloom. Most come back each year. There are many kinds and I know a lot about them because I work for a lily grower in the winter. Here, I plant them in the spring, but in your neck of the woods the ground would probably be too frozen so you'd be better off planting them in the fall. They can take being frozen underground. Any questions, let me know!

[carriej22]

Those lilys are pretty. I think it's meant to be, as your the second person who mentioned Lilys too me. The other person I was speaking with; crossbreeds Lilys. You should see them! all crazy looking, some are ruffled on the edges and some are crazy colored.

[Debbie C]

Glad to hear from you Carrie,been wondering how you've been.Glad everything is going well. Have you seen an ent about your nose? Yea your sed. rate is a little high,the average is between 0-20. But the thing about blood work is it can change in a day. A couple of months ago mine was at 30 and 2 weeks later is was at 15. I need to get mine done again probably next week. Right now I am having a garage sale....something I swear I will never do again....it's horrible.I never realized what a hoarder I am.I have had things in boxes in the basement ever since I moved back in to help with my mother-11 years ago (which the basement is another story--wet and mildew) and then my my church is having a free clothing giveaway and I have tons of clothes ,that I've had for years but thanks to pred. can't wear them anymore either so I have been non-stop.
Good luck with the gardening,we've been getting tons of berries to make jam with and alot of snap peas and beans so far.
Take care and don't stay away so long !!!

[Debbie C]

Anne,your lily's are beautiful. I used to really love gardening but I just haven't got into it the last few years. My mother who is 86 lives for it .She has alot of really pretty flowers in her gardens and around the house but the deer keep coming up and eating them as soon as they start to bloom, especially the lillies.

[annekat]

I'll help anyone get started with lilies. Carrie, the ones with the ruffled edges, those might be daylilies..... not the same as lilies but also very cool to grow, and where I work sells those, too. Or maybe they are lilies, it's just that daylilies are more likely to have ruffled edges in my experience. The crossbreeding your friend is doing sounds great, and he or she might be all you need to get you started with lilies. Let me know if I can help! My employer's website is Lily Bulbs, Orienpet, stargazer lily, asiatic lilies, trumpet lilies, casablanca lily, daylilies, I think, but I haven't looked at it lately to see if there is anything much on it. It varies by season and usually has the most stuff in the late winter/early spring and in the early fall, which could be pretty soon.

[Barbara N]

Hi Anne, I just started gardening but I live near the sea in a very dry area. I planted 200 tulips one year and they came up and were beautiful but the handy man took the hose to them and all of the flowers went away. We fired the handy man. I want to start a garden again some veggies and mostly flowers. We have a lot of flowers that grow wild that are beautiful and don't ever want any water like the Datura, I think in America it is called Gimson weed,they are every where and the flowers look like lilies but they are only out at night and they close during the day. They are very poisonous but the animals all seem to know that so they don't touch them. Gardening is a good hobby.

[annekat]

Hi Anne, I just started gardening but I live near the sea in a very dry area. I planted 200 tulips one year and they came up and were beautiful but the handy man took the hose to them and all of the flowers went away. We fired the handy man. I want to start a garden again some veggies and mostly flowers. We have a lot of flowers that grow wild that are beautiful and don't ever want any water like the Datura, I think in America it is called Gimson weed,they are every where and the flowers look like lilies but they are only out at night and they close during the day. They are very poisonous but the animals all seem to know that so they don't touch them. Gardening is a good hobby.

Tulips grow well here but I haven't had a lot of luck with them myself... maybe not enough sun where I planted them, and my soil is pretty poor. But we have fields of them and a tulip festival a bit north of Seattle. Lavender also does well enough to be commercially viable and there is a Lavender Festival. No Jimson weed here, but perhaps in the eastern half of the state which is drier and much warmer in summer, and somewhat desert-like. I saw them growing wild in central California where I used to live; they are pretty. I read about their use as a hallucinogen for spiritual purposes in the book The Teachings of Don Juan, back in the 1970's. That is not something I would ever try or recommend! I'd prefer to think of them as poisonous, as you say. In any case, sharing stories about gardening is a good thing! I guess I might have given the handyman another chance, as he may not have meant to destroy the flowers.... yes, they are fragile. But I was not there, and you were! It must have been very disappointing.

[Alysia]

Hi Carrie.
Im glad that you are doing better. about your nose: from my experience, it becomes "saddle" if there is active inflamtion in it. do you have such ? bleeding, crusting, a lot of "provisions" in all colors, pains, no smelling ?

Anne, cong. for your new Avatar. it is very beautifull.

[annekat]

Hi Carrie.
Im glad that you are doing better. about your nose: from my experience, it becomes "saddle" if there is active inflamtion in it. do you have such ? bleeding, crusting, a lot of "provisions" in all colors, pains, no smelling ?

Anne, cong. for your new Avatar. it is very beautifull.

Thanks, Alysia. That is one of the lilies currently blooming in my yard, though the pic is a year or two old.

It seems less likely that Carrie's nose would become saddled now that she is getting successful treatment and Wegs has theoretically been stopped in its tracks or slowed way down. But I understand her concern given the pain and the continuing high inflammation level. I sure hope this does not happen!