tag:blogger.com,1999:blog-12707009.comments2023-11-02T09:34:05.941-04:00The Seated ViewLene Andersenhttp://www.blogger.com/profile/11223128667829847717noreply@blogger.comBlogger2953125tag:blogger.com,1999:blog-12707009.post-91686649567272304152020-01-30T11:32:17.416-05:002020-01-30T11:32:17.416-05:00Thank you for sharing.. i have to have one of thes...Thank you for sharing.. i have to have one of these soon as im having a tumor removed from my soft pallet..ive been lookin on the net for a few days to see what its like.. (with no luck)...i feel a bit better after reading this x i just worried how my baby will react to seeing me with this<br />Anonymoushttps://www.blogger.com/profile/15365342316590761639noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-89097665125676730232019-12-02T13:50:56.333-05:002019-12-02T13:50:56.333-05:00I too very much appreciate your descriptions of th...I too very much appreciate your descriptions of the equipment and your feelings. I'm writing a short story about a man paralyzed from the neck down who is all hooked up. Your post has helped me understand what he'd be going through with the ventilator and other tubes.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-88850519481250296782019-06-22T16:34:37.681-04:002019-06-22T16:34:37.681-04:00For beautiful and adjustable finger splints, you m...For beautiful and adjustable finger splints, you may wish to check Jewel Splint:<br />https://www.etsy.com/il-en/shop/JewelSplint/items<br />https://www.jewelsplint.com/<br />simsimhttps://www.blogger.com/profile/12497528326118325497noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-65156329716597393172019-06-08T16:43:33.888-04:002019-06-08T16:43:33.888-04:00I was diagnosed with AS 5 years ago when I was 36....I was diagnosed with AS 5 years ago when I was 36. I have been 5'6" between 130-135 most of my adult life. I used to run long distance but stopped once my pain go too bad and switched to elliptical and walking. I still strength train as well. I tried Humira for 6 months with no real pain improvement, but it did cause my hair to thin and fall out. My Rheumy switched me to Cosentyx 4 months ago and have gained 20lbs, mostly around my mid-section and boobs! It is totally noticeable. I have a vegan diet and watch carbs. It HAS to be the medication. I'm stopping it to see. Best of luck to all!Katenoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-54162960703905510772019-05-13T23:25:25.596-04:002019-05-13T23:25:25.596-04:00Allie - and others: I'd be happy to connect wi...Allie - and others: I'd be happy to connect with you and share more information or just chat, but it's hard to do on this blog. I've moved to www.theseatedview.com. You can reahc me at lene AT yourlifewithra DOT comLene Andersenhttp://www.theseatedview.comnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-6059061479331206802019-05-13T19:26:47.564-04:002019-05-13T19:26:47.564-04:00Hi! My boyfriend currently has a tracheostomy aft...Hi! My boyfriend currently has a tracheostomy after a horrible car accident about 6 weeks ago when he broke a bunch of ribs and had a collapsed lung (among other injuries). He was intubated for about 3 weeks before the trach was inserted. He is finally out of CCU/ICU and has been for a couple of weeks but they are having one heck of a time weaning him off of the trach. Getting over this hurdle will be HUGE in his recovery as he has other injuries that need healing/physical therapy as well. I feel like he is receiving good care at the long term acute care facility he is in now, but it's hard to get info that I can understand! He is fully conscious and aware now, but gets very anxious when he has too many secretions because it makes him feel like he can't breathe even though his oxygen levels are fine (with the ventilator). He panics, and they give him Ativan for anxiety and that really does help. They say he has LOTS of lung gunk (as you say) and I have been scouring the internet for ways to help him. From what you wrote it looks like he should cough as much as possible? I would so love any helpful tips from you that I could pass along. I'm looking for things HE can do to help himself get off the ventilator. I could give you my email if that would be best. So much great info in your blog! THANK YOU!Alliehttps://www.blogger.com/profile/01183920569673020776noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-7359074394387510912019-05-11T00:01:45.937-04:002019-05-11T00:01:45.937-04:00Thank you sooo much for your post! I just started ...Thank you sooo much for your post! I just started Humira and am having all kinds of "interesting" challenges. I took my first shot and thought whoa..need to take the next one around bedtime.I did feel a great deal better though.Everyone keeps saying it takes time to really work.My thoughts, if it gets better than this, I will be superwoman again. But..the gas and bladder issues that started creeping up a few days after have almost made me think twice about the next fuzzy headed, less pain excitement. I have been looking on websites for days now trying to see if these are normal side effects or if my body doesn't want to give up the fight of hating me. The sinus pressure in my ear is interesting when I bend over too. I really like being able to see the joints in my hands again, prednisone is helping too. Anyway, again I say THANK YOU for your post. I feel much better about taking my second round in a few days. Burpy and flame hazard learner. 