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Post by Deleted on Mar 21, 2018 22:03:57 GMT
I meant to address this yesterday but I was too wired. I WISHED that Medicare/Humana could have tried other options to help my chronic pain like physical therapy. Funny thing is that whenever I got my hair cut, the massage they give you when they wash it temporarily put me in the ZERO-pain level! I'd say, "I wish I could come to you and get it washed every day!" The pain-free feeling lasted for about an hour. It was a relief. If that helped, maybe other things like physical therapy would help!!! I know, for sure, that botox worked for me! I had it only once and then I found out that Medicare does not see it as a real medical option!! They wanted to put it through part B of Medicare, and I had to pay over $200. Forget it! I'm on disability! It's such a shame that it worked! Instead, I go to my pain dr, pay $40 each time (I only go every 3 months now since they trust me!!), and then about $3.95 for each Rx. But even that amount (+ the gas to get there) adds up when you're disabled. Ughhhhhhhh! And you CAN'T just get off of those meds! I got off of the rescue opioids, and I'm only on 1 daily opioid left. I'm hoping to wean off of that when I'm completely healed from the last surgery........ For now I'm getting rebound pain and breakthrough pain and I just rely on that Rx (others are more dangerous for me!). I hope that your friend does find a middleground. I'm ready to finish all of this and get on a healthier path--limited stress, try yoga, eat cleaner, etc........... We can all always do better, right? I'm 57 and still trying to perfect things! Good luck to you my dear!! I hear you!! Doctors want to help people with their pain, and unfortunately, it doesn't get take long to get "hooked" on the pain pills. My sister is on several different meds (pain pills and anti-depressants) that the doctor is trying hard to get her off of!! She has several health probems, and to treat one, takes two or three different medications. She went off cold turkey and almost died, so that isn't the answer either. ((HUGS)) eta. I forgot to say that she went to a pain clinic, and THEY put her on yet ANOTHER pill!! When her primary care doctor found out HE was livid and took her off that!! So she was trying hard to cut down by going to the clinic where she THOUGHT they would suggest massage, yoga, or other things!! She feels totally defeated. OMG, I'm so sorry!!! This is when it's URGENT to speak up for yourself. It's bad timing because you feel crappy + your dependence on drugs makes you feel even more foggy, but in those clear moments, you read up on what's best for your health--be proactive!!! Don't depend on a clinic or dr to do what's best for you. That's why I want to come off of ALL pain meds when I'm ready. I'm already off of most of them, but still keep them on hand until I'm 100% finished with surgeries..... I'll do it myself and tell my pain dr when I'm off of them..... He wants me off of everything even if I'm still in horrid pain. I wasn't sure if he understood that back then there was no "getting better" for me. I'd feel that horrible pain daily, but he thought I could just wean off of pain meds as though that was the issue. Ha!!! So, SLOWLY cutting back would be great for her and it should be celebrated. It's not easy!! I have an extra bottle, and for every pill that I'm able to go without and put in the "extra" bottle, I'm thrilled. I tell DH and he's happy for me....... I hope that your sister could do something similar. I wish I drank coffee or soda or helped wean off with some help, but I only drink water (no smoking), so it's all cold-turkey. I'm going SLOWLY. I wish her the best!!! |
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Post by Deleted on Mar 21, 2018 22:07:55 GMT
That sucks! being all psyched up and having all your ducks in a row for surgery and then the PCP's office messes up. It takes a lot of planning and arranging of a person's life to have surgery and you would think they would get it right. So sorry this happened to you. About those pain meds - they are having trouble in some hospitals getting them for patients who really need them. Daughter works on a trauma ward and there are times when they don't have the pain meds theirs patients need and have to deal with the results. This is so wrong it makes my heart hurt. Those poor patients and the nurses too who have to deal with it all. I imagine many patients think their nurses are just with holding the meds for lazy reasons and are angry with them. This is HORRIBLE!!!!!!! I know enough to have DH bring my own meds with us, because all they'll do at a hospital is give you an Rx to fill. Unless you're heading into surgery, you're not going to get pain meds! I had a 6 hour MAJOR surgery where they chipped away at my eye socket (bone) and gave me 1 pill and sent me home! WOWWWWWW! I cried and vomited in the car on the way home........ It's tough! Thank you for your comments and for the confirmation that this is happening all over the place! P.S.: TO EVERYONE who commented on my pic: THANK YOU!!! It takes a lot for me to post pics of myself, so I appreciate it!! You're all too kind! |
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Post by Deleted on Mar 21, 2018 22:15:18 GMT
