Guest guest Report post Posted December 25, 2003 HI Donna .. I sat yesterday at the window for the longest time watching the eagles .. swooping and circling .. at first they were very very high in the sky. I heard them before I saw them. I had to get out my binoculars to watch them. But as I watched, they came lower so I no longer needed to hold up the binoculars to watch them .. good thing .. smiles .. binoculars are heavy. I have had asthma all my life. I remember several years ago complaining about having asthma and my grandmother telling me, " You're young .. you can deal with it. Quit complaining it could be worse. " Oh .. how right she was .. I wish asthma was all I had to deal with now. Between the heart attacks .. diabetes .. the lupus .. the fibromyalgia .. the asthma .. the diverticulitis .. and now this degenerative disk disease with the back and neck pain .. I would be oh so grateful if asthma was the only thing I had to worry about. But .. I am alive .. still kicking .. smiles .. just not as high! So that in itself is a blessing. I cherish even the smallest of blessings now a days! Bright Blessings to you .. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 25, 2003 , Ralph and I have to pay, 5,15 and 30 for one month of meds 3 months is 15, 45, 90. I would rather just get them for the reg, 5, 15 and 30. Thank God most of our meds are 5 dollars with 2 at 15 dollars and 3 at 30 dollar- Plus our insurance makes us try the new over the counter meds for all our expeniseve drugs.. then after we get sick from not getting our meds they will let us have them... I'm ready to hand them. lol Carol From: (Brat) To: LUPIES Sent: Thursday, December 25, 2003 8:24 AM Subject: Starting the first of January I will have to start paying my co-pays on my meds by tiers too. I've never had to do that before. It has always been $5.00 for three months of generic and $10.00 for three months of brand name. I think I'm going to be having a little culture shock come next month. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 26, 2003 , I would have insisted on them NOT letting you go home. While I don't enjoy the hospital, I would not take a chance on the lipase being so high. I hope your pacreas takes a vacation and doesn't flair up anymore......if it does, I would get your butt right back in the hospital!!!! Rest easy! Love, Becky Weston wrote: Now, for the rest of my story. I had done well pain/nausea wise on both Christmas Eve day, Wed., and Christmas Day, Thurs. I steered clear of meat and ate very light. Thought I had finally found the secret to staying away from the ER. I should have known that sometimes there is no secret and it just doesn't matter what you do or do not eat. When you have cp, you are sometimes going to have bad attacks no matter what you do. I was in bed and almost asleep when the pain hit around midnight. I barely made it to the bathroom before throwing up. This was a 10+ attack and I was in so much pain I could barely move. Bud had just fallen sound asleep and was in a deep sleep. I called his name over and over (from the foot of our bet) and he didn't move a muscle. I finally had to make my way to the bed so I could touch him to wake him up. After throwing up a few times, I managed to get zofran and oxycodone down with a sip of water. After laying curled in a ball on the bed for a few minutes the pain improved for just a bit. However, just a few minutes later, it was back to a 10+, so the ER was calling me! We tried to go to the local hospital (5 minutes away) but found out the ER doc I'll filed a complaint against was there and I just said, "Never mind. We'll go to Crestwood in Huntsville." We made the 45-60 minute treck with me in misery. They got me in immediately and it wasn't that long til the doc had the nurse give me a shot of dilaudid and phenergan. She accessed my port a cath, drew the blood, and then started an IV at 400 cc/hour. She had done the blood pressure test to see if I was dehydrated and probably was because of the drastic drop in my blood pressure standing vs sitting. It didn't take long for the shot to kick in and I fell asleep since it's about 3 a.m. at this time. Around 5 the doctor came in and told me he was letting me go. I assumed all my labs were okay and I was much better, so going home sounded good to me. I asked if he would give me one more dose of med for pain and nausea before I left so I could get a few hours sleep before needing to take oral meds. They gave me another shot of dilaudid/phenergan. The nurse told me he wanted it given IM vs IV because it would last longer. No problem and the pain that was at about a 5 was quickly down to a 2 (about as good as gets for me). I was ready to go and asked for a copy of my labs. They were not horrible, but they were not normal either. My lipase was elevated to 665, one liver enzyme, AST, was 110 (almost 4 times