STEAM ROOM FOR ANGER
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Accredo is the worst. I’ve had this process multiple times when I was on Ibrance. I’m now on Medicare, so we will see if it’s better this time with Xeloda. What’s really stupid is my doc goes through their pharmacy, who then has to call Acreedo. Too many cooks in the kitchen. I’m sorry so many of us have to suffer through that crap just to keep on living. As you say, it’s not enough we have the disease and have to take this medicine in the first place. Sheesh
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Acreedo is the worst. I’ve had this process multiple times when I was on Ibrance. I’m now on Medicare, so we will see if it’s better this time with Xeloda. What’s really stupid is my doc goes through their pharmacy, who then has to call Acreedo. Too many cooks in the kitchen. I’m sorry so many of us have to suffer through that crap just to keep on living. As you say, it’s not enough we have the disease and have to take this medicine in the first place. Sheesh!
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KBL - that surprises me. When I was dealing with Accredo, they were the best. I thought I was going to be going through them again - and was actually trying to ‐, but my insurance provided a different (and cheaper) solution. I had a hissy fit last month when my local solution told me - when I tried to pick it up! - that it was on backorder and they didn't know when they would be able to get it. Hmmm...no one else had that problem (and they are all in the same system). I call BS.
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My grandson has to have 3 epi pens. One for home, school and after school care. DIL could only get one pediatric one as others were "back ordered". After trying different pharmacies without any luck she called the doctor. Nurse said I see here he weighs over 60lbs. That means he doesn't need a pediatric one. She ordered the adult dose (x 2) and DIL was able to get them. besides the whole frustrating process the adult dose was $ 80 less. benadryl will control his reaction to eggs ( which he will not eat and he is smart enough to ask if something has eggs in it) but both the Dr. and school are covering their asses by ordering epi. Which he has never needed in 8 years. My DIL gets very frustrated and is out of quite a bit of money every year when she has to buy new ones. Not my bitch but I do feel for her. Letrozole is "special order" at my pharmacy and I have to call several days before getting it filled. I do get a 90 day supply.
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SeeQ, I think it’s because there was a middleman involved. I would check on Acreedo’s site to see where in the process it was, and it would sit in “processing” for a week. I’d finally call, and they’d say we’re waiting for your doctor to authorize. Well, then call the damn doctor again. They wouldn’t let me know what was happening at all no phone call, no email, nothing. I’m glad your experience has been better.
KIDI1919, that sounds rough. I’m glad your grandson hasn’t had to use them, but, jeez, they charge more for the pediatric version? Ridiculous.
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Divine, I can relate, going through the whole process every month is frustrating, and we should follow up on them or correct them several times. I use that one week break in September cycle (due to taking antibiotics) as a safe side, I didn’t let the pharmacy know about that- a week break- so I have less anxiety until I have my medications, or a one or two days delay won’t affect. I hate to not be honest when the pharmacist asked me if I missed any dose and I replied no, but I think annoying system needs to hear lie than honesty. I thought this strategy might be helpful...
many good discussions over early diagnosis, and reactions from people around us. For a good while I felt guilty why I didn’t check earlier until I gave up on that thought. close friends, even my physical therapist pointed at me ‘why you didn’t see a doctor earlier’... it is an old wound better I don’t open it up now.0 -
Leaning towards skipping exercise class again this week. I've had zero breast pain these last few weeks, so I have summarized that these work outs (circuit training class) is the cause of the pulling and gnawing tweaks of pain I get in my scar site. What do you think? I'm not happy about this, but do I want pain for days after a work out, or not? Do I just not do exercises like push ups, trx stuff, and lift weights on the left side. What's the point if the trainer has to modify even further for me than the rest of the class? It's a free class by the way. I guess if I really miss exercising (more than my daily walking), I would have to pay someone. Plus, I am 60 now! Don't I get a a get of exercise class card now? Wrestling pros and cons. I am not very good at it.
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ctmb, it sounds like you should rethink your exercise routine. It may be disappointing to stop your current class, but you need to listen to what your body is telling you. You have a few options. One, you could speak with the trainer/instructor privately, tell them you think the exercises are causing pain in your scar site and ask if he/she thinks there is a way for you to modify the exercises to address that issue and still get an effective work-out. It could be as simple as that. Or does the trainer think there's a better choice of a different class for you?
Since there are a variety of exercise classes, you can sort of “shop around" to find a better fit if necessary. I've always been a walker, but I could never do anything like zumba, yoga or spinning. This summer I started line dancing classes which I completely love. And last month I started water aerobics which I equally love.