What a huge bummer. I can imagine what it's like, because my husband has had PET scans cancelled three times because the facility didn't have the right paperwork from the insurance company. To have a major surgery cancelled because of stupid screw-ups is so frustrating. moodyblue I'm so sorry!!! When you put time aside and juggle everything for that 1 medical event, and then it's cancelled, it could be a HUGE deal in your household (not only an emotional letdown). I'm sorry for him. Yes, this is a big pain in the butt for me...... I'm used to setbacks, and I'm taking the time to have the courage to be clearheaded enough to fight for myself again. I'll do it by tomorrow...... Hope your DH gets his PET scans. I'd be calling the insurance company and his PCP to see whose fault it was, and I'd be trying to straighten it out. They don't count on us doing that! I take notes, names, etc...... until I get them to make it right. I hope he gets to the bottom of it asap, without further aggravation!! (I should write a book or create some kind of company to help people navigate thru this crap........) |
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Post by Deleted on Mar 21, 2018 22:23:01 GMT
This is huge. The anticipation, the expectation, the scheduling around your husband’s care. And then the PCP drops the ball. I’m so sorry and I would be angry too. I think your idea of forming a business as liaison for pain management is something worth considering. jenjie Thank you so much. This, coming from you, means so much to me. You're all too familiar with medical situations, etc...... It seems sometimes that there's a big part missing from being a patient to going to pain mgmt. and having them not know the full situation. There's a HUGE part missing where the insurance companies and Medicare take FULL advantage of patients who are most times in pain, sick or uneducated enough not to follow through and then get taken advantage of. I'm sure that they all think, "oh no! Here she comes--she won't stop until this is resolved her way" and that's damn straight!!!!!!! There is a need for a liaison to bridge the 2 pieces of medical situations together, to help the PATIENT in need. I would have appreciated that!!! |
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Post by Deleted on Mar 21, 2018 22:37:30 GMT
Good luck to you my dear!! I hear you!! Doctors want to help people with their pain, and unfortunately, it doesn't get take long to get "hooked" on the pain pills. My sister is on several different meds (pain pills and anti-depressants) that the doctor is trying hard to get her off of!! She has several health probems, and to treat one, takes two or three different medications. She went off cold turkey and almost died, so that isn't the answer either. ((HUGS)) eta. I forgot to say that she went to a pain clinic, and THEY put her on yet ANOTHER pill!! When her primary care doctor found out HE was livid and took her off that!! So she was trying hard to cut down by going to the clinic where she THOUGHT they would suggest massage, yoga, or other things!! She feels totally defeated. OMG, I'm so sorry!!! This is when it's URGENT to speak up for yourself. It's bad timing because you feel crappy + your dependence on drugs makes you feel even more foggy, but in those clear moments, you read up on what's best for your health--be proactive!!! Don't depend on a clinic or dr to do what's best for you. That's why I want to come off of ALL pain meds when I'm ready. I'm already off of most of them, but still keep them on hand until I'm 100% finished with surgeries..... I'll do it myself and tell my pain dr when I'm off of them..... He wants me off of everything even if I'm still in horrid pain. I wasn't sure if he understood that back then there was no "getting better" for me. I'd feel that horrible pain daily, but he thought I could just wean off of pain meds as though that was the issue. Ha!!! So, SLOWLY cutting back would be great for her and it should be celebrated. It's not easy!! I have an extra bottle, and for every pill that I'm able to go without and put in the "extra" bottle, I'm thrilled. I tell DH and he's happy for me....... I hope that your sister could do something similar. I wish I drank coffee or soda or helped wean off with some help, but I only drink water (no smoking), so it's all cold-turkey. I'm going SLOWLY. I wish her the best!!! She said "Just knowing she has some in reserve" makes her feel better! So yes, she's now cut down about 1/3 from where she was. I couldn't understand why the pain clinic (that she went to for help to get off pills) put her on yet another one! I was torked! And she NOW knows she has to stand up for herself, and tell them what she needs. She's been on pills for 30 years, so this isn't an all of a sudden thing. As for my friend, I sure hope he can get off of some of his stuff. Like I said, I was really pleased with how he looked the last time we saw him. He looked like he cared about himself again. The time before, he looked like he could have cared less. He was unshaven, dirty, had dirty clothes on. (totally out of character for him!) This time, he was clean, and he even had a spark in his eye. |
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azredhead
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Post by azredhead on Mar 21, 2018 22:47:24 GMT
