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Spelunker 
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Joined: 08 March 2009
Location: At home.
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Posts: 1996
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 Topic: AI Family Affair Part II
Posted: 18 September 2009 at 9:19am |
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It was agreed that an ongoing update would be fun and informative---so here we are: a few weeks on. How are all of you? What innovative and creative things have you been doing? How are you fairing as the seasons prepare to change? What plans do you have for the next few weeks as the holiday season begins its approach?
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Do not merely survive: thrive.
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wanttobeRAfree
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Joined: 16 January 2008
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Posts: 4485
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Posted: 18 September 2009 at 9:42am |
I have been struggling with a rebellious 17 year old who 6 days into the senior year has gotten in enough trouble so is at home today- suspended and his graduation is in jeopardy. 
The stress of this coupled with me going pred free has led me to extra RA pain. Called RD to see if it could still be my body adjusting to no pred (been 1 month) or if I should just start a biologic. Told the nurse at her suggestion- NO prednisone! She left me a voice mail that the dr. said I should start taking 5 mgs of pred a day until my appt. late next month and we will talk about a biologic then. With everything else going on- I am not in the mood for a confrontation so I am just NOT taking the prednisone and feeling a little irritated that he has been telling me to start a biologic since day 1 and all of a sudden he doesn't have time to bring me in and get me started. Plus he said "talk" about a biologic- does that mean he changed his mind? I know I know- call and find out.
Summer is my favorite season and cold weather doesn't agree with me so I feel sad at this time of year. I have changed my decorations, door wreaths, table cloths, flower arrangements, etc.. to a fall theme.
Holidays I have not begun to think about yet.
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SnowOwl
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Joined: 13 December 2007
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Posts: 2651
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Posted: 18 September 2009 at 12:22pm |
Where is everybody, why so few posting anymore?
I'm planning on a new comforter for the bed, found a cotton throw printed with an Art Nouveau angel surrounded by Celtic knots and flourishes, am going to add a border, fill, back and tie-quilt it.
I'm sorry you feel blue as autumn approaches, Wannabe. It's my favorite time of year, I feel alive and enthusiastic when the days turn crisp and the fall colors gleam. I'd recommend you put up nice warm thick draperies, add some soft throws on the sofa and chairs, indulge in richly scented candles, and buy yourself some soft, thick lounging clothes and slippers for home wear. Cold weather is time to pamper yourself. I hear ya about the doctor not listening, my DH went through a few of those with his diabetes and DDD, it's SO annoying and insulting. I hope you can either get through to yours, or find someone who does listen. I also hope your rebellious 17 year old has an epiphany and realizes that if he doesn't graduate he won't be leaving home and becoming independent because he won't be able to find decent employment, and that being a bad-boy doesn't earn someone genuine respect from one's peers. I expect it'll be ok in the end though, he has a great mom!  Your loyalty, work ethic, and respect for others is just the role model he needs.
Edited to add, for Halloween next month I found a great big black candelabra with dangling crystals and bought several bright blood-red candles to put in it. It will be on the bureau that's in line of sight up the stairway from the front door, very dramatic, mwhoo hah haaaah. I think the neighborhood folks already think we're eccentric (us? NO you say), hee hee, we're a favorite house for trickertreaters.
Edited by SnowOwl - 18 September 2009 at 12:30pm
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RA, Sjogren's, asthma
MTX 25mg/wk, Relafen 750mg 2xdaily, folic acid, biotin, supplemental vit D, calcium, and "for women" formula multivitamin; Combivent as needed for asthma
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Alan
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Joined: 03 September 2006
Location: United States
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Posts: 699
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Posted: 18 September 2009 at 1:59pm |
Well, I'm still here, just haven't been posting much lately. The fall orchestra season just started so I'm driving to San Francisco twice a month for a 3 hr practice...my fingers are definitely stiff the next day. I'm also playing in our church worship band twice a week...plus practice...keeps me very busy. I'm doing pretty well on Orencia and a low dose of MTX...so far...though my hands and shoulders still hurt and are stiff in the morning into the early afternoon. My wife and I are flying first class to Washington DC at the end of October to a big company sponsored (and paid for) formal, black tie, affair at the Smithsonian...should be exciting.
I hope everyone is doing well and enjoying life as best they can!
Alan
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For You will light my candle; the Lord my God will enlighten my darkness. Ps 18:28
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rocckyd
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Joined: 26 January 2005
Location: United States
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Posts: 1212
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Posted: 18 September 2009 at 2:18pm |
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I haven't been posting, cause honestly, there isn't much good to say. School is kicking my you know what. As I mentioned before, due to budget cuts, we are teaching an extra class. I didn't realize how much I needed that downtime. I am having a really hard time. Saw the rheumy on Wed. He can tell that I am missing the mtx. Can't even think about starting it again until the repeat CT scan in November. The other two meds that I started per the Duke RD take months to kick in(don't they all???). I am much more swollen than usual. Saw the pain dr. on Thursday and he wasn't too happy either. He prescribed a new muscle relaxer due to my muscles cramping and being very tight. He said this is very common with joint inflammation. Of course, it wipes me out so I can't take it at work. My shoulders are also awful and I'm having a very tough time even writing on the board.