Btw, I'm of similar age as you, so I think a get out of exercise card isn't asking too much! Lol
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ctmbiska I decided easier to do stuff at home anyway. There are free videos on AARP for stuff with the guy who trained RBG and are re geared to people of all all abilities and some you can do strength training at home with items in your home like water bottles and stuff like that. I think they are great and very helpful. You can pause if you need to you take a break and rest too or repeat whenever you want and do them as many times you want as well in a week and no charge
Of course walking is good anyway for most people if they can do that and weather is cooperative.
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KID1919: One theory being posited it that kids are not introduced to foods early enough. Everyone is so terrified of peanut allergies that peanuts get introduced much later in babyhood. The thought now is give your infant a little bit of peanut butter on the end of your finger and keep introducing a bit more at a time. I wonder how common peanut allergies are in countries that use a lot of peanuts - like Asia with peanut oil, peanuts in dishes etc. Seems we all lived on peanut butter and jelly sandwiches for lunch when I was in elementary school. Someone wrote she was allergic to mayonnaise. I wonder......what part? The eggs? The oil? The acid (vinegar or lemon) ? I may be wrong but why didn't she just say she doesn't like mayo? Okay -- I'm being all judgmental. Sorry.
Some folks say they have an allergy when it is really a food sensitivity. Maybe the milk allergy is just the lactose and not dairy itself. I would hate that. I Iive on cheese and yogurt. But
I love coffee and I hate awful coffee that is too thin. over roasted like Starbucks or made with instant powder. I buy beans that are roasted locally, and grind them fresh for each pot. Black. I discovered early on that what I hated about coffee was the milk and sugar. I like tea but seldom drink it. No caffeinated drinks after noon for me. A hot shower and coffee in the morning is an absolute must.
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Agree on the allergy stuff. Really? When I was a kid I knew no one with any serious allergies to food. Now all of sudden people are afraid of peanut butter. I think some people think when kid spits up it is an allergy and not that that were a pig and ate too much when they were babies if you ask me. When my son was small he would eat so much at one time and his tummy could not handle it and then he would get sick over it and it was not an allergy. He is allergic to nothing and is almost 40 now.
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I think I have a mild lactose intolerance. Enough that I can't drink a glass of milk, but not so much that I can't have cheese or ice cream.
About 30 years ago I had a coworker with a severe allergy to walnuts. He told me he unknowingly ingested some and almost suffocated from his airway swelling so much. EpiPen saved his life.
About 20 years ago, I would have a friend's son over who had a severe peanut allergy. They had to avoid places with the bowls of peanuts as snacks because he would get hives just sitting near the shells on the ground. When I knew he was coming over I scrubbed my kitchen clean and wouldn't open the peanut butter jar just in case. He didn't react to peanut oil.
Another friend had a daughter with multiple allergies including soy. For my daughter's birthday party I made a cake from scratch so she could have some. Had to make it twice because my dog at the time ate a third of the first cake as it cooled. 😖
Wheat: no allergy - I just break out in fat. ☹️
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SerenitySTAT, that last little bit made burst out in laughter! I’m with you on that one 😂
I think I have a lactose sensitivity. Milk and cheese can make me really gassy. But I just live with it because cheese!!!
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I agree that there does seem to be a lot more allergies in kids. He broke out in hives when ingesting eggs (this was before we knew he was allergic). It was me that gave him a bit of egg when he 1 st started eating food. Hives were the result and he still gets a reaction when he goes to allergist once a year. He is suppose to be eating cooked egg now (like in cake or whatever) but his parents are so stupid about his food, it makes me crazy!! Who cooks 2 different meals or sometimes 3 to cater to a 7 year old? UGH! And we sure did grow up on PB&J!
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I think children died from allergic reactions in the past, it is just that no one had a clue as to what had happened.
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Katyblu - Can't live without cheese!
KIDI 919 - I don't get making so many different meals, and I'm not the cook! I love eggs and would cry if I became allergic.
Jelson - I think we've forgotten about children dying young now that we have vaccines, prenatal care, and other modern treatments.
For those who love cheese and coffee, please try espresso cheese. It's delicious.
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Please don't dismiss food allergies as real.
My son, now 35, had a severe reaction the first time he tasted peanut butter as a toddler. this was before peanut allergies became widely known, and it was impossible for us to have others take it seriously. with one taste, his face swelled up, his eyes were swollen closed, and he had trouble breathing. luckily we had benadryl capsules in the house, so after a call to my doctor, I administered benadryl and got him to the ER.