😊Learning my new bodyhttps://www.blogger.com/profile/15800536596588629566noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-75204784702993298152019-05-05T10:58:28.869-04:002019-05-05T10:58:28.869-04:00Wow! I was diagnosed with RA back in 2009 and bega...Wow! I was diagnosed with RA back in 2009 and began methotrexate at that time. I went from a size 6 to a 12 in about 18 months without increasing food or decreasing exercise. Figured it was menopause. I was in really good control with very few flares or pain episodes. When I lost my husband about 5 years ago the stress in my life caused some severe flares and my doctor upped my dose from 6 tablets to 8. And the weight packed on again moving me from a size 12 to a size 18. I wasn't getting any relief from the pain until I began seeing an acupuncturist. She got me to go gluten/non-cultured dairy free and I saw significant changes in pain levels but not in weight. <br /><br />Then late in 2018 I begin experiencing horrible diarrhea that occurred only on the day after I would take my methotrexate. My new rheumatologist cut me down to 4 tablets and then finally to injectible methotrexate at 10 ml. It took care of the diarrhea and I lost 10 pounds in a month. Due to increased pain I was increased up to 15 ml and gained back 3 lbs in 2 weeks. Pain is still an issue.<br /><br />I had planned on talking to my rheumatologist the end of this month about trying a biologic but after reading all of these comments that isn't going to happen. <br /><br />I currently take Boswellia, Tumeric, Bromelain, 5000 units of V-D3 3 times a week. I may investigate an elimination diet to see if I need to tweak things.<br /><br />I thank you for the information and plan to follow this.Warrior Cathttps://www.blogger.com/profile/17138109158461341510noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-9879160149364797202019-04-11T14:19:57.472-04:002019-04-11T14:19:57.472-04:00I’m 40 years old, have been on Humira injections f...I’m 40 years old, have been on Humira injections for 6+ months and I have also gained weight. My eating habits have not changed any, but I’m still gaining. <br />I have gained 25 pounds. <br />Has anyone came off the Humira and lost the weight pretty easily or does it stay? <br />This is really depressing me. I’ve always watched what I ate so I could look a certain way and also to be healthy.<br />I’m considering coming off the Humira if the weight gain continues.<br />Has anyone came off the Humira and instantly lost weight? Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-271523705038357572019-04-11T14:18:06.099-04:002019-04-11T14:18:06.099-04:00I’m 40 years old, have been on Humira injections f...I’m 40 years old, have been on Humira injections for 6+ months and I have also gained weight. My eating habits have not changed any, but I’m still gaining. <br />I have gained 25 pounds. <br />Has anyone came off the Humira and lost the weight pretty easily or does it stay? <br />This is really depressing me. I’ve always watched what I ate so I could look a certain way and also to be healthy.<br />I’m considering coming off the Humira if the weight gain continues.<br />Has anyone came off the Humira and instantly lost weight? Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-4290617448006058442019-03-28T20:47:13.604-04:002019-03-28T20:47:13.604-04:00I was on Remicaide for 8 yrs I gained 8 lbs a year...I was on Remicaide for 8 yrs I gained 8 lbs a year!! I'm hoping now that I'm on Simponi Aria I won't gain at all Bec it took me 2 yes to loose the Remicaide WT<br />Anonymoushttps://www.blogger.com/profile/17332044345551024160noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-14622450995198795462019-03-28T18:15:02.157-04:002019-03-28T18:15:02.157-04:00Thank you for this info regarding preventing sinus...Thank you for this info regarding preventing sinus problems, especially when taking biologic meds... here's a list of prevalent current thinking as of 3/19 -<br /><br />1) The pineapple ingredient, Bromelain, may be better as a capsule rather than drinking the juice - 500 - 1000mg daily<br />2) Daily sinus saline rinse/flush such as Nettipot<br />3) Frequent hand washing<br />4) Nasal saline spray as needed to keep the nose moist<br />5) Certainly lots of hydration is always good<br />6) Some use Mucinex (guaifenesin)on a regular basis to keep secretions thinner<br />7) For a badly deviated septum or chronic non-draining sinus consider corrective surgery<br /><br />As a patient myself on a biologic (Entivio) with past sinus problems (maybe or maybe not related to the medication), to me, these are the ideas that seem most reasonable to consider - best wishes to all of you.