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 :w00t:

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 :crying:) 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 (http://www.lilypadbulbs.com), 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!

[Barbara N]

We had been trying to get rid of the handyman for ages, he was terrible so on his 65th birthday we bought him a pocket watch and said good bye and thank you for your service. I don't think he understood the idea of the pocket watch, I guess you have to be American. I certainly have enough fertilizer from my horses. I'll try again and see how I do. We have something that looks like tiny lilies that grow wild everywhere,, they are beautiful but they smell like garlic, may it is garlic at one stage.

[annekat]

We had been trying to get rid of the handyman for ages, he was terrible so on his 65th birthday we bought him a pocket watch and said good bye and thank you for your service. I don't think he understood the idea of the pocket watch, I guess you have to be American. I certainly have enough fertilizer from my horses. I'll try again and see how I do. We have something that looks like tiny lilies that grow wild everywhere,, they are beautiful but they smell like garlic, may it is garlic at one stage. Oh, well, I understand about the handyman. I hope he is doing OK.

I do believe lilies may be related in some way to onions, but I would have to check. But I have encountered small lily-like flowers that smell like onions or garlic, and there may be a number of varieties of them. I know people who grow garlic, and I'm not sure that it makes much of a flower. Your lilies sound a bit like the wild camas we have here, which the indigenous people ate the bulbs of, though I'm not sure of the smell. It is mostly blue and grows profusely in open plains. There are so many varieties of related plants, wild or hybridized by humans.

[carriej22]

Thought I would just update this thread instead of making another.

So today I had a great docs appointment. I am now officially aloud to have 1 month apps instead of every week! I am almost drooling thinking of the freedom :flapper:

My inflammation has been steadily dropping, from up around 50-60 down to 27 today; so he's happy. I'm happy that he's happy... hehe

Hopefully this means I'm coming around for good this time, and lately I have noticed a lot of differences in my body. My hair seems shiny again, my skin is looking clearer and I'm just overall looking more and more like my old self. Can't wait until I can fit into my old clothes! LOL

[carriej22]

Ok so time for one of Carrie's famous updates!

Sorry guys, I am not around too much. I find it hard to come on the forum sometimes, and I have been been very busy.

So here is where I stand.

No more prednisone, yay! I have been off it for over a month now. It is unbelievable how much better I feel. Even though I was on a low dose for months, I feel so much better.

My CRP is still high, it sits about 35-45. We don't know why. I am a bit concerned I have brain involvement (weird issues) and I guess I will bring that up the next appointment and see what he thinks. I'm probably being paranoid; but something in my head just isn't right (aside from the obvious, of course).

I am working two days a week at the salon and I finally found a job where I actually get paid to write. I am back doing my old job writing content for websites. The pay isn't awesome, but it keeps me busy and it's nice to have a somewhat normal income again juggling both jobs.

I am planting my garden and getting ready for summer... Might go fishing tomorrow to get some striped bass before seasons out, or some trout if that's what we catch. I'd prefer to catch bass since they are done next week, whereas trout we can catch until the fall. Might have to buy my salmon license and get some tags for those bad boys too. For anyone that fishes, Miramichi has one of the best salmon rivers in the world ;)

I have really been pushing myself and it's really improving. I know it's very difficult, and some days are hard but honestly now that I am busy I feel so much better. It was not easy, as some days I would come home from work and sleep 16 hours. However, now I am almost normal. Normal with tiredness, lol.

Hope all you guys are doing well and I will try to pop on more often.

[mishb]

Normal sounds fantastic - good on you.

It's so great to see you, not only happy, but feeling awesome as well.

Good luck with the fishing. Will you give them a kiss and let them go, or will you keep them for eating?

[JeanMarie]

Miramichi! You get to fish the Miramichi, wow, lucky you!!!!! I caught my only salmon on the Matane many years ago--don't know if I'll ever get back to try again. Those were the good old days.

Glad you are doing so well. Enjoy!!!!

Jean Marie

[carriej22]

Hi folks! Yes I am still around!

Hope you all are feeling well.

I have just been doing my thing. Monthly labs and the daily grind of work, sleep, repeat.

I have found out I have low hemoglobin and possibly some other things brewing. I have been feeling generally exhausted. My husband started a new job with the government and I was hoping it would allow some financial wiggle room, but it might take a year or so to catch up. We are doing ok though! Hopefully this fall I can go back to working just one job. One can hope!