What we went through after the diagnosis was beyond belief. Schools would not make any accommodations at that time, not even to ask that snacks brought it for birthdays or holiday parties be free of peanuts just for his class. Any time there was a holiday event with snacks at school, I had to volunteer to attend so he could be safe. Birthday parties, family parties, all involved me making sure anything he ate was safe. his grandmother kept trying to get him to try cookies or candy with peanuts, to see if he was "really allergic", because she thought I was over-reacting. Imagine having to tell a child not to eat anything grandma gives them without checking with mom first! we couldn't take an airplane on vacation because there was no such thing as a peanut-free flight - bags of peanuts were given on flights all the time. As he got older, he learned to read labels before he ate anything outside of home.
Early on, we took him to Children's Hospital in Chicago, and saw the head of allergy/immunology there. She said that yes, allergies have always been around, and have caused deaths, but also, that allergies are increasing. She knew that some doctors were recommending kids be given tiny doses of an allergen, increasing over time, but she said that was dangerous for severe allergies. her recommendation was that we protect him from any exposure to peanuts for 8 - 10 years. at that time, we could re-introduce a small amount, and if he didn't react, try again in two weeks. if there was no reaction, we could then consider the allergy to be outgrown. we followed that, and it worked. my son is on his own now, and has no food allergies. He eats peanut butter regularly.
Sorry for the long post, but this is the steam room, right? when anyone says that allergies might not be real, or that parents over-react to small food sensitivities, I always speak up. if you've never seen a kid struggle to breathe, or unable to open his eyes, because of an allergy, you can't know what it's like. children die of allergies. the biggest culprits are peanuts, bee stings, and shellfish.
I grew up eating PB&J all the time. That doesn't mean that someone else's allergy isn't real. I wasn't terrified of giving my son peanut butter - until I did. I I hadn't had benadryl in the house, he could have died.
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tinkerbell
I'm so glad to read your post. Too many of my contemporaries, I'm 65, question food allergies because we weren't aware of them in our youth. I am not an allergist so I can't give a good explanation as to why we see more food allergies these days, besides heightened awareness of them.
As a recently retired teacher, my school district was very conscious of food allergies. We usually had a class in each grade that was a nut free room, we had a separate table at lunchtime for students with food allergies as well. I also had to deal with a kindergartner who I knew had peanut allergies but we did not know she also had tree nut allergies. We were studying plants and seeds and she handledan almond that was still in its shell. Within minutes her eyes were red rimmed and started to swell. We called 911 and our health aide rushed down with her Epi-pen. Thankfully she was treated and released.
Please take all food allergies and the need to have Epi-pens handy very seriously!
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The nut allergy is quite worrisome. Thanks for sharing your stories.
My daughter is a teacher and made aware of any children with food allergies. She is a reading specialist and mostly though she is trying her best to teach them to read. When both my children were young, they didn't have food allergies but what I think was environmental issues? Daughter has very angry sinuses. That's how the specialist described them to us when she had to have surgery in high school. She's 35 now, you wouldn't believe the crap that still comes out of her nose. My son had asthma at a young age. Nebulizer used plenty. Nose always runny. He always threw up in the car seat. Now he drives huge trucks, tractors, works in fields, and always stinks of diesel fuel! He still gets poison ivy, but not as severe now. No steroids needed. Amazing how child to adult bodies adjust although they say an allergy can turn up at any time. It's scary. My mother was intubated twice from allergic reactions.
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I've had respiratory allergies since I was a teenager but my mother did not develop allergies until she was in her 70s. How is one to know whether they will stay allergy free or not?
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My kids are in their 20s now. Their elementary school had a no-nuts policy. We went through lots of string cheese. I didn't grow up on PB&J, but I love a good satay sauce.
I've read of a few members here reporting food sensitivities after chemo. Can't remember specifics. One reason I fast is for better gut health.
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I know someone who had issues with her kids and the dyes in foods. They basically eat fresh fruit and veggies a lot and whole wheat pasta.
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SerenityStat, as far as I know, I didn't have food sensitivities until after chemo. Mine seemed to appear 2 years later. Connected or not? I have no way to know. But we do know that adriamycin is technically an antibiotic (as are some other chemos), and we do know that using antibiotics will necessarily mess with your gut flora. So I don't rule it out.
Speaking of food issues, today I made gluten-free chocolate chip cookes using Bob's Red Mill 1 for 1 flour and the recipe on the back of the bag. Also used the flour to make pizza crust this week. I'm not disappointed so far! If I can't eat wheat (and I don't know that yet), I can substitute okay.
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OK, here goes my Rant. Pay attention, my Fellow Companions on this Journey.
As of April 2021, healthcare providers have to provide free access to our Patient Notes/Progress Notes -- or whatever they are called in your health plan. Prior to now, we patients never knew what the hell they wrote about our appointments unless we submitted some type of request for information and you better know what you want. In the past, requesting records could cost a fee and the wait time was sometimes weeks. Oh, but not now!