normal), total protein, globulin, RBC, HGB, and HCT were all low. When I saw that, I told the ER doc, he should call my internal med doc because even though I was much better at that point, that from past experience, if my lipase was elevated, as soon as the shot wore off and I even began clear liquids, I'd be back at the ER. The ER doc said, "but you said you were feeling better". I told him I was but I just didn't want to have to come back a few hours later. I could tell he wasn't happy (but he was nice enough) but he said he called my internal med doc and the internist said that since i was feeling better we shouldn't go by the numbers, we should go by my symptoms and since I was better I should try to make it at home. I agreed that I would give it my best shot at home. They told me if I got worse again to come back. I decided I will do nothing but clear liquids for the next day or two and see if I can manage with just my oral meds. I am scheduled to have another celiac plexus block on Monday. The hope is that even though the first one didn't really do much to help, the second one will do more. I called both my internist's office and my GI/Hep's office and both offices are closed today. It ends up that my GI/Hep is the one on call for his group this weekend. I asked the answering service to have him call me so I can tell him what's going on. It was 9 a.m. when I called the answering service and I haven't heard from him yet. I am hoping that if I do get worse, he will do a direct admit and not make me go back through the ER. I was given the shot of dilaudid/phenergan at about 5:30 a.m. and it is wearing off, but it lasted longer than I expected. I've had only ice chips and a popsicle, but they've stayed down. I went ahead and took my morning meds when we got home at about 7 a.m. The meds included MS Contin 30 mg and phenergan 25 mg tablet. I am allowed 3 MS Contin daily and also 4 oxycodone 5 mg per day. I'm going to take an oxycodone and another phenergan tablet in hopes of keeping the pain/nausea at bay. My last two hospitalizations, my amylase and lipase were normal. That's when both the GI and internist told me that since I have CP, my enzymes may never elevate again so we have to just go by symptoms. My amylase has not been above normal since Oct 2002. My lipase has not been elevated since August 2003. Since Oct 02, my amylase has been almost dead center normal at around 45-55. This time it was 73, not above normal but higher than it has been in over a year. I don't know if I'm over reacting, but from past experience, I really feel that since my lipase is elevated, I probably need to be on IVs and NPO for at least a day or so. Hopefully I am wrong and I'll manage fine with my clear liquids and oral meds. Just wanted to get an opinion from the group. thanks, "The LUPIES Store" Come check out our store... http://www.cafepress.com/thelupies "The LUPIES Web Page" http://www.itzarion.com/lupusgroup.html "The LUPIES online photo albums!" Check out what your fellow Lupies look like... http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 19, 2004 - Did you get as fond of yours as I am of mine? I actually proposed to it last night and am thinking about who to invite to the reception and what music to play. Any ideas on the subject? "Chains...My baby's got me locked up in chains" or "Tie a Yellow Catheter 'round the Old Oak Tree" Hmmm. Although it hasn't given me an answer yet, I'm hoping !!! (Barbara who is being waaaaay good...only went to the bank and the dump and did a load of laundry in my spanking new dryer....will now "chill")KM86@... wrote: Barbara Enjoy your relief, but please don't overdo it. Definitely sounds like he's being permissive. When I had my continuous catheter, I could only have it for a week. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 19, 2004 Hmmmm. Maybe it was the concentration or something. Mine has bupivicaine, fentanyl and clonidine. Barbara KM86@... wrote: Barbara It had Marcaine (Bipuvicaine) and Fentanyl in it. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 25, 2004 There have been a couple of posts lately that have been, at a minimum, insensitive and petty I have to agree with you Barbara, though I've kind of let it slip by. I also have to ask that people remember that there are no definitives in RSD. What works for one will not work for another, and your experiences will always vary from others. We are NOT Doctors here, simply a support group, and our experiences cannot be taken as medical advise of any type. Thanks, Jo Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 10, 2005 I hope it picks up I'd like to meet some new people. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 24, 2006 , With the Peace Corps, I don't think the in-depth look into things CHARGE just has to do with the syndrome. My non-CHARGEr has spent time in Ghana and worked through World Teach (I think that's the name - it's through the Kennedy School in Cambridge, MA) on an isolated island in the S. Pacific.. She had to have one heck of a physical. Luckily, my brother knew the ex-head of medicine for the Peace Corps in Africa, so we were able to get all sorts of information. By the time E. headed to the Pacific, we'd fought (and I do mean fought) to put together a year's supply of disposable syringes, various prescription drugs because she wouldn't necessarily have access to doctors. From her friends' experiences, I think you'll need to do the identical thing with Peace Corps. When you find out where you're going, please drop me a line. I can put you in touch with who probably has friends who've been to the same area. As a parent, I must tell you that this sort of thing is nerve wracking (jelly fish stings, burns, creepy guys harrassing E.), but she gained absolutely endless confidence and learned - and gave - one heck of a lot. So, go for it. Martha Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 11, 2006 Good I'm glad you are doing okay!! I was scared too. You will be fine!! Do you have any help for when you get home? I had my Mom with me for the 1st week. She was a huge help. I was just tired and didn't want to be around food. You will be okay. ;D It will be so worth it especially when you start losing!! We are here if you ave any questions. OXOXOX > > Thanks, . I feel like I am content with my decision to have this > surgery, but still scared to death! I think I'm more worried about coming > home, feeling crummy, and regretting that I did this. > > I joined a support group and got a lot of information from the members on > Friday night - stuff I didn't know even after reading everything I could get > my hands on - so hopefully, having them to rely on will be helpful in the > time frame after my surgery. > > Thanks again! > > See Our Latest Family Pictures and Blogs > www.skamarakas.com > www.upallnightgaming.com > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 17, 2006 That's a great Goal !!! I look forward to those kinds of things myself!! " O. " wrote: I love your new pix. My family does the dirt bike thing too. My husband and 8 year old ride the 2 wheelers and my 3 year old and I ride the quad. He will start on the PW 50 this winter and I'll be able to get a dirt bike!! My ultimate goal (material goal) of WLS. Thanks for sharing!! Hugs!!! --------------------------------- Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 12, 2007 I'm still dealing with extra pain and pain meds that aren't strong enough to help, but I guess that this is a new stage and I just have to accept that t his is the new " me. " At the same time, with this new realization, I'm trying not to let it depress me. How are you now? Love and gentle hugs, Debi/So.Cal.-54 In a message dated 11/12/2007 7:56:13 A.M. Pacific Standard Time, herbal7@... writes: Hey there, How are you? Hope you are doing alright. Sounds to me though like you and I are in a bad flare and just trying to make it through the day. My back is hurting so badly it is hard to walk around. I have been doing very little this past 2 days. Hope things improve for you soon. Hugs, ************************************** See what's new at http://www.aol.com Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 12, 2007 I'm still dealing with extra pain and pain meds that aren't strong enough to help, but I guess that this is a new stage and I just have to accept that t his is the new " me. " At the same time, with this new realization, I'm trying not to let it depress me. How are you now? Love and gentle hugs, Debi/So.Cal.-54 In a message dated 11/12/2007 7:56:13 A.M. Pacific Standard Time, herbal7@... writes: Hey there, How are you? Hope you are doing alright. Sounds to me though like you and I are in a bad flare and just trying to make it through the day. My back is hurting so badly it is hard to walk around. I have been doing very little this past 2 days. Hope things improve for you soon. Hugs, ************************************** See what's new at http://www.aol.com Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 13, 2007 , I too have a herniated disc in l4 and l5. Some days I think that is where the majority of my pain radiates from. When I walk my legs go numb, when I sit my legs go numb and the pain in my back is just horrible. My Neurologist ordered the MRI of my spine in Sept 07 and the radiologist said spine was fine, found nothing. While I was at my appt with Neuro doctor he found it!!! My nerves are severely pinched he stated that my nerves have about .4cm to go through and I had an EMG done and it showed that my left side is receiving but my right isn't getting them. I am just one big messed up person. My neuro suggested swimming for my back so I joined a low impact water aerobics class at our local YMCA. It has helped both