That sucks! being all psyched up and having all your ducks in a row for surgery and then the PCP's office messes up. It takes a lot of planning and arranging of a person's life to have surgery and you would think they would get it right. So sorry this happened to you. About those pain meds - they are having trouble in some hospitals getting them for patients who really need them. Daughter works on a trauma ward and there are times when they don't have the pain meds theirs patients need and have to deal with the results. This is so wrong it makes my heart hurt. Those poor patients and the nurses too who have to deal with it all. I imagine many patients think their nurses are just with holding the meds for lazy reasons and are angry with them. This is HORRIBLE!!!!!!! I know enough to have DH bring my own meds with us, because all they'll do at a hospital is give you an Rx to fill. Unless you're heading into surgery, you're not going to get pain meds! I had a 6 hour MAJOR surgery where they chipped away at my eye socket (bone) and gave me 1 pill and sent me home! WOWWWWWW! I cried and vomited in the car on the way home........ It's tough! Thank you for your comments and for the confirmation that this is happening all over the place! P.S.: TO EVERYONE who commented on my pic: THANK YOU!!! It takes a lot for me to post pics of myself, so I appreciate it!! You're all too kind! You look fabulous! I'm sure it probably doesn't feel like that! Yes to EVERYTHING said this..and you've got more than enough to load than most. I'm heart patient and trying to get pacer changed the battery life won't go much longer. I was in the ER on Sun. I wasl lightheaded pain in my shoulder.. etc.. It's not urgent enough to do it now but urgent enough not to put off any longer. I've had enough surgeries scheduled, bumped or changed. It's so frustrating because the patient aslo has to change your life around. I know they try hard not to change surgeries, procedures etc. but sometimes ya wanna just scream! I'm glad you got pain meds, they sent me home with some as well for a couple issues- they can only give you so much. Then they either change the amount or the dose so it doesn't look like you're a drug addict. DH has chronic back pain and this has been his biggest opsticle getting treatment. and he has good insurance. It's crazy! I've had numerous serious surgeries so ya learn how it works the good and the bad. Anyway I totally feel for you!! I hope you get some relief and much needed down time.. You do have to be firm and tell them..what's what sometimes.. I wish you a smooth going with EVERYTHING! HUGS!! |
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Post by Deleted on Mar 21, 2018 22:53:08 GMT
Donnie : That's great! 1/3 less? Cool. The pain clinic I go to seems to be INSISTANT on my getting off of the Rx's, which made NO sense when there was no end in sight for my pain level. Stupid. They didn't know how to approach my particular situation. That's 1 reason why you have to be proactive, but yet find the best doctors...... I learned to ASK them to read each script to me before I leave, so I'm sure it's the right one being sent over. Sometimes we get distracted with small talk and things get messed up! I learned to tell them that I'm in pain and tell them what I need... And, yes, putting pills aside and weaning off slowly on your own is the way to go. They don't need to know......
I'm glad that your friend looked better. Geez, I was never that badly off even when I was in the worst of pain. I never took too much of my meds and never looked ratty (at least I hope I never did!!). People know when you're doing well and you're healthier--it shows!!
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Post by jenjie on Mar 21, 2018 23:13:34 GMT
This is huge. The anticipation, the expectation, the scheduling around your husband’s care. And then the PCP drops the ball. I’m so sorry and I would be angry too. I think your idea of forming a business as liaison for pain management is something worth considering. jenjie Thank you so much. This, coming from you, means so much to me. You're all too familiar with medical situations, etc...... It seems sometimes that there's a big part missing from being a patient to going to pain mgmt. and having them not know the full situation. There's a HUGE part missing where the insurance companies and Medicare take FULL advantage of patients who are most times in pain, sick or uneducated enough not to follow through and then get taken advantage of. I'm sure that they all think, "oh no! Here she comes--she won't stop until this is resolved her way" and that's damn straight!!!!!!! There is a need for a liaison to bridge the 2 pieces of medical situations together, to help the PATIENT in need. I would have appreciated that!!! Thankfully we didn’t have any of those types of issues. But I can see people in your shoes being willing to pay to have you advocate for them. When you’re in the kind of pain you suffer with, the last thing you want to have to deal with is red tape. It’s confusing enough as it is. Pain magnifies everything else. The confusion, aggravation, frustration, etc. are tenfold. Making a jillion phone calls, waiting on terminal hold, trying to remember this gets that code and that one gets this. In my uneducated opinion, I believe this would be a valuable service. For all parties. Not for nothing, but on the Insurance and medical end, too. It’s got to be easier for them to deal with a liaison - ok bergdorf, here’s what we need from patient A - rather than listen to each patient’s whole story and know that half the time they will need to repeat info for the patient because it’s so personal. I believe you have enough of an understanding of the patient POV AND what the medical people need that you are the right person for such a job. |
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Post by Deleted on Mar 21, 2018 23:17:15 GMT