Back in 2014, my lymphedema (LE) worsened so I sought treatment from my Kaiser plan. I was assigned a LE-certified PT for MLD. A few months later in early 2015, the PT decided to start 4 weeks of CDT bandaging despite the fact that I had a skin rash on my LE arm from a new compression sleeve (contact dermatitis) she had previously ordered for me. It was a BAD rash and I ended up in ER because of it. The PT went ahead with the CDT despite the fact that the bandaging also aggravated my rash. Then, in the second week, she begin using hard, forceful strokes up my arm which hurt. We both watched the fluid move up my arm to my shoulder. Where. It. Stayed. I didn't know it then, but hard forceful strokes on the arm are a big No-No. It can damage the vessels. At the end of that second week of CDT, my upper arm was now bigger. Gee, I wonder why. After 4+ weeks of this miserable bandaging, I had no improvement in my LE. Oh, no, it was worse now. The PT just cut me loose at the end of treatment. I had no clue what I was supposed to do. Thus began a 6-year journey with Kaiser to receive the treatment I needed. They could not deliver it.
2016: Anyway, I ended up seeing a private practice PT that actually knew how to treat MY type of LE. I asked Kaiser how I could request out of network therapy because their PTs just couldn't get it right. They denied my request stating that their PTs had the expertise necessary to treat me. I could not figure out how they came up with this conclusion given my horrible experience with that one PT. Little did I know...
2021: When I learned that I could now look at the Progress Notes from this PT, I began reading them. Oh Boy! That PT did NOT tell the truth about what occurred at the 6 MLD and 14 CDT appointments back in 2014-2015. I was shocked and very upset. I then knew why my request was denied. It is AMAZING what they write in these Notes. I have just completed a Rebuttal letter to Kaiser to be placed in my patient file because that {replace5}amp;*)+@#! PT made it sound like I was fine at the end of treatment when my arm was now bigger and my life as I knew it was never the same. No wonder other PTs and my doctors couldn't understand my issues.
I now make it a priority to review Progress Notes after every Kaiser encounter. OF ANY SORT. Even this past week I found three glaring errors in yet another Kaiser PT's Progress Notes. See, they include "Subjective" comments in their documentation which refers to comments they claim the patient -- YOU -- said. Uh, no. They get it wrong and THIS means when the next provider reads those Notes, they think they are reading reality and truth, and then base their treatment and decisions partly on what the other providers write about you (or what they left out). Sometimes what they write is petty, snarky, totally false, misleading, etc. I refuse to tolerate such S++T because it led to 6 years of unnecessary suffering for me.
I implore all of you to check out your patient file after appointments. I have even had Health Conditions and other pertinent information in my Progress Notes that my providers NEVER TOLD ME ABOUT. WTH!
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Wow that is awful!!! You should be told all information and would think it is your right to know.
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Coincidental timing. I was pondering this issue last night. My CT scan showed up in my portal before my appt (next week) to discuss. This cancer center posts a disclaimer that you can look, but you might be reading info before the Dr and that you might find disturbing info. I want to know the big pic so I'm prepared when I see the Dr. I also read over my bloodwork to see what was too high/low. Until recently all this was hidden from the patient. My PCP sends me to lab a week before my appt so we can discuss what might be an issue (thyroid, cholesterol, etc) and what drugs might need adjustment. In the past I recall going to Dr for 4pm appt, being asked if I was fasting (no! why? no one mentioned that!) and they said "well we'll do blood work anyway". Never heard a word about it. When I switched Dr and she had me do fasting bloodwork so we could go over it, the 1st thing that came up was that I needed thyroid meds. SO..that's why I had no energy! But unless the test is done fasting, the info is inconclusive. Additional transparency over the last few years has benefited the patient. No longer can the Dr play God and keep us in the dark.
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nopink2019:
I've never had to be fasting for a thyroid panel. They just want me fasting for cholesterol and metabolic panels.
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I've never been told to fast for any blood work, just some scans.
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Someone told me I needed to fast for an a1c I laughed in her face and said no I didn’t
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This is what I found easily on fasting for basic blood tests:
Not all blood tests will require you to fast beforehand. Blood tests that you will likely need to fast for include:
- blood glucose test
- liver function test
- cholesterol test
- triglyceride level test
- high-density lipoprotein (HDL) level test
- low-density lipoprotein (LDL) level test
- basic metabolic panel
- renal function panel
- lipoprotein panel
My PCP doc usually has me come in the day before for my blood draw so we have info during the appt.0
