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Medical Forum / Diseases and Disorders / Lupus / March 2009Is it time for a roll call?
Hi Y'all, Here's hoping that the lack of activity on the NG is because everybody is doing well and have not accumulated any more infirmities. So, how about it? Are you out there? Please check in and give us an update on things in your life. Good news is always welcome! Later, George I'm 'here'.... glad to see you too George... I think people are hoping for an upturn in the economy and their health... and maybe some positive posting would help ?! Nothing new... time of year I think...a long winter this year so far... snow the other day again!! we never get snow lol... hopefully spring will come next month or 2 and warm things up, take the damp out of the air and make everyone 'looser' and ready to spill... come on peeps... let's hear from you all who lurk but don't post... newbies are welcome and lotsa info from the oldies for you... just ask!  Signaturehugs, Shelagh Lupus - Invisible In Plain Sight @ http://members.shaw.ca/systemiclupus > Hi Y'all, > [quoted text clipped - 9 lines] > > George > I'm 'here'.... glad to see you too George... > I think people are hoping for an upturn in the economy and their [quoted text clipped - 5 lines] > let's hear from you all who lurk but don't post... newbies are welcome > and lotsa info from the oldies for you... just ask! Hi Shelagh and all, It is good that we didn't receive any bad health news with this request for updates. Our family has been hit hard with this economy thing. One son in law and two sons were "let go". Son in law and one son bounced back and found something else to do, too soon for the other one. On a happy note, we are having a beautiful winter! Temps hanging in the 80's. It is real chamber of commerce weather... The forecast is for some cooling into the 70's and maybe even a bit of rain. I hope so. The spring training (Cactus league) are going great guns. People from all over are here to welcome "the boys of summer". On the health issue, I am going through some new stuff. Too soon to know much but I will share when I know more. Thanks for the responses. Let's keep it up! George > I'm 'here'.... glad to see you too George... > I think people are hoping for an upturn in the economy and their [quoted text clipped - 5 lines] > let's hear from you all who lurk but don't post... newbies are welcome > and lotsa info from the oldies for you... just ask! Hi Shelagh and all, It is good that we didn't receive any bad health news with this request for updates. Our family has been hit hard with this economy thing. One son in law and two sons were "let go". Son in law and one son bounced back and found something else to do, too soon for the other one. On a happy note, we are having a beautiful winter! Temps hanging in the 80's. It is real chamber of commerce weather... The forecast is for some cooling into the 70's and maybe even a bit of rain. I hope so. The spring training (Cactus league) are going great guns. People from all over are here to welcome "the boys of summer". On the health issue, I am going through some new stuff. Too soon to know much but I will share when I know more. Thanks for the responses. Let's keep it up! George > I'm 'here'.... glad to see you too George... > I think people are hoping for an upturn in the economy and their [quoted text clipped - 5 lines] > let's hear from you all who lurk but don't post... newbies are welcome > and lotsa info from the oldies for you... just ask! Hi Shelagh and all, It is good that we didn't receive any bad health news with this request for updates. Our family has been hit hard with this economy thing. One son in law and two sons were "let go". Son in law and one son bounced back and found something else to do, too soon for the other one. On a happy note, we are having a beautiful winter! Temps hanging in the 80's. It is real chamber of commerce weather... The forecast is for some cooling into the 70's and maybe even a bit of rain. I hope so. The spring training (Cactus league) are going great guns. People from all over are here to welcome "the boys of summer". On the health issue, I am going through some new stuff. Too soon to know much but I will share when I know more. Thanks for the responses. Let's keep it up! George >Hi Y'all, > [quoted text clipped - 3 lines] >So, how about it? Are you out there? >Please check in and give us an update on things in your life. Still here. Enjoying family visits. Not enjoying having so much stuff under my desk that there's no room for my feet!! SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> Present. Everything still the same here. Wishing Spring would arrive. Preparing for a trip back to El Paso in April to celebrate my mom's 80th birthday with her and the rest of my family. Anxiously awaiting a turn for the better in the economy so husband's hours return to full time and son can find employment. (a familar story to many of us) Sherry > Hi Y'all, > [quoted text clipped - 9 lines] > > George > Hi Y'all, > [quoted text clipped - 9 lines] > > George A lurker with a new lady who has Lupus so I watch the group to learn. If I see something interesting I forward