I go back to Duke on the 30th regarding my jaw. Hopefully they will have some ideas that don't include joint replacement.
Sorry to be so negative. I hate to post stuff like this so I just don't post much at all. I feel like I have just enough energy to work and come home. I have cancelled on a wedding and the VA Tech/Nebraska game this weekend. My chest feels awful and breathing hurts. This is what landed me in the hospital over the summer so I am just going to take it easy. I see the lung dr. next Thursday. Gonna take some of the "big gun" meds and curl up and do nothing. Fun Times!!!
Edited by rocckyd - 18 September 2009 at 2:18pm
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Rebecca
RA, Sjorgens: Currently taking Rituxan, Plaquenil, Sulfasalazine, Perocet, Prednisone, Skelaxin, PT for chest wall inflammation, oh...and that funky jaw!
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SnowOwl
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Joined: 13 December 2007
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Posts: 2651
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Posted: 18 September 2009 at 4:17pm |
Alan, how exciting! I'm so happy for you, that's neat.
Rebecca, please don't feel like you can't share, this is a support forum, it's why we're here. I'm sorry you're having such a rough go of it. I hope the "big gun" meds and curling up and resting over the weekend help, and that the doctors can get you back to a place where you can work and play both without such discomfort and worry.
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RA, Sjogren's, asthma
MTX 25mg/wk, Relafen 750mg 2xdaily, folic acid, biotin, supplemental vit D, calcium, and "for women" formula multivitamin; Combivent as needed for asthma
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pksmdrag
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Joined: 16 May 2008
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Posts: 73
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Posted: 18 September 2009 at 5:25pm |
Hi everyone! I hope this finds everyone doing better. WanttobeRAfree, I am sorry that you are having difficult times with your 17 year old. I'm not personally going through what you are, but I have two teenagers and I get frustrated at times. Like Snowowl, I like fall. I live in Connecticut so I really enjoy the change of seasons. I have been pretty stressed out lately and went for an even walk tonight (I usually walk in the morning). IT was so nice. The air was cool and crisp. There were several people that had fires going in their back yard or in their fireplaces. Anyway, I jsut really enjoyed my walk tonight and talking with a couple of my neighbors. Once the cold weather gets here, people don't like to come out and chat. I wish I were camping tonight. As Snowowl said to bring out the comforters, candles, throws, etc. - get cozy for the long cold winter. Alan, it sure sounds like you are keeping busy. Good for you. You and your wife should have a great time in Washington, D.C. I just think that is such an exciting area. So much to do and see. Will you have any extra time to do some other things? Rebecca - we all understand not wanting to post anything cause we don't feel upbeat. However, sometimes you just need to vent. What better place than to do it here where we usually get it??!! I finally feel pretty good and am trying to enjoy it before it changes. I have been bike riding on our new extended bike path and love it. There are several areas where you can't see any houses or roads, just nature. Last weekend my husband and I went about 26 miles. I just felt like I could ride forever. I hope to ride this weekend. My husband as well as both kids have been sick so I think I might be riding solo. We'll see. IT should be a very nice weekend around here. Well, I hope you all have a nice weekend wherever you are and that you find some relief from your pains and fatigue and family stresses.
Kim
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LinB
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Joined: 18 April 2007
Location: U.S & Mexico
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Posted: 18 September 2009 at 9:03pm |
Fall is arriving finally. The tree tops are just starting to turn yellow. It might be a late start to winter.....I can only hope.
We've been busy getting settled in and decorating the house. Seeing our old friends and having a great welcome back to Nevada. I hate to admit it but I don't miss the traveling at all. We are a little antsy and will be leaving Thursday for Las Vegas for 3 days.
I've been designing and making some jewelry for a show in November. I'll only have about 15 pieces ready but I can take orders and do commissions. Right now I'm ready to start using brass clay in my designs. I'm really excited about it.
Saw a new RD and boy did I hit the motherlode. I spent and hour and a half with her and she did the best rheumatology exam I've ever had. She was pleasant, looked me in the eye and most importantly she listened. A few problems with my lymphs and segs on my CBC and I have to drop Humira back to every 2 weeks instead of weekly. She increased my MXT and Sulfasalazine and will be adding another dmard in a month. We'll try this combo before I move on to Orencia. I want to try everything possible before I go up the med. ladder.
Have picked out dining room furniture and will pick it up next week. The house is coming together very slowly but that's ok cause I'm slow.