This is HORRIBLE!!!!!!! I know enough to have DH bring my own meds with us, because all they'll do at a hospital is give you an Rx to fill. Unless you're heading into surgery, you're not going to get pain meds! I had a 6 hour MAJOR surgery where they chipped away at my eye socket (bone) and gave me 1 pill and sent me home! WOWWWWWW! I cried and vomited in the car on the way home........ It's tough! Thank you for your comments and for the confirmation that this is happening all over the place! P.S.: TO EVERYONE who commented on my pic: THANK YOU!!! It takes a lot for me to post pics of myself, so I appreciate it!! You're all too kind! You look fabulous! I'm sure it probably doesn't feel like that! Yes to EVERYTHING said this..and you've got more than enough to load than most. I'm heart patient and trying to get pacer changed the battery life won't go much longer. I was in the ER on Sun. I wasl lightheaded pain in my shoulder.. etc.. It's not urgent enough to do it now but urgent enough not to put off any longer. I've had enough surgeries scheduled, bumped or changed. It's so frustrating because the patient aslo has to change your life around. I know they try hard not to change surgeries, procedures etc. but sometimes ya wanna just scream! I'm glad you got pain meds, they sent me home with some as well for a couple issues- they can only give you so much. Then they either change the amount or the dose so it doesn't look like you're a drug addict. DH has chronic back pain and this has been his biggest opsticle getting treatment. and he has good insurance. It's crazy! I've had numerous serious surgeries so ya learn how it works the good and the bad. Anyway I totally feel for you!! I hope you get some relief and much needed down time.. You do have to be firm and tell them..what's what sometimes.. I wish you a smooth going with EVERYTHING! HUGS!! OMG, your story makes me SO mad!!!!!!!!!! That IS life-threatening! I swear, they count on us giving up and not caring! We can only be proactive when we feel strong enough to do so. That's pretty recent. I've had surgeries beginning in 1974 and it wasn't like it is now. I lost count with my surgeries but I think I'm at 36 now!! Now you need a file, paper, pens and recordings of everyone you spoke to and every piece of paper because they all lie and change things on you. It stinks!!!!!! It's tough for me because DH is a cancer patient + he's my driver (I can't drive into Tampa), and we both drive 2 others here (4 people/1 car). Hard to schedule things, but don't cancel on me!!!!!!! Sorry about your DH's back situation. My ex had chronic back pain too. He had a herniated disc. Stress usually made it MUCH worse. He stayed reasonably thin (helps the pain factor) and he never even took an aspirin. I see SO many people in the pain clinic with bad back pain. I know how disabling it could be. As far as he meds go, I learned that they go by your weight and a few other items. I've gotten actual brands passed thru when generics didn't do anything for me. And I get the max dosage and keep what I don't use. I hate playing around with insurance and pharmacies, but they keep changing the rules on us! (Thank you re: my pic. I feel fabulous but I'd feel much better without the patch!!) |
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Post by Deleted on Mar 21, 2018 23:25:43 GMT
jenjie Thank you so much. This, coming from you, means so much to me. You're all too familiar with medical situations, etc...... It seems sometimes that there's a big part missing from being a patient to going to pain mgmt. and having them not know the full situation. There's a HUGE part missing where the insurance companies and Medicare take FULL advantage of patients who are most times in pain, sick or uneducated enough not to follow through and then get taken advantage of. I'm sure that they all think, "oh no! Here she comes--she won't stop until this is resolved her way" and that's damn straight!!!!!!! There is a need for a liaison to bridge the 2 pieces of medical situations together, to help the PATIENT in need. I would have appreciated that!!! Thankfully we didn’t have any of those types of issues. But I can see people in your shoes being willing to pay to have you advocate for them. When you’re in the kind of pain you suffer with, the last thing you want to have to deal with is red tape. It’s confusing enough as it is. Pain magnifies everything else. The confusion, aggravation, frustration, etc. are tenfold. Making a jillion phone calls, waiting on terminal hold, trying to remember this gets that code and that one gets this. In my uneducated opinion, I believe this would be a valuable service. For all parties. Not for nothing, but on the Insurance and medical end, too. It’s got to be easier for them to deal with a liaison - ok bergdorf, here’s what we need from patient A - rather than listen to each patient’s whole story and know that half the time they will need to repeat info for the patient because it’s so personal. I believe you have enough of an understanding of the patient POV AND what the medical people need that you are the right person for such a job. WOWWW! Thank you!! Strangely, you are the 3rd person in the past week who has said something this encouraging about me starting my own particular company b/c of experience........ Interesting!!! After reading what you said, I think you're on to something!! I immediately think of it from my end--that no one should have to go through that red tape, but you're right--insurance companies MIGHT want to speak with someone who could be organized and sort it all out and make it go more smoothly for them too! Spot on!!! The other day alone was enough for my PCP's office to assume that they were speaking to my surgeon and not little old me!!! The only downfall in this scenario that I could see is HIPPA laws, and that patients wouldn't want to hand out their personal information to a 3rd party to help them navigate thru red tape. Also, the other end would need to know that I had approval to do same. Still, this is a GREAT idea that I'll research more when I feel okay. God knows I've been doing this for me and for DH for 10 years now! Thank you for your confidence in me and your supportive ideas. I'm impressed!!!  |
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Post by alexa11 on Mar 21, 2018 23:30:52 GMT
Now that would really piss me off. I'm sorry that you had to deal with this incompetence.