it to her. Group is very good now that I filter the nut who rants about iron. Lou In message <49AC8CFE.9030705@invalid.com>, LouB <LouB@invalid.com> wrote [ >A lurker with a new lady who has Lupus so I watch the group to learn. >If I see something interesting I forward it to her. >Group is very good now that I filter the nut who rants about iron. Perhaps he's actually a literate sea squirt - which apparently use vanadium to carry oxygen around their bodies instead of iron. SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> > Hi Y'all, > Here's hoping that the lack of activity on the NG is because everybody is > doing well and have not accumulated any more infirmities. > So, how about it? Are you out there? > Please check in and give us an update on things in your life. > Good news is always welcome! I haven't died much lately. Does that count? --Bill Thompson > So, how about it? Are you out there? > Please check in and give us an update on things in your life. Pluses and minuses. Was in hospital in February - dehydration due to flu and pneumonia. Slow recovery. More tests pending. May need puffers dor the duration. Switched gas stoves. This one lights when the electric is off, but has problems with the top burners, but they work. Oven light works. (the other had a short) The other had different problem with top burners, but 3 worked. Oven worked as well but there was a gas leak. I Use stove for heat when power is out . Almost died in November. Fell asleep with stove on. So I had to heat with a window cracked open all winter. Costly ! Skipping story of how I bought a used digital that does not light when electric is off. Lost a lot of money due to my mistake. I don't like digital - have to reach over burners to set (oven) on the panel. All manner of car problems with old car - does not seem to like very cold weather we've had all winter. Frozen locks, frozen doors; call for boost, call for tow, now it seems there's a leak or leaks in radiator. Waiting to hear when & how much to fix. Hospital told me which is best bandage for the leaking elbow. Awaiting quotes so I can hopefully get assistance. Swabs came back negative. TB was discussed in ER but that doctor did not know about elbow and I forgot to ask the swabber to check for TB. Chest x-ray showed no sign of TB. Thanks for running roll call, George. I read almost every day. j Hi J, I'm glad you have checked in. It seems you have more than a plate full this winter. In His perfect creation there is supposed to be a perfect balance of light & dark, bad & good, etc. Here's hoping your blessings are just around the corner. Some of the experiences you describe are very, very dangerous. Do you have any family or other support source to help you through these trials? I certainly hope so. I am curious about your "leaking elbow". Can you elaborate? Of course I am experiencing this currently and hope we can collaborate. Thanks again for checking in. George >>So, how about it? Are you out there? >>Please check in and give us an update on things in your life. [quoted text clipped - 30 lines] > Thanks for running roll call, George. I read almost every day. > j Hi J, I'm glad you have checked in. It seems you have more than a plate full this winter. In His perfect creation there is supposed to be a perfect balance of light & dark, bad & good, etc. Here's hoping your blessings are just around the corner. Some of the experiences you describe are very, very dangerous. Do you have any family or other support source to help you through these trials? I certainly hope so. I am curious about your "leaking elbow". Can you elaborate? Of course I am experiencing this currently and hope we can collaborate. Thanks again for checking in. George >>So, how about it? Are you out there? >>Please check in and give us an update on things in your life. [quoted text clipped - 30 lines] > Thanks for running roll call, George. I read almost every day. > j Hi J, It is good to hear from you. It seems you have more than a plate full this winter. In His perfect creation there is supposed to be a perfect balance of light & dark, bad & good, etc. Here's hoping your blessings are just around the corner. Some of the experiences you describe are very, very dangerous. Do you have any family or other support source to help you through these trials? I certainly hope so. I am curious about your "leaking elbow". Can you elaborate? Of course I am experiencing this currently and hope we can collaborate. Thanks again for checking in. George >>So, how about it? Are you out there? >>Please check in and give us an update on things in your life. [quoted text clipped - 30 lines] > Thanks for running roll call, George. I read almost every day. > j > It seems you have more than a plate full this winter. In His perfect > creation there is supposed to be a perfect balance of light & dark, bad [quoted text clipped - 6 lines] > I am curious about your "leaking elbow". Can you elaborate? Of course > I am experiencing this currently and hope we can collaborate. You're a blessing to us, George. Your words are so comforting. No, is the answer if you mean people nearby, able to help. I don't think my problem is anything like yours. There's a "sinus" (a