STEAM ROOM FOR ANGER

My gripe today is the frustrating process I often must go through to get my prescription refilled. A nurse is in charge of overseeing “oral chemo”. They only renew it for three months at a time. I call her to say the prescription needs renewed. She must get the doctor to sign off on renewing the prescription. This takes a whole day. I call the pharmacy next day, “has it been ordered?” No. Must call the nurse again.. She “just” got the doctor’s approval. She has to now fax it to the pharm which takes awhile so later today I have to call the pharm again. They usually have to order the oral chemo pills which takes another day. If I don’t get a text telling me it’s ready tomorrow, I have to call to find out what the delay is. Last month they said it couldn’t be ordered, so I had to call the nurse, she was able to call them and it got ordered.

All of this is a whole lot of anxiety for me throughout the week. I can’t just call and refill the prescription, I have to follow up on everything multiple times to get what I need, what literally my life depends on. Everyone else in the prescription process just casually approaches this like it ain’t no big deal. Aaauuurrrgh!!!

Divine and ctm, don't we have enough on our plates without the prescription headaches? My last refill of Ibrance was delivered to CVS. Didn't get a call or text from the them, so I called them. I was told it wasn't there. I told them that I got a delivery notice from the specialty pharmacy. Oh, wait, here it is. Sorry about that. Went to pick it up. No, we don't have it. YES YOU DO!!! It was delivered on ___ and signed for by ___. Took them a while, but they found it. Sheesh! Good thing it wasn't blood pressure medication!

Divine, that is exactly what I went through last week for my Xeloda. I ended up in tears of frustration.

Starting it again this week for my Tukysa refill, earlier this time, they've got 2 weeks to get it together, will call everyday till it's done. Has to come from mail order pharmacy too.

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!

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.

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.

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

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.

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. ☹️

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!

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.

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!

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?

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.

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!