Like Snow, I'm starting to decorate for Halloween ( favorite day) and have just put out my collection of witches on the library table and hung my broom over the archway. We won't have any trick or treaters because we live in the country, 7 miles outside town - darn, I love to play with their little minds on trick or treat night.
Everyone enjoy your fall weather. Lindy
Edited by LinB - 18 September 2009 at 9:05pm
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We are all affecting the world every moment, whether we mean to or not. Our actions and states of mind matter, because we are so deeply interconnected with one another. Ram Dass
RA,Psa,OA
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waddie
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Joined: 10 October 2008
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Posts: 1559
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Posted: 18 September 2009 at 9:44pm |
Hey family, I am still clicking along. I feel awful for not posting or answering pm's  . It is nice to be able to come here and catch up. {{{{{Shug}}}}}, I wish you all good, soothing things with the peace and beauty that waning summer days have to offer. Wannabe, this too shall pass. Your son is going through a stressful time in his life. I am sure he is confused about just exactly what he wants to do, where he wants to go, how he is going to live and if you throw a little peer pressure and some hormones in there... well, you have rebellious teenage soup. Snow is right, you are a great mom and he will come around. he will hit an emotional growth spurt and realize just how much you love him and he won't want to disappoint you. My two went through this as well and they turned out to be wonderful, loving men, and so will your son, just keep talkin'! You are in my thoughts for some stress free days and I am humming for some peace for your son! Rebecca, I feel so awful for you! You must be exhausted! I am truly thinking of you and asking you get some relief, some how. Something will work for you, I just know it will. You have a lot of great folks pulling for you and you have a great team in place working hard. Don't feel bad about complaining, we all need to vent and this is a great, responsive place to do so. Huuuuuuuuuuuummmmmmmmmmmmming and  's! Alan, how exciting about DC! That sounds like a great trip! I am sorry you feel so bad after rehearsals but I so admire you for your perseverance in doing what you love. I am proud of you! I hope things continue to get better and better! Kim, your bike rides sound wonderful! You keep on going! Fall is a beautiful time to be out there riding and you must have some beautiful scenery. I am glad you are doing so well. Snow, you are just the sweetest person. You always have just the right words to sooth and comfort and you hardly ever complain! Your beautiful outlook on life is an inspiration and I thank you for being there... for everyone! I hope you are feeling well and the fall is extra gorgeus just for you! I am hanging in... I still have some rough visual issues, now being attributed to small embolism or TIA. But, my heart is beating strong and I am still breathing and I have so much love and support that I am blown away every time I think on it! I am a lucky gal! I celebrated a birthday on Sept. 11th, the best birthday ever! My RA is behaving well and I am starting cardiac rehab on Monday. Life is good and the roses smell great! Thank you all for the love and support you have offered and continue to offer, it keeps me strong! Waddie 
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 Never give up, never surrender!!!
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babs10
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Joined: 09 March 2008
Location: USA
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Posts: 4816
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Posted: 19 September 2009 at 11:15am |
Wantto.. it’s all about growing up.. Teens pull this and we stand firm…. All in all, I know you will be the strongest and he will be the victor when it is all said and done.. You will have ultimately taught him the best… Some of the best adults I know had a rebellious streak at one time…… And some had to fall far before they could pick themselves back up. *hugs* hang tough, dear.
LinB….. Love that you are so far out of “town” I would, at this stage in my life.. love it.
Leave me to me and mine ;) I am SO glad to hear about your RD.. I hope she proves to serve you very well!!
Rebecca… I can only imagine what a trial it is to have jaw pains.
I do wish we could feel okay about talking about our ills…Even among our most understanding co-suffers. Personally, I don’t consider anyone a whiner who also comes on and supports others in their troubled times.. That’s support AND commiseration!! ;)
Alan! DC is a very exciting town!! Enjoy it!
Waddie.. That’s a great update and you sound so positive. It is so easy to see why you have so much love and support
Shug.. YOU never stop amazing me with your incredible strengths.. We are blessed to have you to show us the way.
Like Snow and pks.. I like fall.. I like the crispness.. the cleanliness.. the colors of fall…. I have a wonderful ride to work with ALL the glorious colors of fall displayed on each side and before me as the highway winds through PA….. I LOVE IT.. I have sometimes stopped and taken pics of the beautiful colors…..
About me… I’m suffering mildly but enough to cause me to run to the RD for a cortisone shot.. I could barely walk.. It seems I angered the sleeping giant in my left knee when I pushed off my desk chair and hurt something.. It took him weeks to come to full fury but he was really angry!!! A shot and a cane and I am doing okay once again..
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When you are Real most of your hair has been loved off and your eyes drop out and you get loose in your joints and very shabby once you are Real you can't be ugly except to people who don't understand
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