pouch like thing in the back part of my elbow (inside) and fluids collect there. I'm told the sinus is a complication of bursitis. The GP and I conjecture that it's inflammation fluid leaking out, but sometimes there's a blob like tissue as well. Theory being the sinus (hole caused by a surgeon injecting steroid in that area last year) cannot heal due to the constant exposure to inflammatory fluids. So the fluid leaking out relieves the bursitis pain, but I still have (sometimes) crippling pain from tendenitis (which causes my forearms and hands to cramp. So I'm limited on how I can use my hands and wrists (and how long), before I'm stopped by the cramping and have to rest and ice. Maybe Blades is right and your blood vessels are leaking? As we age our conditions tend to get worse and we're less able to tolerate medicines we used to. I suppose the test of time will tell, since you've stopped the Plaquenil now. Sorry, I can't help. J > You're a blessing to us, George. Your words are so comforting. > No, is the answer if you mean people nearby, able to help. [quoted text clipped - 17 lines] > Sorry, I can't help. > J Thanks for your response J. Stopping the Plaquenil doesn't seem to be getting the desired effect. I still have the random leaking with discoloration and deep redness on my entire right hand and forearm. I am convinced that what I have is vasculitis and am gathering collateral material to share with all my medical professionals. It is unfortunate that you do not have family close by. Maybe when the weather and your health permits you can do some networking and investigating to find someone or someplace to call on when you need to. I hope so.... Please stay in touch. Later, George > You're a blessing to us, George. Your words are so comforting. > No, is the answer if you mean people nearby, able to help. [quoted text clipped - 17 lines] > Sorry, I can't help. > J Thanks for your response J. Stopping the Plaquenil doesn't seem to be getting the desired effect. I still have the random leaking with discoloration and deep redness on my entire right hand and forearm. I am convinced that what I have is vasculitis and am gathering collateral material to share with all my medical professionals. It is unfortunate that you do not have family close by. Maybe when the weather and your health permits you can do some networking and investigating to find someone or someplace to call on when you need to. I hope so.... Please stay in touch. Later, George J, I'm so sorry that your health issues have not improved and that you are still having to deal with the pain and the limitations on you! My husband has a place on his knee (inside and is honeycombed) that opens up and leaks out. The stuff it leaks looks like pus but all lab and cultures are neg. It is very painful and easily aggravated. After injections of steriods he now has several more spots that open up or leak. It has been a nightmare trying to find out what it is, what caused it, and how to treat. We have been dealing with it for yrs and they have no answer yet. Hugs, Sherry >> It seems you have more than a plate full this winter. In His perfect >> creation there is supposed to be a perfect balance of light & dark, bad [quoted text clipped - 36 lines] > Sorry, I can't help. > J > You're a blessing to us, George. Your words are so comforting. > No, is the answer if you mean people nearby, able to help. [quoted text clipped - 17 lines] > Sorry, I can't help. > J Thanks for your response J. Stopping the Plaquenil doesn't seem to be getting the desired effect. I still have the random leaking with discoloration and deep redness on my entire right hand and forearm. I am convinced that what I have is vasculitis and am gathering collateral material to share with all my medical professionals. It is unfortunate that you do not have family close by. Maybe when the weather and your health permits you can do some networking and investigating to find someone or someplace to call on when you need to. I hope so.... Please stay in touch. Later, George > Stopping the Plaquenil doesn't seem to be getting the desired effect. I > still have the random leaking with discoloration and deep redness on my > entire right hand and forearm. I am convinced that what I have is > vasculitis and am gathering collateral material to share with all my > medical professionals. I forgot this http://dermnetnz.org/treatments/hydroxychloroquine.html Laboratory monitoring Periodic blood counts are recommended as antimalarial medications can rarely result in dangerous reduction in cell counts. * Leukopaenia (low white cells) * Thrombocytopaenia (low platelets) * Aplastic anaemia (all blood cell counts are low) It is also wise to check renal and liver function before treatment and from time to time. J [] George, these aren't life's biggest problems but (a) your email address denies you exist (b) I'm seeing duplicate copies of the postings you made here a day or two ago. Is it your ISP or mine that's having a bad hair day? SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> > [] > > George, these aren't life's biggest problems but (a) your email address > denies you exist (b) I'm seeing duplicate copies of the postings you > made