with the back and the fibro. I also have some degenrative stuff happening. I don't want surgery, but if the pain isn't better by summor 08 I am going to opt for surgery. On top of everything else I also suffer from major depression and panic disorder. There are days that I don't want to leave the house and just going to the grocery store when it is busy puts me over the edge. I am trying to work through all these issues with meds but I am to the point now I take about 12 pills in the morning and about 6 at night and I have nothing for pain. I do have another appt with a different pain management doctor next wednesday but until then I am in pain everyday. I can't sit stand or walk for very long. Oh my gosh I have rambled.....sorry. Just wanted to say I feel your pain with the back issues. Debra B Gladewater, Texas Re: The monster and back problems -- delurking I have l-4 and l-5 problems and they were herniated and fused by themselves. I avoided the surgery and am glad I did. i live everyday in pain also. You learn to adjust and live life around it. I hope whatever choice you make, it all turns out for you. Melody <sunshineangel@ gmail.com> wrote: Thinking of you Teri! Teri Wallner wrote: > Good morning. > > > > I have fibro.diagnosed 3 years ago, but have dealt with it for many years. > I also don't seem to have a day that is pain free - the level just varies. > My meds take the edge off and allow me to function day to day, but it's > always present. I've kind of learned to just accept that it's a fact of > life for me and have had to make various lifestyle changes as I'm sure many > of you have too. I found a way to work from home doing transcription but > even that affects the monster. But along with that I have back problems. > > > > A little background - 49 year old female with back problems for over 10 > years. I have now what they call an " end stage " herniated lumbar disk. > First MRI in '98 showed a herniated disk and treatment was suggested. > Second MRI in '03 showed progression of the herniation and degeneration. > Surgery was suggested. I was told I could either have the surgery or live > with it. Third MRI showed " Marked disk space narrowing L4-5, with loss of > hydration and subligamentous disk bulging at L4-5, posterolaterally, more > severe on the right with some root sheath compromise on the right at L4-5. > There is some bony diskogenic sclerosis of the vertebral bodies L4 and L5 > anteriorly " . > > > > My pain level has increased since this all first started and I take meds > daily just to be able to be productive. The fibromyalgia which only adds to > the problem. On a daily basis I take Tylenol 4's, morphine 30 mg ER, > anti-inflammatories , anti-depressants and muscle relaxers. > > > > I've run the gamut through doctors and pain clinics for what seems like > every imaginable type of treatment out there. Nothing. So I take my meds > and have adjusted my lifestyle to include the chronic pain. > > > > Finally decided after a number of people telling me I should have the > surgery, including my own family doc, to go ahead and look into it. The > first surgeon said I was a prime candidate for a fusion or disk replacement > but he wouldn't do it because of my fibro. He said that would make it > worse. I sort of understand that logic, but then again, I don't. > > > > The second surgeon said he would be willing to do the surgery, but said it > wouldn't help my fibro. Well, that's a given. But if it would lessen my > back and leg pain, I would be willing. He said he would do a Direct Lateral > Interbody Fusion, meaning they go in from the side, which I've never heard > of. I've been denying having surgery always saying I've never seen anyone > get better from back surgery, only worse. He also said I didn't " have " to > have it. But what are my options? Chronic pain for the rest of my life, > which it seems I'm going to have anyway because of the fibro? Or having > surgery that " might " help or might not. They are also a very anti-narcotic > clinic and I was told I would have to wean off my meds for a few weeks and > then be totally narcotic free for a solid two weeks. > > > > I would die. I would not be able to function much less work or anything > else. Again, not only because of the back problems but because of my fibro > and typing doesn't help, but it pays the bills and I have no choice but to > work. > > > > The one doctor told me if he could put me in a time capsule and launched me > ahead 10 years or so, my back would not be as bad. My father, a long time > ago, said the same thing, that they sort of " fuse " themselves. > > > > I have no idea what to think anymore. I am totally confused. I'm almost > thinking I should just not have the surgery because there is a good chance > of the surgery NOT working and even if it does, I'll have chronic pain > anyway because of my fibro. I'm afraid