Just waiting for spring so I can begin planning my spectacular vegetable garden. It gets bigger every year! Hoping I didn't bite off more than I can chew. It's essentially more than 50% of my backyard. Still lots (tons) of snow over here in northern nb though. Sigh.

Hope you guys have a great week.

[Pete]

Hey Carrie,

Good to hear from you!! Sounds like things are going reasonably well for you. Hope the financial situation improves soon.

How much snow do you have? I have friends in Boston who have most of two meters on the ground. :(

[carriej22]

We have atleast that. I'm only about 8 hours from Boston. I'm along the coast so we always get hit hard. There are some places in my backyard that are close to 10 feet.

The financial situation is definitely the best it has been. Just working off paying off some debt we acquired when I was sick. If we didn't have that debt we would be in good shape! We are hoping to consolidate it in the fall. If we can do that it will be great. We have been in our house 8 years so we should have enough equity that we can throw it in the mortgage.

[carriej22]

Hi!

Yes, I am still here!

I pop back and forth sometimes, and some of you have me on Facebook so you see me from time to time :)

Just wanted to update you guys healthwise. I have done pretty well for the past couple of years. No major flare since 2012, a few little bumps but nothing major. I work full time now at the salon, and have been doing pretty well symptom wise. Nothing too major, just some mild sore joints and sometimes if I work too long or too many hours I start to get a cough and things like that. Obviously like most I think we all deal with a certain level of fatigue and tiredness, but I have been able to manage pretty well. Sometimes I just crash when I get home ;)

I am battling a pretty bad flu though for two weeks now. Have been to the doc twice just so she can keep an eye on me. My chest is pretty filled up and I have a pretty horrible cough, but I think the worst is over. Seems to be hitting everyone in my town so I guess I just need to wait it out.

My doctor also noticed that I have a slightly underactive thyroid and will probably need to be treated for that in the future, but not quite yet.

I was struggling with red blood cell issues (basically anemic) for quite awhile but it seems to be picking up. Just started eating more protein and varying my diet a bit (adding in iron rich foods like beans). Took a couple of months, but she seems pleased with the results.

So overall, I can't complain too much. Waiting on an appointment with the Perinatologist (high risk pregnancy doc) to get some tests and to have a talk with her about babies. My rheumy seems to think everything is fine, but my GP wants to make sure I see her before getting pregnant, so I guess we will see. I turn 27 this year, and have been married for almost 4 years, so it's about time I think :p

[Pete]

Great news, Carrie! Hope the improvement continues.

[Jaha]

Really good news, you've come a long way. Wishing all the best with everything, keep up the good health.

[BookNut]

Glad to hear you have been doing pretty well!

[Alysia]

Hi Carrie, I am so glad that you are doing ok. you will be a wonderful mom, as you already are, to your gorgeous pets.
try this book: http://www.amazon.com/Alicia-My-Battle-Wegeners-Disease-ebook/dp/B00KAAL1AS
if you remember Barry Forshaw, he wrote about his wife's pregnancy and delievery in this book. If you search for his posts here I think that he attached the chapter about pregnancy somewhere. good luck !

[mishb]

Alicia and Barry welcomed a son into their little family last week, so congratulations to them :hug3:

Carrie it's great to hear that you are doing so well. A lot of us remember how sick you were in 2012

Good luck with this doctor appointment, it will be way better, I'm sure, than WG doctor appointments.

[annekat]

Great to see you on here, Carrie, even though I see you on Facebook. Everything sounds pretty good and normal, except for the flu, which will pass.... but nonetheless sorry you are going through that. Talking about babies is pretty exciting! Looking forward to hearing more on that. Also hoping your winter is not too bad. Here on the west coast of the US we continue to be unseasonably warm, and today is bright and sunny here, which of course means a little cooler this time of year. But spring is springing. Well, see you around!

[carriej22]

Thanks guys! I also remember being super sick in 2012. I do not want to be that sick ever again. It's like a whole year of my life is like a black spot. I don't have a lot of memory from that year at all.

I am excited/nervous. My GP kind of keeps reminding me to keep myself in check when it comes to babies. She seems awfully concerned and tight lipped about the whole thing, but I am just going to go with the flow.

It has also not been too bad of a winter here, mild, not a ton of snow. I'll take it :D

I am over the worst of my flu and starting to feel better which is also a relief.