here a day or two ago. Is it your ISP or mine that's having a bad > hair day? I too am getting duplicates in my OLE of postings, Andy... can NOT figure out what the "H" is going on... and not just postings but also random emails.... go figure? anyone else?! Signaturehugs, Shelagh Lupus - Invisible In Plain Sight @ http://member.shaw.ca/systemiclupus Andy, you are correct! I am a figment. <G> I continue to use this old Netscape engine because I am not computer literate enough to change to something newer. The mail service stopped when Netscape support did some time ago. It works good for newsgroups though. Well, I guess it does, I've never had anything else... My E-mail address is GEParton@aol.com if anyone needs it. I am not overjoyed with AOL right now either but after 15 years it is tough to change the address. As for the duplicates you are seeing, I don't have a clue. Later, George GEParton@aol.com > [] > > George, these aren't life's biggest problems but (a) your email address > denies you exist (b) I'm seeing duplicate copies of the postings you > made here a day or two ago. Is it your ISP or mine that's having a bad > hair day? >Andy, you are correct! I am a figment. <G> > [quoted text clipped - 7 lines] >change the address. As for the duplicates you are seeing, I don't have >a clue. They seem to have identical text, but different times & dates. That means that at some point an original posting is being duplicated. I'd suspect an ISP problem somewhere - if they forward your postings successfully along the chain, but do not get back a "received OK" message, they would try again. And again. In which case, they are probably doing it to everybody, so plenty others will be complaining - so lie back and enjoy it! SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> >> Andy, you are correct! I am a figment. <G> >> [quoted text clipped - 16 lines] > In which case, they are probably doing it to everybody, so plenty others > will be complaining - so lie back and enjoy it! Looks like it was a one day event so don't worry about it. Lou > In message <sbCsl.91302$2h5.68...@newsfe11.iad>, George Parton > <GEPar...@netscape.net> wrote [quoted text clipped - 8 lines] > Andy Taylor [Chair, N E Lupus Group]. > <URL:http://www.northeastlupus.org.uk> Hi to the group. A lot has been going on with my lupus. About 3 weeks ago my Prednisone was increased by four fold and given prednisone I.V. Have a really bad rash and blisters on my hands and forearms. This morning at 2 A.M. it got worse. Waiting to call the doctor. Think the whole thing is psychological because of stress. Two weeks ago we got a darling puppy we named Molly from the humane society. At the time we got her they didn't feel it was safe to have her spayed until she started gaining weight . She did gain weight 3 #s in two weeks. When we had the vet give her a thorough check up they found she was quite pregnant. She is scheduled for surgery tomorrow. Molly is a small poodle very cute and funny and bright and loving that someone dumped on a field along with her brother and sister. As employers with no business at our Inn we have had to shorten the hours of our 10 employees and we feel so guilty to have to cut hours on some employees that have been with us for 23 years. Do you think that this enough stress to make my lupus overreact? By the way I am so glad to see everyone on line again. Hoping to hear from Janers, Judith B J Beverly and Wily. Hugs ruth "Ruth" <ruthtay@mcn.org> wrote in message> <SNIP> <quote> By the way I am so glad to see everyone on line again. Hoping to hear from Janers, Judith B J Beverly and Wily. Hugs ruth </quote> Oh.....HE** YES!! half of what you are going through would set me off... give yourself a break of some kind... a mental health holiday.... something! and be kind to yourself.... and your body! If you don't look after you, no one else will!! love and hugs and a load of serenity coming your way.... try to slow down and don't worry over those things that you can't change... change the things that you can and just pray for the wisdom to know the difference so your load is lightened!! Shelagh "Ruth" <ruthtay@mcn.org> wrote in message: <quote> Do you think that this is enough stress to make my lupus overreact? </quote> Again, He** Yes... this was the quote that should have been on the previous post, but I was day dreaming of the old chats we had with all the oldies and so I copied and pasted the wrong section.. ho-hum... could I be any dumber (?!) Also found this archive of excellent transcripts of chats at LFA.org site here: http://tinyurl.com/atkrj9 with some excellent ones for newly diagnosed patients and for tomorrow, Wednesday, march 11 at 12 noon pacific time, 3pm eastern time, there is a chat with a nephrologist on 'kidneys and lupus' .. should be good... just go to the site link below, and 'connect with a nickname'.. this is the page to have open 10 minutes ahead of the time of the chat: http://www.lupus.org/newsite/pages/chat_login.html Signaturehugs, Shelagh Lupus - Invisible In Plain Sight @ http://members.shaw.ca/systemiclupus > So, how about it? Are you out there? Bj's not, but I'll update. > Please check in and give us an update on things in your