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azredhead
Drama Llama
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Post by azredhead on Mar 21, 2018 23:32:47 GMT
@bergdorfblonde - my aunt keeps asking me why are they waiting lol! I said it's what they do! I had the option to stay and be admitted. But here in the winter with the winter visitors it's a NIGHTMARE! I've done that before and each time I say never again! lol but I don't have much choice sometimes. I go back to 73 I hear yar I was born with it, so I get kinda used to it so to speak. I got the Pacer at 35. I'm now 45 in Aug. We didn't expect that but ya never know with body parts. We won't talk about my stomach mess but that's getting better. But yes it gets super frustrating. You learn a lot as you go. My mom was my biggest advocate and now that she's gone I really have to step it up. Even as an adult it's difficult. When I made my appt I have to make sure they have a rep there for the Pacer since they don't even make my type anymore. Last time one never showed and I had to reschedule after sitting there for two hours.
Usually my cardio works are a full day of tests. It's always been that way so I get used to that part. But now I make them check. With the recent events Ii'm hoping it will speed things along anyway - I just wanted you to know how great ful I am for this board a lot and that we can learn stuff and support. It is always nice to hear or know you're not alone in that stuff.
Anyway i didn't mean to be so long winded lol! And ihope your DH is doing ok!
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Post by jenjie on Mar 21, 2018 23:51:26 GMT
“The other day alone was enough for my PCP's office to assume that they were speaking to my surgeon and not little old me!!!”
That’s what made me think of it. You’ll definitely have to see where that would fit in with HIPAA. If you do decide to proceed, I don’t think it will happen overnight. It’s groundbreaking. Which is both awesome and intimidating at the same time. But groundbreaking means nobody else has laid the groundwork for you. So you’re going to have to hustle. And pray. And wait. But you might very well open up a whole new avenue in patient care.
Wow! How awesome would that be!
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Post by Deleted on Mar 21, 2018 23:57:25 GMT
Donnie : That's great! 1/3 less? Cool. The pain clinic I go to seems to be INSISTANT on my getting off of the Rx's, which made NO sense when there was no end in sight for my pain level. Stupid. They didn't know how to approach my particular situation. That's 1 reason why you have to be proactive, but yet find the best doctors...... I learned to ASK them to read each script to me before I leave, so I'm sure it's the right one being sent over. Sometimes we get distracted with small talk and things get messed up! I learned to tell them that I'm in pain and tell them what I need... And, yes, putting pills aside and weaning off slowly on your own is the way to go. They don't need to know...... I'm glad that your friend looked better. Geez, I was never that badly off even when I was in the worst of pain. I never took too much of my meds and never looked ratty (at least I hope I never did!!). People know when you're doing well and you're healthier--it shows!!I think my friend's problems are more depression related--divorce, having to start over, old, pain, (he's in his 80's) He and his wife got divorced a couple of years ago--and his daughter died this past summer too--so he's not had an easy go of it. |
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Post by katlaw on Mar 22, 2018 0:00:51 GMT
Sorry. What crappy service. Guess you are going to have to stand there and watch over them next time.
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Post by Deleted on Mar 22, 2018 0:03:39 GMT
@bergdorfblonde - my aunt keeps asking me why are they waiting lol! I said it's what they do! I had the option to stay and be admitted. But here in the winter with the winter visitors it's a NIGHTMARE! I've done that before and each time I say never again! lol but I don't have much choice sometimes. I go back to 73 I hear yar I was born with it, so I get kinda used to it so to speak. I got the Pacer at 35. I'm now 45 in Aug. We didn't expect that but ya never know with body parts. We won't talk about my stomach mess but that's getting better. But yes it gets super frustrating. You learn a lot as you go. My mom was my biggest advocate and now that she's gone I really have to step it up. Even as an adult it's difficult. When I made my appt I have to make sure they have a rep there for the Pacer since they don't even make my type anymore. Last time one never showed and I had to reschedule after sitting there for two hours. Usually my cardio works are a full day of tests. It's always been that way so I get used to that part. But now I make them check. With the recent events Ii'm hoping it will speed things along anyway - I just wanted you to know how great ful I am for this board a lot and that we can learn stuff and support. It is always nice to hear or know you're not alone in that stuff. Anyway i didn't mean to be so long winded lol! And ihope your DH is doing ok! SO many similarities--it's amazing. I should probably take this to private msg, and if you want to, that's fine... but I'll try to answer you here. You were young at 35 to get the "Pacer" (cute terminology--I could tell that you've come to terms with things early on!!). You're 45. GREAT age! My 40's were a time where I felt so confident and invincible. I'm 57 now and things do make me exhausted (but I'm not doing my best as far as my health is concerned--I could eat better & I have to begin routinely working out again)..... I understand about your mom being your advocate!! My mom was mine beginning at age 13 when I was shot. She had 5 other kids and yet she was my support team. She learned ALL about my eye situation. She found the best surgeon in the