that the surgery would just flare my > fibro immensely. I know how bad my fibro gets just from a common cold. I > would think having major trauma such as surgery would send me to the moon. > Is it true about the " self-fusion " thing? If anyone has any opinions, > advice or suggestions on anything I've said - I would welcome them. > > > > Thank you all for listening as I'm sure many of you know what chronic pain > is. > > > > Confused - > > Teri > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 13, 2007 Debra, Why didn't the Nuero prescribe anything for you? As far as taking alot of Pills I agree with you but you just have to get use to it. Hopefully insurance companies will help a little more in the future. In Jan. we will get to find out what my husbands insurance will be. It is always changing. I think I have about 8 prescriptions. I get rid of what ever I feel like isn't working. But girl you need something for the pain, I would call the nuero and have him prescibe something. Lori H debra bunt wrote: , I too have a herniated disc in l4 and l5. Some days I think that is where the majority of my pain radiates from. When I walk my legs go numb, when I sit my legs go numb and the pain in my back is just horrible. My Neurologist ordered the MRI of my spine in Sept 07 and the radiologist said spine was fine, found nothing. While I was at my appt with Neuro doctor he found it!!! My nerves are severely pinched he stated that my nerves have about .4cm to go through and I had an EMG done and it showed that my left side is receiving but my right isn't getting them. I am just one big messed up person. My neuro suggested swimming for my back so I joined a low impact water aerobics class at our local YMCA. It has helped both with the back and the fibro. I also have some degenrative stuff happening. I don't want surgery, but if the pain isn't better by summor 08 I am going to opt for surgery. On top of everything else I also suffer from major depression and panic disorder. There are days that I don't want to leave the house and just going to the grocery store when it is busy puts me over the edge. I am trying to work through all these issues with meds but I am to the point now I take about 12 pills in the morning and about 6 at night and I have nothing for pain. I do have another appt with a different pain management doctor next wednesday but until then I am in pain everyday. I can't sit stand or walk for very long. Oh my gosh I have rambled.....sorry. Just wanted to say I feel your pain with the back issues. Debra B Gladewater, Texas Re: The monster and back problems -- delurking I have l-4 and l-5 problems and they were herniated and fused by themselves. I avoided the surgery and am glad I did. i live everyday in pain also. You learn to adjust and live life around it. I hope whatever choice you make, it all turns out for you. Melody <sunshineangel@ gmail.com> wrote: Thinking of you Teri! Teri Wallner wrote: > Good morning. > > > > I have fibro.diagnosed 3 years ago, but have dealt with it for many years. > I also don't seem to have a day that is pain free - the level just varies. > My meds take the edge off and allow me to function day to day, but it's > always present. I've kind of learned to just accept that it's a fact of > life for me and have had to make various lifestyle changes as I'm sure many > of you have too. I found a way to work from home doing transcription but > even that affects the monster. But along with that I have back problems. > > > > A little background - 49 year old female with back problems for over 10 > years. I have now what they call an " end stage " herniated lumbar disk. > First MRI in '98 showed a herniated disk and treatment was suggested. > Second MRI in '03 showed progression of the herniation and degeneration. > Surgery was suggested. I was told I could either have the surgery or live > with it. Third MRI showed " Marked disk space narrowing L4-5, with loss of > hydration and subligamentous disk bulging at L4-5, posterolaterally, more > severe on the right with some root sheath compromise on the right at L4-5. > There is some bony diskogenic sclerosis of the vertebral bodies L4 and L5 > anteriorly " . > > > > My pain level has increased since this all first started and I take meds > daily just to be able to be productive. The fibromyalgia which only adds to > the problem. On a daily basis I take Tylenol 4's, morphine 30 mg ER, > anti-inflammatories , anti-depressants and muscle relaxers. > > > > I've run the gamut through doctors and pain clinics for what seems like > every imaginable type of treatment out there. Nothing. So I take my meds > and have adjusted my lifestyle to include the chronic pain. > > > > Finally decided after a number of people telling me I should have the > surgery, including my own family doc, to go ahead and look into it. The > first surgeon said I was