life. Daughter went out to BC to visit for 2 weeks. BJ was thrilled to have her there. Disc on BJ's sacroiliac is very degenerated. Severe pain spisodes when sitting. She's on Celebrex for "everyday" pain, but also had "rescue" heavier duty for the sacrloiliac. She refused to believe that surgery might be helpful so won't request othopedic consult. Flowers are blooming out here way. She's thrilled. Ours might be a long way yet. Her doctor added Zantac to her list of medcines, including pantoloc which, after all these years of discomfort and panic runs for the bathroom, seems to be solving her gastro problems. Her hubby had first health checkup. His PSA was quite high. Recheck 3 months later, it's rising higher. I don't want to conjecture but am very worried. They're awaiting date for biopsy. Two different doctors (GP and then urologist) found nothing on DRE. Please cross your fingers for BJ and her hubby. It would be awaful if he has cancer, when so many other problems seem to be getting fixed but some still outstanding. He has to pick her up in his arms when the sacroiliac flares up to get her to a place to lie down, so he needs to be healthy to help her. J Wow, your plate has been full J! So sorry to hear about all your continuing trials!! And yet 'they say' that you are not given more than you can handle... hmmmm... So then, your shoulders must be very broad (!?) Wishing for better days for you and a short winter and long spring/summer and fall seasons..... I too, have spoken with BJ and she remains in good spirits even with all that is going on! She too has had a great deal of tribulations and still keeps on going....a strong woman! (btw, I am with her on the spinal surgery question; after 3 major spinal 'rebuilds', I am still on heavy meds every day of my life to keep my 'quality' of life going ... so it is a serious decision to make and then undertake and it isn't for everyone.....) Wishing everyone 'here' good health and happy days ahead! How bout we get some prayers going for BJ's MOTH !..... I am a firm believer in the power of prayer so I'll start ......... Signaturehugs, Shelagh Lupus - Invisible In Plain Sight @ http://member.shaw.ca/systemiclupus "J" <tantimpor@itantimpor.inv> wrote in message > Bj's not, but I'll update. > [quoted text clipped - 27 lines] > to a place to lie down, so he needs to be healthy to help her. > J [ >(btw, I am with her on the spinal surgery question; after 3 major >spinal 'rebuilds', I am still on heavy meds every day of my life to >keep my 'quality' of life going ... so it is a serious decision to make >and then undertake and it isn't for everyone.....) My doctor said to me "if you are capable of getting here and asking if you need surgery, you do not." SignatureAndy Taylor [Chair, N E Lupus Group]. <URL:http://www.northeastlupus.org.uk> "Andy" wrote in message Shelagh >> wrote >>(btw, I am with her on the spinal surgery question; after 3 major >>spinal 'rebuilds', I am still on heavy meds every day of my life to >>keep my 'quality' of life going ... so it is a serious decision to make >>and then undertake and it isn't for everyone.....) > My doctor said to me "if you are capable of getting here and asking if > you need surgery, you do not." Exactly! my case was a bit unusual as I was born with spondilolysis that developed into spondylolisthesis level II age 15 and then level IV at 18, and an emergency fusion was necessary to keep my legs functional.... and me out of a wheel chair for the rest of my life as well as remaining 'continent' with my bladder etc... needless to say, a very nasty situation could have developed without it. Then at age 25, 2 more emerg. surgeries were necessary due to a spinal anaerobic abcess (they figure it had gotten in during the first surgery at age 18!!) that had eaten away the lumbar vertebrae from 2 to 5 and destabilized the L5/S1 fusion I had in there and it all collapsed into my abdomen which was extremely painful.... ... and so had to have both anterior and then posterior fusions done at once, well done 5 weeks apart, and then I spent almost a full 6 months in hospital, immobile (literally tied down and turned electronically), following it... then a year in a custom brace from shoulders to hips to make sure the bone all fused solidly. It all took and my spine is now considered to be both 'stable and viable' but is developing scoliosis above the fusions and so the pain is there ... and unrelenting... and labeled degenerative and will only be getting worse, not better in 'the specialists esteemed opinions' ....... and so, to take it very seriously and question the necessity of the surgery anyone may suggest is a big must IMHO! If you are still walking and functioning, even with some pain, there are alternatives.... BJ is trying physio and massage right now.. and I am hoping they will give her some help with her situation and ease her pain... back pain is one of THE worst pains I have found in my 56 years! Hopefully she will find an answer that doesn't involve invasive techniques and that will take away her pain for her! Signaturehugs, Shelagh Lupus - Invisible In Plain Sight @ http://member.shaw.ca/systemiclupus |
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