world who took on my case. I was the first one in the world to have this particular implant b/c I rejected so many others.. It's all interesting. But I had roughly 30 surgeries beginning that year and she stood behind me, reminding me of how strong I was! I never felt like I couldn't do something, and my disability never stopped me. I strove to work hard, became a Paralegal before I finished college (studied with my dad), and yet still went to college just because I wanted to......... When I got married, I took over the task of my medical issues and all of the details. She was updated on everything, but it was now mine to own. Fine..... Back in 1974, they told me to "just take an aspirin" when my head hurt. Ha! I wound up taking a lot of aspirin daily and wound up with stomach and esophagus damage. I'm on 3 Rx's now and have varices. That's when I got put on the least damaging opioids vs otc pain relievers and was now watched closely. I limited alcohol and things that hurt me. I never drank coffee or anything. Never smoked. Never did any drugs. I stopped all soda. Tried to clean up my act and lost a lot of weight (from a size 0 always, to a 20 after my kids, and then to a 2 after a year of re=learning about health/nutrition).... Long story short: The surgeon who pioneered that implant surgery on my eye socket, passed away. After 40+ years of the implant being successful, gravity hit and it began to fall to the ocular floor and to my sinus cavity. OUCHHHH! I couldn't find a surgeon skilled enough to even want to take my case. I even moderate a website for monocular people, to help them (and their families) navigate through their new life. That's where I found my angel surgeon who is my touchstone. He worked at USF and gave me a referral for a new USF surgeon who worked at the Mayo Clinic. I met her and she had a plan for the surgery! She was able to get ALL of that old icky silicone bead implant out. It took 6 hours, and it was 42 (or 43?) beads that she had to retrieve and chip away at to get. She dug into my sinus cavity and chipped away at my bone in my ocular floor. OMG, it hurt like hell when I woke up. But she told me that she got to the bb in there that I was shot with. MIRACLE MOMENT. That meant that my pain would be diminished, if not eliminated (still waiting to see!!). Anyway, that surgery was in January. I'm awaiting this surgery to build up my eyelid and then I should be done (I hope), probably by August or September. But, I'm proud that I did all of that investigating and waiting on my own. DH was positive that there was someone out there who could do this for me, and he was right!!! As for you, you have to garner the most info you have on your case and keep it in a hand written file. I don't trust it to just be on a flashdrive or on your computer alone. Get your old records from your surgeon....... Get as much as you can and keep it. You sound like you already know the ins and outs of dealing with the healthcare crap. Good for you. I know that we could sit in an office for the entire day (that's what I do when I'm getting my prosthesis made--ALL day!!!), but we do what we have to do. When we're okay, I try to live as though THAT isn't the sum of who I am. It's only a part. Ya know? I try not to make it too big, but sometimes we're reminded that we DO have special needs and it takes over our lives for a bit. Sucks, but that's what we have to deal with. I feel for you!!! You do sound like you're on the right path though! If you were long-winded, then I just wrote an entire book report! LOL. DH is doing well, thank you! We'll see what's ahead for both of us this year, but right now we are each other's cheerleaders! We're only together for 10 years, so I've done this on my own before him (exDH didn't really want to know much about it other than to drive me places)........ But, being proactive and never giving up is what makes us so strong. BIG hugs to you!!!!! |
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Post by Deleted on Mar 22, 2018 0:07:08 GMT
“The other day alone was enough for my PCP's office to assume that they were speaking to my surgeon and not little old me!!!” That’s what made me think of it. You’ll definitely have to see where that would fit in with HIPAA. If you do decide to proceed, I don’t think it will happen overnight. It’s groundbreaking. Which is both awesome and intimidating at the same time. But groundbreaking means nobody else has laid the groundwork for you. So you’re going to have to hustle. And pray. And wait. But you might very well open up a whole new avenue in patient care. Wow! How awesome would that be! jenjie : Too cool!!!!!!!! (oops: HIPAA; not HIPPA---d'oh!). I'd attribute this avenue of work to your ideas and give you the proper credit for that (we'll have to speak more about it)......... You're too cool. Thank you!!! I will check into this. My only thought is that I'd have to train others so that I could delegate sometimes when I'm not well enough to be "a tiger". But, yes, I could see this as a GREAT idea!!!!! Very awesome indeed!! |
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Post by Deleted on Mar 22, 2018 0:10:51 GMT