a prime candidate for a fusion or disk replacement > but he wouldn't do it because of my fibro. He said that would make it > worse. I sort of understand that logic, but then again, I don't. > > > > The second surgeon said he would be willing to do the surgery, but said it > wouldn't help my fibro. Well, that's a given. But if it would lessen my > back and leg pain, I would be willing. He said he would do a Direct Lateral > Interbody Fusion, meaning they go in from the side, which I've never heard > of. I've been denying having surgery always saying I've never seen anyone > get better from back surgery, only worse. He also said I didn't " have " to > have it. But what are my options? Chronic pain for the rest of my life, > which it seems I'm going to have anyway because of the fibro? Or having > surgery that " might " help or might not. They are also a very anti-narcotic > clinic and I was told I would have to wean off my meds for a few weeks and > then be totally narcotic free for a solid two weeks. > > > > I would die. I would not be able to function much less work or anything > else. Again, not only because of the back problems but because of my fibro > and typing doesn't help, but it pays the bills and I have no choice but to > work. > > > > The one doctor told me if he could put me in a time capsule and launched me > ahead 10 years or so, my back would not be as bad. My father, a long time > ago, said the same thing, that they sort of " fuse " themselves. > > > > I have no idea what to think anymore. I am totally confused. I'm almost > thinking I should just not have the surgery because there is a good chance > of the surgery NOT working and even if it does, I'll have chronic pain > anyway because of my fibro. I'm afraid that the surgery would just flare my > fibro immensely. I know how bad my fibro gets just from a common cold. I > would think having major trauma such as surgery would send me to the moon. > Is it true about the " self-fusion " thing? If anyone has any opinions, > advice or suggestions on anything I've said - I would welcome them. > > > > Thank you all for listening as I'm sure many of you know what chronic pain > is. > > > > Confused - > > Teri > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 Do you have to have a script to get one? The doc said last time that he didn't need one because they were monitoring it. After listening to you guys we are going to have a little talk this week. Where is the best place to get one. K Central Il Beth wrote: ,Congratulations to Don! It was a stroke of genius to get him up in the tractor. That had to be a great feeling for him. I can remember the first time I did something "normal" after my diagnosis. For me it was getting in the car and going to the store by myself. It reduced me to happy tears. We all need to feel like we can do something, anything that we used to be able to do. I'm so glad you did this with him. My only suggestion would be to echo the others, get an oximeter and make sure his O2 is set high enough to keep his sats up. As long as that's taken care of he can do whatever he feels up to!We're all with you!Beth Age 48 Fibrotic NSIP 06/06Change everything. Love and Forgive Re: Terry POk, here I am again. It puts it at the very bottom of all the emails. How can I get it to put it at the bottom of mine instead of the very bottom. I'm so helpless when it comes to stuff like this. Kcentral I,.Terry Pennisi wrote:Joyce,Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you!Does this crap play with your mind? I wonder. Anyway, hope you read the right one!Love and prayers,TerryTerry Pennisi 11/07 IPF Nevada You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 No, you don't need a prescription to order an oximeter. Now, in some rare cases insurance will cover one and in those cases you need a prescription. But, otherwise they are sold widely on the internet. > Joyce, > Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you! > Does this crap play with your mind? I wonder. Anyway, hope you read the right one! > Love and prayers, > Terry > > > Terry Pennisi 11/07 IPF Nevada > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > --------------------------------- > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 , You do not need a script to get one. Many doctors object to patients having them on the grounds that it may make us worry and 'obsess' more about our conditions. I've always been fortunate to have doctors who do not feel that way. It's just a tool that allows me to check and make sure my O2 level is where it should be and adjust my supplemental oxygen accordingly. The doctors check our O2 when we go to the office but let's face it, our levels can vary wildly depending on our activity. It's important to keep our levels above 90 to protect our organs from the damage that occurs from low O2 levels. I'm sure others will give you sources. www.turnermedical.com is where I got my Nonin but I know there is an FDA approved device that is only around $65 I think. Someone will pop up with the source for that one. I believe several people have purchased it and are happy with it. Hope that helps! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Terry POk, here I am again. It puts it at the very bottom of all the emails. How can I get it to put it at the bottom of mine instead of the very bottom. I'm so helpless when it comes to stuff like this. Kcentral I,.Terry Pennisi wrote:Joyce,Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you!Does this crap play with your mind? I wonder. Anyway, hope you read the right one!Love and prayers,TerryTerry Pennisi 11/07 IPF Nevada You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 Back when I had Aetna they paid for mine and like I said, I had a doctor who insisted I needed one to monitor my sats when I was exercising on my own outside of rehab. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: No, you don't need a prescription to order an oximeter. Now, in somerare cases insurance will cover one and in those cases you need aprescription. But, otherwise they are sold widely on the internet.> Joyce,> Once again I see I've sent a message to the wrong person. I just sentit to , but it was meant for you!> Does this crap play with your mind? I wonder. Anyway, hope you readthe right one!> Love and prayers,> Terry>>> Terry Pennisi 11/07 IPF Nevada>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.>>>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.>>>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> ------------ --------- --------- ---> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 , My doctor fought me about getting an oximeter. But, I was persistant. Bruce pointed out the if you have diabetes or hypertension, you have a meter. So, why not us. Mine has literally saved my life on numberous occasions. I did get a script and insurance paid 100% (and I don't have great insurance). It is a really nice one like the doc uses. Has pulse rate too. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> Joyce,> Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you!> Does this crap play with your mind? I wonder. Anyway, hope you read the right one!> Love and prayers,> Terry> > > Terry Pennisi 11/07 IPF Nevada > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost.> > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > ---------------------------------> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 Joyce Well, my pulmonologist didn't have nice things to say about those doctors fighting oximeters. If I was at 2 liters as prescribed originally, I'd be under oxygenated anytime I got off the sofa or out of bed and I would be in the 60's some of the time. Now, I'd be using unneeded oxygen much of the time I'm sitting on the sofa. When someone shows me another way to know your needs then I'll listen but I haven't heard it yet and oxygen is the one thing we know does serve a purpose. It's the only thing prescribed for PF that its need isn't subject to debate. > > Joyce, > > Once again I see I've sent a message to the wrong person. I just sent > it to , but it was meant for you! > > Does this crap play with your mind? I wonder. Anyway, hope you read > the right one! > > Love and prayers, > > Terry > > > > > > Terry Pennisi 11/07 IPF Nevada > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > > > > > > > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > > > > > > > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > --------------------------------- > > You rock. That's why Blockbuster's offering you one month of > Blockbuster Total Access, No Cost. > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 Beth They are half correct. I do obsess I guess over my oxygen levels. But it doesn't cause me to obsess more over my condition, just to be more aware. And, without enough oxygen I'd have more conditions to obsess over. I think the number opposing is decreasing but I still think very few actually advise you to get one, even those who approve when you do. I think part of it is them believing insurance won't cover it and believing its much more expensive than it is. I've found them shocked to find out you can get the same Nonin they use for $239. I'm sure they paid more. In fact, Apria was going to bill Aetna (and Aetna was going to agree) $280 per month for a rental or $1580 for a sale of the Nonin 9500 (private labelled to Respironics but identical and not even hidden as its the Respironics 950). > Joyce, > Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you! > Does this crap play with your mind? I wonder. Anyway, hope you read the right one! > Love and prayers, > Terry > > > Terry Pennisi 11/07 IPF Nevada > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 Bruce, Believe it or not, I actually bought mine myself and then submitted the script and the receipt and Aetna reimbursed me 100%. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: BethThey are half correct. I do obsess I guess over my oxygen levels. But itdoesn't cause me to obsess more over my condition, just to be moreaware. And, without enough oxygen I'd have more conditions to obsessover. I think the number opposing is decreasing but I still think veryfew actually advise you to get one, even those who approve when you do.I think part of it is them believing insurance won't cover it andbelieving its much more expensive than it is. I've found them shocked tofind out you can get the same Nonin they use for $239. I'm sure theypaid more. In fact, Apria was going to bill Aetna (and Aetna was goingto agree) $280 per month for a rental or $1580 for a sale of the Nonin9500 (private labelled to Respironics but identical and not even hiddenas its the Respironics 950).> Joyce,> Once again I see I've sent a message to the wrong person. I just sentit to , but it was meant for you!> Does this crap play with your mind? I wonder. Anyway, hope you readthe right one!> Love and prayers,> Terry>>> Terry Pennisi 11/07 IPF Nevada>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.>>>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.>>>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> You rock. That's why Blockbuster' s offering you one month ofBlockbuster Total Access, No Cost.> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2008 Beth Now you tell me.....now that I'm off Aetna. I just gave up when I was told they would pay for me to rent it for $280 per month (my copay $56 per month). I was also nearing my end with Aetna and the end of the year and knew that if I got it in January of this year through them it would all be in my deductible anyway. > > Joyce, > > Once again I see I've sent a message to the wrong person. I just sent > it to , but it was meant for you! > > Does this crap play with your mind? I wonder. Anyway, hope you read > the right one! > > Love and prayers, > > Terry > > > > > > Terry Pennisi 11/07 IPF Nevada > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > > > > > > > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > > > > > > > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > You rock. That's why Blockbuster' s offering you one month of > Blockbuster Total Access, No Cost. > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 6, 2008 Joanie just ordered me an O2 meter for my B'day. I told her that was all I wanted. She ordered the $65 one that Bruce sent the link to.   JOE/JOANIE JOE 59 IPF1/2008 -- Re: Do you have to have a script to get one? The doc said last time that he didn't need one because they were monitoring it. After listening to you guys we are going to have a little talk this week. Where is the best place to get one. K Central Il Beth <mbmurtha> wrote: ,Congratulations to Don! It was a stroke of genius to get him up in the tractor. That had to be a great feeling for him. I can remember the first time I did something "normal" after my diagnosis. For me it was getting in the car and going to the store by myself. It reduced me to happy tears. We all need to feel like we can do something, anything that we used to be able to do. I'm so glad you did this with him. My only suggestion would be to echo the others, get an oximeter and make sure his O2 is set high enough to keep his sats up. As long as that's taken care of he can do whatever he feels up to!We're all with you!Beth Age 48 Fibrotic NSIP 06/06Change everything. Love and Forgive Re: Terry POk, here I am again. It puts it at the very bottom of all the emails. How can I get it to put it at the bottom of mine instead of the very bottom. I'm so helpless when it comes to stuff like this. Kcentral I,.Terry Pennisi wrote:Joyce,Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you!Does this crap play with your mind? I wonder. Anyway, hope you read the right one!Love and prayers,TerryTerry Pennisi 11/07 IPF Nevada You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 6, 2008  J/J I bought that same one Joe and it works just fine. I had mine checked and it was off only one number. Don't drive yourself crazy checking all the time now. Hugs. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: Terry POk, here I am again. It puts it at the very bottom of all the emails. How can I get it to put it at the bottom of mine instead of the very bottom. I'm so helpless when it comes to stuff like this. Kcentral I,.Terry Pennisi wrote:Joyce,Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you!Does this crap play with your mind? I wonder. Anyway, hope you read the right one!Love and prayers,TerryTerry Pennisi 11/07 IPF Nevada You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Share this post Link to post Share on other sites