<br />Todnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-48768943014425243082019-03-02T10:30:40.166-05:002019-03-02T10:30:40.166-05:00Was on Remicaid for 12 years for PsA and ballooned...Was on Remicaid for 12 years for PsA and ballooned up quickly. Was unable to lose weight even on strict diet plans eating 500-600 calories per day. Went off all meds for 2 years and lost 20 lbs immediately eating 1500-2000 calories per day, but symptoms of PsA returned quickly. Tried Otezla. Lost 30 lbs in 3 months, and while the pain was dulled, my mental state was not right - made me feel sad all the time! Dr suggested Enbrel and gained 40 lbs in 4 months all in the belly. Dr suggesting Simponi ARIA which I start this month. Do not want to take any more drugs-want to be med & pain free. Looking for healthy solutions! Been up & down the scale for past 15 years and want off...<br />Trying moringa leaves too see if any relief - will post again if works. Pufferfish17noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-63886428081246776592019-02-21T10:11:55.886-05:002019-02-21T10:11:55.886-05:00I have been on Orencia infusions for over a year. ...I have been on Orencia infusions for over a year. I also am post menapausal. Weighed 125-130. My weight was stable until they raised my medicine from 750mg to 1000mg. In 2 months I gained 30 pounds. He is checking my cortisol levels to see if they are too high. If you all research cortisol you might be surprised where the weight gain is actually coming from. It’s been a month now since they reduced it back down to 750 and I am slowly taking the weight back off. Once the results come in he will have to change up my medicine because it’s not working for my RA. Good luck allAnonymoushttps://www.blogger.com/profile/10445762811034802761noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-71133272323040999282019-02-20T22:43:56.548-05:002019-02-20T22:43:56.548-05:00I am so happy I found your post! I had a tracheoto...I am so happy I found your post! I had a tracheotomy when I was 4 and now I am 51. I have always become upset when I became conscious of my scar or some kind of strangulation or slit throat scene was seen on TV or in movies. All my life I am very quick to develop a cough and at one point I even went to an ENT to make sure that my breathing passages were clear. Lately I have been woken up in the middle of the night and have to step outside because I feel like I can't breathe and recently I was on a plane and panicked because I couldn't breathe same thing in a 14th floor hotel room because the window did not open or a friend's basement. I can't find anything on the internet so I really appreciate your commentary on this. I know this is PTSD even though it is decades later. This gives me hope I am going to go get help tomorrow.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-41296996724265619522019-02-20T22:37:54.807-05:002019-02-20T22:37:54.807-05:00I am shocked that Andy sprayed his hornet nest wit...I am shocked that Andy sprayed his hornet nest with super toxic/poison chemicals in his green house. Using a shot gun to knock the nest down and fire to burn the nest is the best way to get rid of a hornet nest, especially in your green house. Anonymoushttps://www.blogger.com/profile/09090875239180276206noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-70977609894361322392019-02-19T09:53:45.960-05:002019-02-19T09:53:45.960-05:00I ended up in ER from Anaphylaxis shock, which we ...I ended up in ER from Anaphylaxis shock, which we still haven't got confirmation from what. (eating scrambled eggs & rye toast. Yes I eat eggs often, rye occasionally w/o an issue) As it turns out it was getting more difficult to breath (in ER) and was intubated. I have no memory of this other than saying I can't breathe and panicking. They discovered I had bilateral pneumonia, which prior to all of this I thought I had a chest cold. No big deal, right? I had no other symptoms to say otherwise. Day's later I was airlifted to another hospital better equipped to care for me. Still on ventilator, IV meds, etc l was finally able to be weaned off as I improved. Through all of what I remember and what I've been told I am petrified to ever go through such a traumatic ordeal again!! After all the rounds of antibiotics and prednisone I'm still dealing with trying to cough up the nasty phlegm and having a hard time because of the inflammation still present in my throat/vocal cords, etc. At times it gets stuck and it makes it more difficult to breath, and I panic. I've been out of the hospital just over a month and trying to cope living like this has taken a toll on me! I can't get up and walk around w/o gasping for air. How long am I supposed to go on like this? What makes matter's worse we still have no answer's to what caused the Anaphylaxis in the first place. Waiting on blood work is grueling and scary as hell! I now have an epi-pen, which has helped with anxiety a bit, but I'm still terrified it could happen again...