Donnie : That's great! 1/3 less? Cool. The pain clinic I go to seems to be INSISTANT on my getting off of the Rx's, which made NO sense when there was no end in sight for my pain level. Stupid. They didn't know how to approach my particular situation. That's 1 reason why you have to be proactive, but yet find the best doctors...... I learned to ASK them to read each script to me before I leave, so I'm sure it's the right one being sent over. Sometimes we get distracted with small talk and things get messed up! I learned to tell them that I'm in pain and tell them what I need... And, yes, putting pills aside and weaning off slowly on your own is the way to go. They don't need to know...... I'm glad that your friend looked better. Geez, I was never that badly off even when I was in the worst of pain. I never took too much of my meds and never looked ratty (at least I hope I never did!!). People know when you're doing well and you're healthier--it shows!!I think my friend's problems are more depression related--divorce, having to start over, old, pain, (he's in his 80's) He and his wife got divorced a couple of years ago--and his daughter died this past summer too--so he's not had an easy go of it. Oh my--I'm so sorry!! That's all life-changing and very upsetting, especially when you're in your 80's! Gosh!! I wish him the best. I only am familiar with depression with other people. Thank God I never stopped going full-force and had depression.. My mom often says that she thinks I was the only one out of my siblings who was able to "handle" my whole accident tragedy and still be strong. Made me tough and a little snippy, but I do appreciate life a hell of a lot! Prayers to your friend!! |
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Post by jenjie on Mar 22, 2018 0:24:59 GMT
“The other day alone was enough for my PCP's office to assume that they were speaking to my surgeon and not little old me!!!” That’s what made me think of it. You’ll definitely have to see where that would fit in with HIPAA. If you do decide to proceed, I don’t think it will happen overnight. It’s groundbreaking. Which is both awesome and intimidating at the same time. But groundbreaking means nobody else has laid the groundwork for you. So you’re going to have to hustle. And pray. And wait. But you might very well open up a whole new avenue in patient care. Wow! How awesome would that be! jenjie : Too cool!!!!!!!! (oops: HIPAA; not HIPPA---d'oh!). I'd attribute this avenue of work to your ideas and give you the proper credit for that (we'll have to speak more about it)......... You're too cool. Thank you!!! I will check into this. My only thought is that I'd have to train others so that I could delegate sometimes when I'm not well enough to be "a tiger". But, yes, I could see this as a GREAT idea!!!!! Very awesome indeed!! Me too! Don’t worry about credit. This was your idea! I just helped you process a bit. 😊 but you gave me a smile. A few online friends surprised me by coming to Fred’s funeral. Introducing them to the IL’s, mil asked how we knew each other. We looked at each other and laughed. “It’s complicated.” “You don’t know how you know each other?” “I’ll explain later...” |
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Post by Deleted on Mar 22, 2018 0:38:38 GMT
Haha! Yup--hard to explain "knowing" someone online!! I'm glad they showed up in support of you during his tragic loss. (See? THAT still hits me, hard, because I remember it so clearly!!). We still have a closeknit group here and it's wonderful. I'm glad I made you smile....... I will get back to you once I check out the particulars of this idea though. It's a great one!! Have a good night!
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azredhead
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Post by azredhead on Mar 22, 2018 0:40:20 GMT
It's totally ok! Yes since I was born with it you learn what you can anc can't do and what you get used. We often joke that I can do my own EKGS! THey often miss the stickers. I am also amazed at how much modern medicine has changed. My pacer is only 10yrs old and they make it sound ancient. My hephew (no blood relation has Hypo left heart) His is light years ahead of mine. We joke about it all the time. He's a teenager now. Even for him it's light years in procedures and what they build. They don't even do the first heart surgery anymore they can put a peice of plastic in. I can't imagine having gone what you did at that age. I hear ya they told me all the things I couldn't do but I learned to do a lot with my hands. The depression was hardest for me when I had to stop working all together and and my pacer and top dentures at 40! They had to do several adjustments on the pacer to start so I didn't feel like a 90 yr old lady lol! In face Sun that's kinda what we discussed with ER cardio guy the pacer should correct itsellf it it's too high i was 111 when I first went in..it's not a normal 'heart attack' like normal people so they just have to compare it to my records to see what's normal. I hear you on the records things. I actual got a couple of folder books esepcially when I started disability. So I would have everything. My records from the70s no longer exsist as they were in a fire in a hospital in another state back in the day. Anyway I always read the medical threads. My mom used to read medical books. She knew medications like the back of her hands. If Ihad a ?? about something they put me on I'd call her and say 'does this sound right'. She's probably up in heaven stompng her feet right now getting me to push on the drs! I hope there are people that can do a new method..especially dr to patient directly. Some hospitals have a internet/email so you can review records or send a message to the physcian. I know mayo clinic was starting a similar system. They don't take my insurance now so I'm back at the childrens hospital since I'm congential. |
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Post by scrappintoee on Mar 22, 2018 0:40:38 GMT
I'm sorry....that is SO infuriating;  especially with the timing / worries about your DH! I can't imagine the stress both of you are under because of all of this. (( hugs )) and prayers for both of you! |
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azredhead
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Post by azredhead on Mar 22, 2018 0:43:24 GMT
ohh forgot on the meds thing our local pharmacy now will run a check to get the best prices. They are good about that. However they have a 3day leaway on the heavy stuff. Every 90 Dh has to change types or dose. I think that's just since the rules changed in Jan. Some pharmacys are stickier about it. Costco is the worst. They won't go before or after the 30day mark and it has to be filled the day of the script.
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Post by Deleted on Mar 22, 2018 1:05:32 GMT
It's totally ok! Yes since I was born with it you learn what you can anc can't do and what you get used. We often joke that I can do my own EKGS! THey often miss the stickers. I am also amazed at how much modern medicine has changed. My pacer is only 10yrs old and they make it sound ancient. My hephew (no blood relation has Hypo left heart) His is light years ahead of mine. We joke about it all the time. He's a teenager now. Even for him it's light years in procedures and what they build. They don't even do the first heart surgery anymore they can put a peice of plastic in. I can't imagine having gone what you did at that age. I hear ya they told me all the things I couldn't do but I learned to do a lot with my hands. The depression was hardest for me when I had to stop working all together and and my pacer and top dentures at 40! They had to do several adjustments on the pacer to start so I didn't feel like a 90 yr old lady lol! In face Sun that's kinda what we discussed with ER cardio guy the pacer should correct itsellf it it's too high i was 111 when I first went in..it's not a normal 'heart attack' like normal people so they just have to compare it to my records to see what's normal. I hear you on the records things. I actual got a couple of folder books esepcially when I started disability. So I would have everything. My records from the70s no longer exsist as they were in a fire in a hospital in another state back in the day. Anyway I always read the medical threads. My mom used to read medical books. She knew medications like the back of her hands. If Ihad a ?? about something they put me on I'd call her and say 'does this sound right'. She's probably up in heaven stompng her feet right now getting me to push on the drs! I hope there are people that can do a new method..especially dr to patient directly. Some hospitals have a internet/email so you can review records or send a message to the physcian. I know mayo clinic was starting a similar system. They don't take my insurance now so I'm back at the childrens hospital since I'm congential. Gosh! Just taking in everything you just said........ YES, things change in the surgery/medical field constantly! Then again, I had to wait years and years to find a surgeon with great skills and ideas to even be willing to do this surgery that she did!!!!! Timing.... Glad you have files and some records. Keep them from now on! I did my own SS disability. I was in denial about my being actually disabled, but it got worse and worse and I finally had to admit that my medical condition did indeed make me disabled. I got it passed through on the first try! Keeping your charts and paperwork is a good thing! I do have doctors and my surgeon with a portal that I could check my results, etc. It's a great system, but I wouldn't rely on it solely. And I DO think that the Mayo Clinic still takes Medicare/Medicaid patients, doesn't it?? I hope that you get the best help you could find. Best of luck to you!! Stay strong! |
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Post by Deleted on Mar 22, 2018 1:08:35 GMT
ohh forgot on the meds thing our local pharmacy now will run a check to get the best prices. They are good about that. However they have a 3day leaway on the heavy stuff. Every 90 Dh has to change types or dose. I think that's just since the rules changed in Jan. Some pharmacys are stickier about it. Costco is the worst. They won't go before or after the 30day mark and it has to be filled the day of the script. DD29 went to a healthcare clinic for low income people. They found the best pharmacies for each of her Rx's. Strange that the prices vary with each pharmacy, but it's worth it for her to go to these separate pharmacies! The Rx rules definitely changed since January, but especially the opioid Rx rules have tightened up. STUPID for it to affect those of us who follow the rules and prove that we need these meds. Grrr. |
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Post by Skellinton on Mar 22, 2018 3:07:59 GMT
That just flat out sucks. I am sorry.
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Post by houston249 on Mar 22, 2018 5:16:15 GMT
Once is a mistake, I could even accept 2 times, but jeez... your situation is just plain unexceptable. I am sorry your having to deal with this.
I have fantasies for this particular kind of situation. Sending the office a bill for my time (which is just as valuable as their time) spent trying to get them to do their job. The bill would contain any and all expenses that would not have happened if they had not created the situation in the first place.
Just to be clear, my fantasies are strickly for the 9-5 office staff situations only. The medical staff's jobs are by nature, unpredictable and therefore deserve a very different set of expectations.
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Post by flanz on Mar 22, 2018 5:18:42 GMT
What a drag! So sorry!
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Post by lesserknownpea on Mar 22, 2018 8:22:10 GMT
It stinks that you were forced to reschedule. I hope DH is ok when it’s time for the surgery
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Post by Deleted on Mar 25, 2018 8:09:56 GMT
Thanks Peas! I'm FIRMLY set for 4/24. All of the appropriate auth forms with the CORRECT codes are in and it's all approved. If we get an earlier date, I'm in. Hoping DH remains in good shape until then. His 1st BCG (cancer) treatment is Monday. He goes once a month. Everything should work out okay......... I'm a bit relieved. Annoyed about wearing the patch for 1 more month, but can't complain.
Thank you for your input! I will be talking to my PCP to see where this problem arose from. I don't want it happening again.
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especially with the timing / worries about your DH! I can't imagine the stress both of you are under because of all of this. (( hugs )) and prayers for both of you! 