<br />PTSD? I don't know, is it? I have no life right now other than going from bed to couch, couch to bed w/o and other activities is getting the best of me!! I really don't know where to turn! I'm so frustratedAnonymoushttps://www.blogger.com/profile/16989606673855065387noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-19095839946685181522019-02-18T07:59:14.214-05:002019-02-18T07:59:14.214-05:00Great tips Lene. I’m going to start drinking more ...Great tips Lene. I’m going to start drinking more water and get pineapple juice. Actually this is a remedy I used when my kids were young but forgot about! Thanks.Cathyhttps://cathy-kramer.comnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-43954613076221246532019-02-10T16:59:33.855-05:002019-02-10T16:59:33.855-05:00Hi Angie, for about 4yrs I've been on Humira &...Hi Angie, for about 4yrs I've been on Humira & Methotrexate for UC and RA. I am 67 and have gained approx 90lbs since meds began. Previously I was on steroids and Remicade until reactions started. My DRs all deny the weight gain is from the meds. Though compassionate, they deal with the symptoms and are lost when I enquire about the cause/effect aspect and gut biodome. Frustrating. I too have a lean healthy diet and am active. I would like to be able to manage my conditions thru diet and supplements, but there aren't qualified practitioners to help me do that. My tiny frame plus substantial weight gain has contributed to depression. I continue to investigate other methods. I am glad I found this blog and will visit regularly.JMAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-87134387510224811132019-02-09T09:25:57.594-05:002019-02-09T09:25:57.594-05:00Lene. Just wanted to let you know that my mom is b...Lene. Just wanted to let you know that my mom is back at home after a month in the ICU. We are very happy that she is back home and I wanted to thank you for offering the advice above. It helped us cope as we sailed through some rough seas and better prepared for the journey ahead. We did maintain a record of her time in the ICU. <br /><br />Thank you and our family sends you love and warmth,<br /><br />VarunVivihttps://www.blogger.com/profile/18093388588340153438noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-25873216331474143432019-02-08T06:12:01.276-05:002019-02-08T06:12:01.276-05:00Extremely InformativeExtremely InformativeMammography Examhttp://www.primadiagnostics.com/mammographynoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-28224825123748202112019-02-08T04:11:22.695-05:002019-02-08T04:11:22.695-05:00The couple with the dogs — the demeanor the dogs ...The couple with the dogs — the demeanor the dogs have around the man and the way he’s spoken to his wife. It’s clear to me he doesn’t just verbally abusive others/the dogs. To constantly say I’m worried for my dogs over and over cry’s bull shit to me — clearly an act. I pray those dogs don’t die in pain. Invest your money in a snow month, living right by the river and mostly straight travels, doesn’t make sense to me to do that torture to 25 dogs. Anonymoushttps://www.blogger.com/profile/17819117006484311630noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-59898036256887584492019-02-05T21:29:59.565-05:002019-02-05T21:29:59.565-05:00Sue is totally playing up the drama. We all know t...Sue is totally playing up the drama. We all know there is a TV crew filming, how can she act like she is ever in danger?!?!?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-12707009.post-20325162139500178212019-02-01T10:12:25.185-05:002019-02-01T10:12:25.185-05:00The ventilator and all the crap that comes with it...The ventilator and all the crap that comes with it was awful but it beats the alternative, being dead and my kids not having a parent.<br />I have to thank Spartenburg Medical Center ICU for saving my life!<br />Lisa<br />Anonymoushttps://www.blogger.com/profile/14037684879388072638noreply@blogger.comtag:blogger.com,1999:blog-12707009.post-4895361550306574142019-01-31T23:22:29.332-05:002019-01-31T23:22:29.332-05:00Chelsea Roy, I believe 100 % with what you tried. ...Chelsea Roy, I believe 100 % with what you tried. I tried natural homeopathy before I lost my colon & rectum but didn’t have the right ND . <br />Now I do but I found him after I started stelara for UC . I’ve gained 15 lbs in 1 year. I’m seriously thinking of lowering dose to then remove it completely & try to stay inflammation free on my own but I’m scared. I also have raised blood pressure now and headaches from stelara but for the most part I love that I’m pain free and can do everything now. I would love to chat with you because we think alike. Let me know if you have time. <br />Kim <br /><br />Kim Dhttps://www.blogger.com/profile/09052846793367940178noreply@blogger.com